Comments On Article: The Many Years To Making Our Home Practical

If you would like to share your comments for article The Many Years to making our home practical, this is where to do it! 

Click the Reply To This Topic button below to post yours.

We have chairs and a loveseat in the living room, and a beanbag chair behind the loveseat that we bring out for extra seating that people fight over because it's so comfortable.  One time some relatives came to visit, and were confused because we didn't have a couch. It was as if they didn't know how to sit down without a couch! :) :) We assured them that chairs worked just fine for sitting in. :) We sometimes move things around in our living room. This spring I am going to put a ping pong table on one side of the living room.  :) If it hadn't been for the Grandma Donna example all of these years, I probably wouldn't do that, but its fun to have a ping pong table up for awhile. :)

What really spoke to me in your post was putting things you're working on in a bowl or basket to move around with you. It's one of those things that just sounds right. I have a lot of mending all of a sudden because some of my linen things have sprung leaks and I need to figure out how to mend them. My duvet has a worn spot that I can reinforce from the back, and a pink linen nightgown that got worn I've been thinking could be used to make a flower patch over the worn spot on the front. That way it looks pretty, not just patched. I'll have to make a flower pattern first. 

I love that you repaired your vacuum. We need to check and clean ours. 

I like the idea of putting furniture where you need it and not necessarily where it's supposed to go. That's not an easy concept for everyone. 

Our home is not laid out so we could live in one room but it would work well for us right now.  It is a wonderful idea 

I'm probably the opposite to this - we have a three bedroom house, almost sixty years old so an 'old girl' in modern terms - tiny gallery kitchen, and small open plan living room - apart from that, one bathroom and separate toilet and that's that.  We were lucky enough to buy this as a run-down place and as it's highset, we enclosed the downstairs area which is where we spent most of our time.  This houses the two computer desks (yes, we have one each) and a small kitchenette using the old cupboards from when we remodelled the upstairs kitchen, a 1930's kitchen dresser, and various storage boxes that my husband has made himself.  However, my two "spare rooms" which were guest rooms once our girls grew up and their children grew up, were not used to any advantage - so one we turned into a utility room which houses the bookcase (vastly pared down these days and also houses some dvd's), and drawers housing our excess clothing.  The second 'spare' bedroom we have just in the last few months turned into what the British call a 'snug' - a lovely little room that is for us only.  I make no apologies for 'closing the motel doors' as we've been used constantly for the last fifty years since we moved down here as a stopover for anyone travelling through.  We're finding it's too much for us these days so that motel has closed down.

My only suggestion is to make or purchase a smaller home as one ages that is very easy to clean and has areas for exactly what you love to do. Having a large home, on two levels, that has high upkeep and maintenance makes the late senior years stressful. My husband loves larger homes and, yes, they do have some benefits, but for the elderly they have many more negatives. The older one gets, a desire to just enjoy the short time left is stronger than any desire to clean or fuss.

I love the idea of putting furniture where it works best for you. Thinking out of the box is something that I greatly admire. Your home works for you and that is what is truly important.

gDonna, your home is lovely and peaceful. I enjoy all of the pictures that you post. Thank you.

My husband and I have been there for my father in-laws Alzheimer’s diagnosis and seven years of increasing care and needs until he passed. We were also the ones that helped my mother in- law sell her large home and car and move to an assisted living facility. We learned about this process earlier than most couples because we are the youngest children in our families and our parents happen to be older.  It has been eye opening and many folks, esp in their middle age, seem unaware of the cost and heartache that might be ahead. We learned how important it is to have an up-to- date will, trust, and financial documents that are in order. We buckled down and arranged that right away for ourselves after dealing with some confusing messy times caring for parents. To me, it is the greatest gift my parents could give me and that I can give my own child to have that “financial/legal house” in order so they understand our medical and burial wishes before it turns into a crisis.

We also made the unusual decision to downsize from a large older house with a huge yard that required extensive upkeep to an accessible secure and easy to navigate condo (with a balcony so I do have a few vegetables and flowers) near the heart of town (close to the public library, town hall, park, town senior center, post office, and a couple little cafes) in our early 40s so that we can eventually age in place for as long as possible. When we made the move to a smaller place in town, many people thought we were “going backwards” in life and giving up the American dream. But to us it feels like we live our dream of having a safe and secure future living close to a community. We don’t know when or how we are going to go but whoever dies first will have an easier time than if we hadn’t pared down and prepared. Our room and kitchen are all on one floor with few rugs (easier for mobility and minimizes trip hazards) and our bathroom is very small but has a walk-in shower with grab bars (also one next to the toilet). We also chose a home where we can continue to get out into the community without a car. I noticed many older folks feel isolated or trapped in big homes once they stop driving. We keep one car now but if we lose that ability to drive then we can walk (with a walker!) or even roll with a wheelchair on well-kept sidewalks to local shops and community places. It has brought us so much joy and ease to live life in this simpler way, though like everyone, we do not know what the future will bring.

This is wonderful information.  It is so engrained in our minds “how we are supposed to live,” it’s difficult to think outside the box. I once encountered a gal with 4 children who was trying to determine which two to pair together in their 3 bedroom house. I suggested making one a sleeping or quiet room for all 4 and the other an activity or play room.  She had not thought of that and I think it’s what she ended up doing.  
We don’t yet need grab bars and the like but are thinking in that direction.  When we were looking at houses, we wanted single level with no or very few steps and wide doorways.  (Things like that). 
I loooove your frog pin cushion

I had no experience with hospice at all when we brought my mom home.  As is often the case, our nurse was amazing.  I felt like a dolt when she first arrived, but she just made herself at home and told me to sit and take a rest whenever she came.  She would ask me for anything she needed to know.  It was a huge relief.   What Donna said is absolutely correct.  My mom was in the living room and I slept on the sofa at night.  The nurse would come in, put her lunch in the fridge and sit at the table and make notes, calls, deal with meds etc.  She thanked me for keeping it clear and available.  She did request a little more room on either side of my mom's bed so that was an easy fix.  But we moved a chair into the dining room (it's roomy as it's a 'great room ' situation with no walls).  We also moved the tv upstairs and tuned in to my mom's regular shows in hopes that it would be comforting to her.  I don't watch regular TV at all so it was annoying lol.  

I never saw any of that coming so it was a jolt, for sure.  I'm glad I was organized and tidy because that certainly made it much easier.  

We built our first real home in our early 40’s and did some things right, some wrong but it still works. We built our bedroom upstairs but there are two bedrooms and a bathroom between them downstairs to move to if needed.

My husband became disabled and moved downstairs before he passed away. A ramp outside was installed for him and I left it in place. Our house is elevated five feet due to flood zoning, which it never has flooded here in over 100 years but one can’t easily argue with the government about that. The ramp is very helpful to me. I got a rolling foldable cart and roll groceries and such up the ramp with it. 

We also have a step in shower in the downstairs bathroom with grab bars, and a bar by the toilet, all of which I left in place. 

I heartily endorse the idea of getting legal documents in place well ahead of time. Dementia can make a person legally unable to sign and that requires a lot more legal work and expense to get the paperwork done then. Also look at a Guardian at Need document, so no stranger can come in and take over as guardian by using a co-conspirator judge. You will already have one named. 

I don’t follow the decorating rules either at this point in life. I have what I like and what works. I have a very small kitchen table so I use a big folding table from the shed when family all eats here. I have a couple of long cloths and a table pad to make it nicer and we use padded folding chairs that are stored in a closet for extra seating. I’m in Florida so we often put the folding table on the porch when we have a crowd. 

Oh, I forgot. Our bathroom door was a hair too small to get a regular wheelchair through. A light rolling chair called a transport chair fit but we opted to take off the door and install a sliding “barn door” instead. A wheelchair will get through now. A hook and eye latch is used to latch it shut. 

Gdonna I love the story of the note on the typewriter. So sweet!  I would cherish that forever!

I love this post, because I love seeing your home, Gr Donna!  It's just so homey and cozy. I would agree w/the little type-written note. I think it's different in such an amazing way. Love abounds there, especially as one who is a trend-despiser. LOL.  The kitchen... so darling. Your paneling in there, reminds me of my Gr-parents house. They had that! I just love it & love how you make it all work together & Charles is even on-board :). Of course there you have "my" precious rocker. Love it!  Thanks for the vac cleaning reminder (groan). I like the ones I didn't have to clean. We have 2400 sq feet 1200 too much. All relatively odd space. We've got a separate family/living room split by the front door. Hate it. One side houses the MBedroom (& door right there center, yuck), so we moved the tv out of that living area & put it on the other side. If we have company, we dislike the tv & company right there at our door. It houses a big table for puzzling that we do daily & wall of books, a little desk area for whatever. Stephanie G - the ping pong table will be great!  The other side is the tv (could do without) which is adjacent to kitchen prep space.  I don't know where I'm putting my rocker (lol), but it's going there close by. We have a huge problem with people gathering in the kitchen without a comfy place to sit. 

We could potentially divide the house in half, with 3 bedrooms & family rm on one side and master and living room on the other.  If something happened to my hubby, I'd probably close off the master area and use it for storage, LOL or use the Master side and have my dd and husband live in the other!  One thing I did do was I removed all things I use from lower cabinets to higher ones. I have a horrible back & I reach better than bend.   We also just had a shower installed & tub removed in our MBath complete with grab bars.  And last year we got new flooring (no carpet which I miss dearly), so hard floors and no throw rugs (rather cold and hard) other than at the outside door & at the kitchen sink in case we drop a sharp items (we trip over it constantly).  Also, in cleaning out spare closets, we house the Christmas tree and extras in the spare room closet so I don't have to schlep to the shed where stuff dry rots.  Easy to grab & put away.  We do have a pond which I wish my hubby would dispose of. It's difficult to take care of which he doesn't really, so it's an eye sore. My hubby laughs that we finally have a lot of property he wanted, yet now we're too physically unable to take care of it. It really does us in. I'd rather live than take care of a bunch of stuff at this point.

We may have our niece stay with us for a month or so as she's retiring from the navy, coming back from Bahrain. The house is at least set for that. Other than my daughter and her husband who are 25 yrs old, we have no family to speak of. My guess is we will be the ones who need the help. LOL

I have moved things around to suit me. But I have always done this as I do not follow trends at all!

I have 3 bedrooms, one is up with a loft area, 2 down with only 1 bathroom.  I loved having my bedroom upstairs but when my old dog could no longer go up and down the steps I moved "us" downstairs to one of the guestrooms. It worked out fine, smaller room but I don't care. It serves its purpose and I have a nice window to look out of if I want my coffee in bed.  I still have a guestroom downstairs and I not only use it for a guestroom but I also have a rack with home canned goods stored and I set my drying racks up in there. The door stays closed so no heat goes in or very little because I have the furnace outlet closed and use mainly my wood stove.

I have a great room which is supposed to serve as a dining room at one side, I removed the extendable table (seats 12) and shrunk it to seat 4 put it in the kitchen and moved a table to that area with 2 library chairs, I have an oil lamp on it and a regular lamp on the counter in back of it. It serves as a place to mend, read, rest of doze.  If I need the table extended it is simple to just extend it into the dining area. 

I have loveseats and chairs in the living room part of the great room. I have a regular size sofa and chairs in the sunroom with the TV. It is not set up for others taste but it works for me. I have always been seen as "different" so nothing new there LOL

My kitchen is small, but it suits me. I am short and it is hard for me to reach some things but keep a step stool if needed. 

I have hardwood floors everywhere except the stairs, easy to clean and vacuum. I used to have carpet everywhere but since having it removed and installing hardwood my allergies are so much better.

Although we have two levels in this house, it's not a big house - downstairs also houses the single car garage and both my kitchen and my living room are small due to the internal stairs - bedrooms are not big either, which is why we just kept ours and turned the other two into more useful areas.  Our 'office' area down here is really just one big open space, so desks/computers in one part, a comfy lounge suite where we usually have visitors sit, my big upright freezer, the drinks fridge, various cupboards and a kitchen sink and cupboards rescued from the upstairs make-over.  If necessary we could live down here quite easily, there is already a toilet and the corner could be made into a shower room.  We reversed the toilet doors so they open out instead of in for safety sake, and have grab rails in place should we ever need them - we have age proofed our home as best we can.  

As for moving, to downsize we'd not find anything smaller than this, and to move wouldn't be to our advantage as where we live is close to everything and we wouldn't need a car, we could walk.

Our home has been arranged so many ways over the years, to fit the needs of our family!  Even now our setup is somewhat unconventional.  I agree it makes sense to use homes the way we need to, not according to any cultural standards or social media ideals.

My house is 100 years old and is on a raised foundation.  Eventually we will add handrails to the front steps, plus handrails on the side steps and a ramp there if/when it is needed.  If we ever remodel the primary bathroom we want to have a roll in shower, as right now it is step in.  The house is single story, which was important to me when we were looking at houses, along with not having a pool.  We’ve also live close to our downtown.  I know some people like to retire in more rural areas or farther out in the suburbs with big lots, but we have always lived as a car-light family and chose a house less than a mile from my husband’s workplace so he wouldn’t lose family time to a commute (which also saved huge amounts of money over 3+ decades).  We are within half a mile of the library, a park, the senior center, and the post office, as well as shops, restaurants, and cafes, although we don’t really patronize those.  Within a mile we have our church, the doctor and dentist, and all sorts of businesses.  From where I sit in my house looking out a picture window at a lovely old neighborhood with established trees, you would never really know we are so close to all of that!  Not only will we have options to get places if we become unable to drive, we also remain in community and avoid becoming stranded or feeling left out and alone.

I am back into a decluttering and organizing mood but I am stumped on what to keep and what to release.  In the past I have gotten rid of things and wished I hadn’t, but at the same time I need more space for the items we actually do use.  I can always tell when I need to do a clean sweep because things stop getting put away neatly.

This ties into our retirement, because I feel like we are spending more time cleaning and organizing than we did before.  But then I remembered that my husband brought a lot of things home from his office and they don’t have places yet.  Also, I started saying yes to more Buy Nothing items, and now I see that was out of fear, which I know is a bad place to base decisions from.  Having too much stuff now to save money in the future probably isn’t the best plan.

I have been at the home hospice bedside of four loved ones, but had never really thought about where we might set up hospice here at home, so I appreciate your post, Grandma Donna.  One thing I noticed is that when the hospital bed is in the living area, there was more visiting at the patient’s bedside in the final days and hours, whereas when the patient was in a bedroom guests tended to congregate in the living areas and only pop in occasionally to sit with the hospice patient.  With my father-in-law, he was in the family room and not only did so many people come to say goodbye in the last days (he was no longer conscious), but there was room for a large group of us (15+ people) to be together and with him at the very end.  He slipped away as we all sat around him telling stories of our time with him — it was precious and heart breaking at the same time.  But I can see with a person who is on hospice for an extended period of time that a bedroom might be better suited to give the patient privacy and rest.  My stepmother was on hospice for 6+ months, so being set up in a bedroom was better for her.

Thank you for posting this thoughtful post. I had not thought about getting a small fridge for Jacob and my room. Our room is downstairs and off of the main room of the house. It's to the right of the front door. I also hadn't thought of the therapists using our bathroom! It's upstairs. I might see about getting a small fridge and a small french press and an electric water boiler so that we can have a coffee and tea station in the room. I am already arranging to have a coffee table removed from the room so the center of the floor is open for physical, occupational and speech therapies. 

I might need to consider getting rid of a nice couch we have and replacing it with two chairs and a small center table (or maybe the small fridge can be the center table...). There are so many adjustments we still need to make in our room before Jacob comes home. In the back of the room is a wooden, twin sized bed with drawers under it. I might have a curtain partition put up around it so that I have a little privacy if we find a way to get a home nurse in our rural area. 

My husband and I will have two separate rooms for the foreseeable future. All Jacobs medical equipment will not fit in our room and I have to sleep close to him. My husband needs rest for work so this is the best solution for the time being. Thanks again for helping me plan even more. 

Grandma Donna Wrote,

Kieva A, the nurses are very good at adapting to the homes in which they come to.  They normally bring their own drinks and food if at all.  The couch may work just as well, since you like your couch and may come in handy with some exercises with Jacob.  Maybe give it some time as you see the needs of the required space that you will need, but mostly make it comfortable for your needs in caring for Jacob. They also may their own suggestions.  I am happy that you are at this point of needing to consider these things, meaning getting closer to that day Jacob comes home.  

Much Love, Grandma Donna

Often a hospital bed cannot fit down a hall and make a turn into a bedroom hence they end up in the living room.  

If you are considering downsizing, make sure it's big enough to move around with a wheelchair or even a walker.  I fought my mom for years about making her house accessible for a walker as she needed one, but no she furniture/wall walked through an over furnished house.  A broken arm ended her sojourn, and she had to move to assisted living.  My late dh could no longer visit when he became walker dependent.  

It's been years since I "decorated" my home.  My goal is utility and comfort.  It's far from perfect but basically both comfortable, easy to navigate and easy to keep clean.  I was encouraged to get rid of numerous kitchen tools that I seldom use.  I said no because I have room, they are paid for and even though they maybe only get used once a year or even two years, I'm keeping them.  I did remove them from the kitchen and have them stored in a tote in the laundry room.  Getting them out of the kitchen drawers was a welcome change for my daily life and still having them available for their unique uses is comforting.

I took two large boxes of donations to a thrift shop today.  Each time I do that it feels like another brick has lifted from my load.

Grandma Donna wrote,

Ann W, when we shift furniture in our house we pull out the walker and use it for our measurement guide  to make sure it will pass through.  Thankfully right now we can put it back behind the bedroom door where it lives. We also have a small transport chair that does well in our home as we have had many reasons to learn the tricks to the trade so to speak. 

We keep the regular size wheelchair in our old laundry room along with a bedside commode and other medical items such as "Wheelamina".  

Wheelamina is a wheelchair/walker that we purchased a few  years ago when I had some medical issues.  I gave that name to the conversion chair/walker that folds and will fit in the back of the car.  :)

Ann W, that is a good point about hospital beds and hallways — it made me realize if we have to have a hospital bed in the house it will have to be in the living room or dining room, or in the big bedroom that is currently serving several purposes, since there is a set of French doors into that room.

When my grandmother stayed with us her walker could make it through our doorways.  She would have preferred to use the furniture and walls over the walker, but I insisted because of our dog.  Animals do create fall hazards in the home.

Yesterday I decluttered several easier areas in preparation for tackling the kitchen today.  The living room, dining room, and breakfast nook are all clean and tidy again, with everything having a place.  I also did my nightstand.  I would like to have space to store the less often used kitchen items that I would rather not part with but also not encounter daily, but that isn’t happening today.

Topics like this always remind me of why I hate the "great room" so much.  I have one.  I've determined that this was a sneaky way for builders to save money.  Less walls, high ceilings = less work.   I did not want one, but we had a very limited choice in our town.  Either century homes or these.  I still haven't ruled out putting a wall in to separate the dining and living rooms.

I know so many people that turned their separate dining rooms into something else.  And then put the dining set into the den.  Those dining rooms made great reading nooks, offices, craft rooms, and one even became a guest room.  A couple of doors and they were transformed.  Slight modifications like that and moving furniture are the easiest ways to make a house work for you.... unless it's stupidly done like ours lol!!

I have a question about needing to put the hospital bed in the living room, we have had 2 hospital beds and they each were in one of the bedrooms which had a normal door.  One we bought 2nd hand and it came apart and that was put together in a bedroom.  The second was brought in by Hospice and it was in pieces and put together in the bedroom.  These bedrooms were on the first floor so didn't need to carry heavy pieces up the steps. Why do you need a big door to get the bed in?  

Grandma Donna wrote,

CindyD W, in our experiences with the hospital beds, they all have gone through our regular front door.  They come in the house broken down and then put together in the room that you want the bed put in. I am not familiar with any other type of hospital bed.  The last two times with hospice here we used the living room to have them closer to the kitchen and dining area for easier care and to able to hear them and check on them easier. 

Grandma Donna, Thank you for your reply.   We just thought the bedroom was a better answer.  It just depends on what fits your situation the best.  

I also found this short on YouTube that had some hints of some things that might be helpful for people who need a little assistance.  https://www.youtube.com/shorts/hcPAK3PcWe0

I’ve spent the afternoon thinking about this, and I am glad to read that the hospital beds can be broken down and put in other rooms.  That makes sense, now that I think about it my grandmother was in a hospital bed in a family guest room and it wouldn’t have been able to have been put in there if it didn’t break down into pieces.  I’ve decided I would rather have a hospital bed in the large back bedroom rather than the living room.  My house isn’t open concept at 100 years old, but bungalows do have a flow to the rooms and the entry door comes directly into the living room without a foyer or entryway.  If it were a long hospice, the big bedroom could be set up as a studio.  It’s so hard to know, my stepmother spent more than 6 months on hospice, although I don’t recall if she had the hospital bed the entire time.  My father in law was just a couple of weeks.  My mom was under 48 hours and it was insisted that she would be put in her own bed, which was fine with them because they didn’t even know if she would make it through the night.

Other family members have had hospital hospice, in the hospice wings.  I do wish we had done that for my grandmother and my father-in-law.  It is harder in terms of being there all the time, but easier on the caregivers, I think.

All of this makes me think about my own health and what I need to take care of it and make it better

good evening Donna, Charles and everyone

Donna:  have you talked in the past about your water filtration choices and set up?  I’ve seen those stainless steel ones in many places and would appreciate your thoughts. Why 2?  

I’m trying to visualize a Birds Eye view of your flat.  It would be terrific, if not too much, to see a little sketch of the layout.  I got a new knee last Monday and am interested in having a good, but not too large, of an area to set up for the first month or so.   

Lissa

Lissa G, We have two stainless steel water filters because we bought one for the little tiny house that we built out of an old work shop so that we had a place to stay overnight for when we needed to do repairs and yard work up at Charles mothers house.   After Madge passed away we brought the water filter back to our house to keep the filters usable and not dry out.  We take filtered water with us when we go up there to work or out running errands. 

Charles and I do not drink sodas or purchased drinks, just water, coffee or tea from home.   We have a routine with refilling the water filters each night and we have a two gallon water crock we fill with filtered water. We use the filtered water for cooking and drinking and the extra filter is a big help when family comes for a visit with extra cooking. One of the water filters is enough for our needs but has to be refilled more often so the extra is a bonus. The water crock with bottom spout helps a lot with keeping extra filtered water. 

Our "flat" is 15 feet seven inches by 18 feet 4 inches.  It is an open kitchen and dining room with a bar between the kitchen and dining room.  We walk through the living room to get to the bathroom.  This is not for everyone to do but with just Charles and I here and the need to keep the utility bills down this works for us to heat and cool this area and not the whole house unless we have visitors.  When the weather is nice the whole house is open an used.  Also we use portieres, (curtains) over the doorways instead of closing the doors to control our heating and cooling and this way the pets can walk through the house without closed doors.  Everyone's needs are different so we all have to find what is best for us.  

To all, Also about hospital beds. Warning. this may be too difficult for some to read, it is about caregiving.  

My father was the first for us to care and we brought some of his furniture to our house for his bedroom when we moved him here.  He was living in Tennessee and we are in southeast Alabama. We fixed up his bedroom with his familiar things from home. He had strokes and why he moved in with us. He had another serious stroke and pneumonia and he declined.  Then he got worse and the doctor wanted to put him back in the hospital and he became agitated and kept making "no" motions. I took a tape recorder and recorded him talking to me so I could rewind it and figure out what he was trying to say. He said "Mistake" he had let them put in a feeding tube in the hospital and he did not want it, said it was a mistake. He wanted to stay home and said "no more" and "cane".  Finally when I figured out the word cane, I said, Dad, you cannot walk due to your stroke, you do not have sitting balance or cannot stand.  I got a different look like "I know that".  I asked do you want to hold your cane? and yes, that is all he wanted.  Just to hold it.  After that I made a picture book for simple things to ask about.  I have told Charles to never forget about the picture book in case I have a stroke. 

At that time we did not know a lot about hospice or how it worked so we got home health nurse that would come to visit some care when needed but one day she came and said we did not need her, we needed hospice.  She knew he was in a serious decline and I was terrified!   She helped us contact hospice and he needed a hospital bed.  We put the hospital bed in his room.  *First lesson, After my dad passed it was difficult for the coroner and his helper to get Dad out of the bedroom due to the turn in the hallway.  I never let my mind get to the point to think what would happen after my Dad died.  They had to wrap him in the sheets and lower him down to the floor and slide him to get him out to the living room to put him on a gurney to roll him out of the house. 

My mother was next in care and up until the need for a hospital bed, her room was the bedroom with the half bath. My mothers care was seven years.  At first I drove to her house for several years, but then she could no longer live alone. We set up her room here, I painted the walls her favorite color and fixed it pretty for her. She had cancer and after surgery it did not spread but she had dementia that was getting worse. When she no longer could walk she needed a hospital bed so I could care for her easier. At first it was put in her bedroom but she climbed out of the bed several times and I had to watch her close.  I put a floor alarm so I would know when she was up out of the bed.  She thought we lived in a bank I worked as a teller.  Some days she asked if we had a bathroom in the bank. Too much to tell about this part of caregiving.  When she was at the stage of needing hospice we moved her hospital bed to the living room where we were close to her around the clock care. Moving her to the living room helped me with doing laundry and cooking and I could hear her and pop by the doorway and see her.  

With Madge's care, her room was in the bedroom and we had a comfortable chair and television so she could watch her favorite shows and football.  She walked around the house and sat at the table to eat with us and we had fun music dinners.  But then she declined rapidly after a stroke that turned into brain cancer diagnosis and a hospital stay that turned into a ride home by ambulance.  We had hospice set up a hospital bed in the living room because she needed around the clock care from Charles and I and Charles was still working.  It was only me there until night time when Charles came home from work and that was when I could get some laundry and cleaning done. This was all too familiar.  

Madge had a lot of agitation and needed to be watched closely.  The hospital bed location depends on the circumstance and the whole picture.  They do not normally go into a hospital bed until more of a decline and if it is just one person or two taking care of that person the need to be close is important.  At night I slept on a cot next to Madge's hospital bed because Charles needed to sleep so he could go to work. Charles would sit or lay down on the cot after work to sit with his Mom.  I could not have cared properly for any of them once bedridden without the hospital bed due to turning them, changing diapers, bathing and skin care, pulling them up in the bed. 

Charles great aunt remained in her home because that is what she wanted and to be with her two cats.  At first Charles was her main caregiver as he would go by her house twice a day for several years and help her with medications, groceries, helped her with paying her bills and such and at this time I was caring for my mother. Charles Aunt lived only about six blocks down the street.  His great aunt was diabetic and had macular degeneration at that time but then she was diagnosed with pancreatic cancer and  as she declined and the need for hospice, a hospital bed was put in her living room and family members took turns staying with her.  The sofa and chair was in there, and stretching out on the sofa with a pillow was welcomed relief for the family members helping to take care of her. The television was also in that room and she liked to watch her stories and listen to the local news.  This is what worked out better for her.  

These are things to consider, there is no solid this is the way to do it because each situation is different and also their age, is this a older person, a child or a young to middle age and what is t heir mind like? 

The one thing is that with proper caregiving there is no isolating the family member, with the responsibility of taking care of that person the one thing to keep in our mind is what if this was me that needed care?  That helped me get through my days, how would I want to be treated?  They cannot help the situation that they are in and this situation maybe fast, or long term but there will be stages.   

One last note, hospital beds are longer so make sure twin sheets are long enough for the bed.  

The picture sketch is for Lissa G asking for a sketch for our flat, nothing to do with our caregiving. 

Hi, all,

GDonna gave a good description of caring for someone at home. I’d like to add my experience:

I cared for DH at home until it became impossible. His home worker could no longer manage him well either so we all chose assisted living, which DH agreed to. We had a hospital bed in a downstairs bedroom and the home worker and I dismantled it then put it back together at assisted living.  When he needed a nursing home, about a year later, we donated the bed. Check senior centers if you have one. In our rural county they have walkers, canes, shower chairs , wheelchairs and more to give away. 

When he had to be in ER and ICU twice in a week and they could no longer control his Type1 diabetes, we chose hospice house (rather, he chose this and we agreed). The people at hospice are wonderful. He was catered to like a king. I stayed with him all day, and family came to see him as often as they could. This included our grandchildren, even the three year old. They had a beautiful garden that patients could see from their windows and quiet seating areas in it for family. A doctor has to approve hospice and whether one gets home hospice or hospice house, but they tend to follow the family’s wishes where possible. Medicare paid completely for his care in hospice. I was allowed to sleep in his room at night in a pullout bed and shower in his bathroom. He lived for a week there. When he passed they notified the funeral home for us, prepared the body and gave our children and me time to be with him before his body was transported. A nurse gave us big hugs and prayed for us. 

I know some here have hospice house experience but for those who don’t, I thought I would give you information on how it works at hospice house. 

Grandma Donna Wrote, 

Joan S, thank you for adding to this because I have wondered about the hospice house in case we have a situation to where the other cannot do the care any longer.  I am so happy that you found a good hospice house and were able to stay over when you wanted to stay with him. Your husband probably felt relief knowing that this was easier for you and him as well when it got to that point of needing more help.  This helps our concerns for the future.  Medicare did pay all of the hospice expenses for us as well. 

I’m glad I could help !  I forgot to add that they had a Veteran Service officer there and DH received a short service performed by vets, including a flag, medal and a quilt of honor, which was an afghan but very nice. And we were allowed to bring photos and such for his room to personalize it for him and give him familiar things to see. Our young grandkids were given cloth bags made by volunteers filled with small snacks and toys, and we were invited to join the staff at their weekly afternoon tea. 

Joan S, I also appreciate what you wrote about the hospice house.  One thing I am realizing is that with all of my family members who have died, most of then didn’t express wishes about hospice.  The ones in the past 20 years did have end of life care plans, but only my stepmother was able to make her own plans, because when they had no other options to treat her cancer she went on hospice at home and decided that was where she would stay.

Mostly it seems for my family hospice has been much shorter term, from 48 hours to no more than 3 weeks — these are the situations where no one had made a plan, so family members had to dedide.  We tend to assume people are going to want to be in their own homes, and that caring for them will be easier in a home (their own or a family member’s).  In truth, I don’t think that is always the case.  There are so many variables and I know for some of my loved ones, a hospice house or hospice wing would have been a better choice.

Now I am thinking that if I have a long term situation that requires hospice, I will choose to be at home, with plans to move to a hospice wing closer to the end.  If it is a short term situation I am telling my family I would prefer a hospice wing.   I know there is a feeling of wanting to take care of the person and allowing them to die at home, and I know dying at home can be beautiful, but I also know how hard it is to be the person dosing the morphine, how difficult it is to get the sound of the death rattle out of your head, how overwhelming it can be to have your house overrun with people waiting for someone to die and feeling like you are playing hostess to overnight guests in addition to caregiver.  I want to make it easier on my family, and I think having hospice caregivers in a dedication hospice wing or hospital would be best.

One more thing, I think we sometimes want hospice at home because we are worried someone will die alone and we think that’s terrible and want to prevent it.  But I’m old enough now and have lost enough people to know we don’t have that kind of control.  It’s true, some people slip away easier with loved ones telling them it is okay to go.  But others can’t slip away until they are alone.  One family member died 30 minutes after we’d left them at the hospital, and we’d been talking to them before we left!  It was completely unexpected.  The nurses explained that for some people, that’s common

Kimberly F. , yes, the hospices nurses suggested we leave DH alone for short periods, telling him we were leaving and how long we would be gone, because some people don’t want to pass in front of their families, and that gives them the chance they were waiting for. So even though he was unresponsive after day 2, we always let him know we were stepping out of his room for a few minutes. They stressed that he could almost certainly still hear us up to the end. In the end, he passed at night with just me there, reading the Psalms to him and talking to him. 

gdonna, thank you very much for the drawing!   My mind just couldn’t turn the corner to visualize the bed.  It all feels so cozy.  I got my new knee last Monday and can easily see how reassuring it would be to have things close by and in reach.  

I have so many thoughts about end of life planning so I’ll be back with them when I’m not sad with my shiny knee ( day 5, lots of string drugs and pain still not controlled at all).  

Donna, I so admire how you and Charles have planned with the goal of making things as easy as possible during and after the passing.  I am so terrified of being alone and remember being lonely for much of my life.  I have wonderful relationships with my daughters and their husbands.  I worry about being a bother.  My dad was diagnosed with prostate cancer at 39 and died age 64.  His medical case was unusual and he was cared for and presented at ground rounds many times at MD Anderson.  His pain was hideous.  He had end stage cancer pain for nearly 6 years.   The hell he and my mom went thru was so traumatic and I live in fear all the time now that we’ve reached 70. My husband went thru 5 infected back surgeries 2 years ago and had a 3/4 length fusion done end of August.  He gets around but will always be disabled and it’s so very sad.  And now my knee.  We are blessed to not have money worries but a lot of grief for things lost. I feel such guilt because it’s hard to look at his suffering and bear it with him because of the past memories with my dad.  My dad wrote in his journal about the guilt he felt for being the one to mess things up by getting sick, how, in marriage, what happens to one happens to both. 
Guess I said more than I had planned.  It’s a topic that has a rawness that’s hard to share with your friends and adult children.  Thanks for being out there to listen.  Lissa

Grandma Donna Wrote,

Lissa G, we are here to support one another, it is good to discuss things to help work things out.  I know there are several others here that completely understand the knee surgery, and the spouse and or parent living with painful conditions so many of us understand. I am watching Charles painful arthritis get worse and he worries about me and my health issues so we are working at a slower pace, but still in the right direction.  

I feel that it brings up that we really should do our best to declutter our home to make it easier to be able to take care of our home and ourselves and especially have our paperwork in order. However, not when you still have a shiny knee but once you heal. (Group Hug) 

Lissa G, my husband had knee replacement in July and he had severe reaction to the pain medicines and was in the hospital for 4 days from that.  They tried different meds but he didn't do well and ended up with plain Tylenol.  He did ask the doctor about using Salonpas and he said that was okay, but not to put it on the incision and that helped but not with the deep pain.  I would recommend you contact your doctor before using anything like that.  When he went back for his checkup, I think that was at 6 weeks, before we said anything, the PA asked are you still having pain and can't sleep?   We both said YES!  He said you are right on track.  They don't tell you all this stuff before hand.  Hang in there!  I wish you less pain and a quick healing.

Also I am slowing decluttering.  It makes me feel good ever time I can take out a bag or box of trash or give something away.  I also have a pile for yard sale.  

This has been a very interesting article and I have appreciated all the comments to learn how everyone is or has done things.

Thanks.

This has been so interesting.  I never thought of having to round corners if someone passed in our back bedroom.  Thankfully, the worst room for that in our home, is our work-out room where we have weights and a machine.  But our spare bedroom is across from that, both of which are in an alcove-type entrance, but would be fine.  Definitely good to know. Mentioning that we have the 2400 sq feet (wishing I had 1200), the other 3 bedrooms are used as 1) spare bedroom, 2) work out room 3) office.  I really don't like my office down there, but it is the brightest room. So all rooms are used. It's just a lot of work walking back and forth as our house is long.  My mother was in hospice at her home, but she lived in a different state. They had her in the living room straight in from the front door. She did have a nurse daily, but for the most part, her husband's family took care of her (as respect to him). I just couldn't be there.   Just never would have thought of all the angles and tight corners!  Love your set-up Grandma Donna! I often fantasize (if I was alone), truly closing off the living rm/master bed/bath and just living on the opposite end. That would be about 1100 sq feet. When I told my daughter's husband that if something happened to my husband, that they can have the house and we'll just divide it in half. Just give me a kitchen where the laundry room is and I'll take the smaller side.  He said to my dd later, that that was so dumb, because I'd just live with them. LOL. He's so sweet. But I would like my privacy. :)

All this talk about hospital beds and corners reminded me of a funny story in a local rural newspaper.  The writer was the one it happened to.  He had been outside doing some work and started feeling odd.  He decided to go inside and lay down on his bed.  I think it was his wife that came home and couldn't wake him up so she called 911.   Turns out his blood sugar spiked and they found he had diabetes.  Being in a small town, the EMTs knew him and told him that they had terrible struggle getting him out from the back bedroom to take him to the hospital. So, when he wrote the article, he mentioned that he was a big guy.  Something like 6'3 and about 270 lbs. and he could only imagine what a hard time they all had getting him out - I seem to remember several more people pitching in to help.  And he ends the article with something like, "and I promise that if I ever feel oddly again, I'll go lay down under the maple tree in the front yard to make it easier on them!".   It gave my husband and I a good chuckle as my husband is taller, but not as heavy.

This week I imagined I was a 1942 homemaker tasked with coming up with frugal decor for a Valentine’s Day school party or perhaps a dance.  Buying materials would be out of the question!  I saw a photo of a bunting made from playing cards and ribbon, which I knew I could make without having to buy anything,  I have lots of ribbon, some from Buy Nothing and also many medium lengths of sheer ribbon from Christmas packages.  I asked on Buy Nothing for a deck of cards that was old or incomplete and my neighbor just 4 doors down had a set for me.  Since Valentine’s Day is now past I will put the bunting away, and next year I’ll hang it over the picture window in the living room with the help of a tall family member.

Just out of curiosity, does everyone decorate for Valentine's, Halloween, and all the rest of it?

Pam, we were Waldorf inspired homeschoolers, which is sort of a double reason to decorate — kids in schools have decorations and we didn’t want to miss out on that, and Waldorf education has a focus on many festivals throughout the year as well as adding decor for the season.  My kids are adults now, but I still have the things we made and purchased (usually second hand) for various holidays and festivals, and sometimes I even make more because I love to make things.  It turns out I love having a rhythm to the year and changing my home subtly to reflect the liturgical seasons and observances.

Starting with Advent, we have very simple decor for that, I mostly just put away our usual things and set up the Advent wreath and Advent spiral.  We decorate for Christmas with the tree and Christmastide decor as close to Christmas Eve as we can manage.  After that comes a combination of Epiphany/Winter/ Birthday, then St. Brigid/Candlemas/Valentine’s Day, then it’s Ash Wednesday and Lent.  After that it’s Easter and birthdays, then our summer decor, which is really just a few shells and whatever flowers we can pick in the yard.  We have a lot of fall items since we always started our homeschool year on the autumnal equinox and would have a celebration.  We have a few Halloween things, but mostly we add an ofrenda for Dia de los Muertos to our fall decor and light a memorial candle every night in November, then we come around again to Advent.  Weaving through we set out things for May Day, Fourth of July, Lammas, Michelmas and Martinmas, and many other liturgical observances and little holidays and always solstices and equinoxes.  We celebrate Dia de Reyes/Three King’s Day, and Fat Tuesday, which we call Pancake Day in the English tradition — both of those get a special yeasted cake.  We honor Our Lady of Guadalupe in December, and St. Nicholas too.  We do fun things like eat some sort of pie on Pi Day, and we celebrate name days and some of the Saints, as well, and sometimes we remember other observances like Darwin Day (but not this year — we were super busy).

With an earlier Easter this year, the past few days and the coming few days are a whirlwind!  We celebrated Friday the 13th and Valentine’s Day, today was the last Sunday in Epiphanytide, Tuesday is Fat Tuesday and the traditional pancake fundraiser dinner, Wednesday is Ash Wednesday and the beginning of Lent, which means I’ll be baking hot cross buns.  I’ll take the Valentine’s Day decor down tomorrow or Tuesday, set up the Lent garland and Stations of the Cross, and “bury” the Alleluia.  Lent is very pared down for decor, the entire focus is the stations with the purple and white garland.  I take down the mirrors we hang in the living room for Christmas and hang the photographic prints we have of cacti, as a nod to the desert.

I love doing all of it, and for the most part it’s mostly just decorating the mantel and hanging garlands.  I don’t put decor in every room, just the living room and a little in the dining room.  After all these decades, even my husband mentions how much he likes the little changes throughout the year.

Kimberly,  I love how you accent the house for the seasons.  It was always something I inspired to but never seem to find the time.  I did have quite a bit of decor but I could never keep up. Halloween would come & go and the pumpkins weren't even out yet! Now I keep it simple and put out a few things throughout the year.

Kimberly, thank you for that - I'm amazed.  This year I didn't even bother with the few Christmas decorations I have that mean a lot to me.  I just didn't have the oomph in me to do it.  We don't ever decorate for anything else, and have never done so - I think perhaps there are the odd few here who do it, but rarely something people do.  My folks never ever decorated anything when I was a child, and nothing like that was celebrated, just accepting the seasons as they came and went.  That was the norm for most households.  

Halloween has always been something of a hit and miss here, and only in the last few years have some embraced it - it's not an Australian tradition but the shops love to push it - mostly though it all ends up in landfill.  You'll probably see a few flags flying for Australia Day but that's about it.

Kimberly, I do have to add here that I really have no idea about what a lot of those occasions even mean, I've never heard of most of them before.  Happy to have you explain?

Kimberly:  I assume you are Roman Cauc or Greek Orthodox?   As an Episcopalian, who has drifted a bit, I adore following even a loose liturgical calendar for the year.  Pam:  Google liturgical calendar.  I adore the color coding on the calendars; Pam the colors represent important seasons and celebrations in religion. It is lots of fun and helped me a lot with being more focused in faith.  Any Christians can pick and chose if they want to use parts of the seasons as an expression of faith.  Lots of people give up things for Lent. A time of sacrifice in preparing for the death of Jesus.  My vegetable hating 6 year old “gave up vegetables” for Lent.  Haha.  Her sister gave up sugar cereal that year. I try to “add” things.  One year I got rid of/gave away 40 things for 40 days.  I learned a lot about myself and wanting vs needing and charitable things to do with homeless.  

But, I adore the idea of decorating for Dia de los Muertos (day of the dead).  We were in San Antonio once for it and was great fun.  

I have to say I'm gobsmacked - can't say I'm religious by any means but definitely a Christian - I just don't 'do' churches these days.  Very interesting, all of it.

Lissa G, I’m Episcopalian as well, my parish is more high church and I personally have a strong Marian devotion, though not all Episcopalians do.  I’m definitely on the liberal Anglo-Catholic side.  Waldorf has a long history of celebrating various Saint days which is how those originally came into play for us, before I really started exploring the liturgical calendar and adding more on my own.

Honoring Dia de Los Muertos is cultural for us as a family, and I love how it ties in with The Feast of All Saints.  For our ofrenda I buy marigolds and also we set out little treats our ancestors loved, along with putting up photos.  We have a plain glass votive candle (the kind about 8” tall) and I write the names of our ancestors on it and we light it at dinner each night in November (which is the month of Holy Souls in Purgatory in Roman Catholicism).  There is definitely a lot of Roman Catholicism mixed into our observances, as my husband was raised Roman Catholic, and on my side my maternal grandmother was RC and on my paternal side they were RC for centuries (millennia?) starting back at my great-great grandparents.

I love that Lent has gained more attention from various denominations.  Sometimes I give something up, sometimes I take something on, I try I do both.  I try to keep it spiritual and not use Lent as a diet, lol.  This year I will be abstaining from social media, because I recognize that it is a time suck that pulls me away from God.  I will be adding spending time outside everyday, probably praying The Rosary.  I like the abstinence and addition to complement each other — what do I need to remove from my life and what do I need to put in its place.

I also sometimes honor my Jewish heritage by baking challah.  Really, I mix it all up.  Definitely there are a lot of Christian observances, but our solstice and equinox observances are more pagan in nature.  Some observances are mixed, with the Christian overlaying the pagan, such as with Lammas.  We do US holidays and special family days.  Life is an amazing gift

I really don’t spend huge amounts of time decorating — most of the time it takes 15-30 minutes and I do it when I am dusting, so I’m moving things around anyway.

Growing up my mom did a lot of decorating for Christmas, and that was it other than a shared pumpkin for us to carve on Halloween.  Everything else I’ve added as an adult.

Kimberly:  I confess I got all twitchy with delight reading about the yearly flow in your home.  I found myself wishing you had a movie version so I could see how you do everything. Hahaha. Can u elaborate more about your ancestors and what you do. Like a stage-play with the lines.  ????. Are special prayer or observances done at meals?   I read something interesting about aging and the perception of time.  Years feel long when we’re young: there are more landmarks in a school year so time spaces out.  In the oldie years days tend to blend seamlessly so if feels fast but uneventful, perhaps boring.  Living with more muddled seasons makes it worse.  

Just in the past decade I have some “dab-doos”(name from granddaughter) I put out for each holiday and it makes me happy. And everything fits all in one cabinet so it’s not a big process. I think it would be heathy for me and my husband to develop more rituals for our next decade. We had a long list of big trips we were looking forward to and I need to stop be grumpy about the list and find easy things to make weekly living more interesting. I know folks that seem to be shuffling along kind of waiting to “croak”. 

when I was 5-6 years old I wanted so much to be Catholic; my BF went to parochial school and oh my, I wanted a school uniform and to abstain from meat on Fridays and go to mass   After that we moved to the Cleveland area (Shaker heights) where many of my classmates were Jewish which was fascinating.  I remember peeking out the windows while our neighbor boy’s Bar Mitzvah was being set up.  Grandpa’s  Methodist church and our low church Episcopal church was boring as could be.   

Grandma Donna Wrote,

Lissa G, you could be a writer of many books if you are not already because you have a way of writing that makes us feel the emotions of what you are writing. We need some more landmarks in our life. :)

Kimberly F, I think that it is a very good thing to mark the yearly events in some special way instead of just passing over them.  My mother changed curtains when a season would change.  I have some fabric in my box of projects to sew that I have been intending to do for several years now.  It has small red Christmas trees on the white fabric and my plans have been  to make curtains for our kitchen window.  Just yesterday I refolded the fabric, missing another Christmas without those curtains.  :)

awww Donna.  That was a delightful compliment to receive.   Thank you very much.  
The way you change your bed linens fits exactly with making small changes that reflect the days passing along in the coveted flow.  

Donna: did I spy a red/white flannel pillow case on one of your chairs?   I looks like a sheet set I bought for the guest room

Lissa G, really, we just tell our ancestors / loved ones stories.  In November, with the candle on the table and their names listed, we find it easy to choose someone and share the stories.  For our children, some of our ancestors they only know through photos and stories, and sometimes that is from us sharing stories that were shared with us — my husband’s grandfather died before he was born.  But over the years his dad shared stories with him, and then later as adults when we would see extended family they would sometimes share stories too.  I also love when our children share stories that we ourselves either didn’t know or don’t remember in the same way.

So I don’t really have a script for you, other than when the children were younger we would often start with something along the lines of, “Did you know that your [relative] used to be a [fill in an interesting occupation or hobby] when they were [fill in age]?  It could also be a place they lived or traveled to, something they did in history, etc.  The idea was to connect with the children and make our loved ones feel like real people to them.  These days we tend to go down the list of names and spend our dinner remembering them, the good memories we have, and the lessons they taught us.  If there are ever grandchildren, I imagine we’ll go back to scaling the conversations to their maturity.  And they can be such simple things — Did you know your grandma was a member of the USO?  Did you know your grandfather knew how to hunt and then to cure the skins?  Did you know your grandmother was a flapper in San Francisco?  Did you know your Grandfather earned the Purple Heart?  Did you know your grandma’s favorite candy was Necco wafers?  (We put these on the ofrenda every year, so they do know.)

(We do briefly add to our evening blessing by reciting an Eternal Rest prayer.  From the BCP, it is the following:  Father of all, we pray to you for N., and for all those whom we love but see no longer.  Grant to them eternal rest. Let light perpetual shine upon them. May his/her soul and the souls 
of all the departed, through the mercy of God, rest in peace, Amen.  But I often use the shorter Eternal Rest, grant them O Lord and let light perpetual shine upon them.  May they rest in peace.)

I am probably the last person my family and friends would have expected to become a liturgical Christian with a deep tradition of home observance.  It is not the faith expression I was raised with, and indeed I was taught specifically against liturgy and ritual.  I believe God chooses where to meet each and every one of us, and for me it is in Christian liturgy, but I fully acknowledge that what God chose for me doesn’t mean it is the best or only way — an infinite God has infinite ways of connecting with us.

I’m certainly not immune to time passing quickly, but I do think that seasonal, liturgical, and holiday observances help slow things down because they help us be in the moment.  Today I took down the Valentine’s Day decor and hung the purple garland, put purple candles in the candlesticks, and set up the Stations of the Cross on the mantel in preparation for Ash Wednesday tomorrow.  That all means today is Fat Tuesday — and as such I am present to today.  The dough for the King Cake is chilling in the refrigerator to make it easier to work with, and soon I will shape and bake it.  We’ll go to the pancake supper fundraiser and be in community with others who share our faith expression.  After that we’ll come home and have King Cake.  I already had a couple of cookies today, lol, knowing that during Lent I abstain from sweets except on Sundays, not as my chosen abstinence, but as part of the penitential season.

(We are a very small family, just three of us at home now, so I will use the dough for a small King Cake and a half dozen hot cross buns.

Grandma Donna, I would encourage you to make those curtains now!  One thing I have found is that I tend to put off the holiday sewing until closer to the holidays, thinking I will have plenty of time, only to find myself without the time to sew.  Once again this year I didn’t sew the heat resistant table runner I had wanted to make for Christmas.  Remembering that this always happens to me, I decided to sew it in early January.  Now it is finished and in the drawer with the Christmas napkins and placemats, ready for December!  I’ve had the fabric to make a Forth of July bunting for more than a decade, but it always sneaks up on me and ends up un-started, so this year I plan to make it in May, and I have plans to do some Halloween sewing this summer.

I change out the curtains in my breakfast nook every month, but I didn’t sew them — I use tea towels hung with clips on cafe curtain rods.