A Place For Caregivers

This topic is to have a place for caregivers to come together, this is a place to be with other home caregivers and find others in similar situations. I cannot give medical advice, I am not a doctor.  Medical questions need to be directed to your or your loved one's doctor. This is for talk about the day to day home life being a caregiver. I cannot counsel, I am not a counselor but I am a person that understands what it is like to be a caregiver.  I have been one three times in my lifetime. 

From Grandma Donna, I edited this January 17 to shorten this post. I was a caregiver.  First was my Father, with very concerning skin cancer that needed daily wound care then came mini strokes which led to a serious stroke. My mother was next.  My mother and father were divorced and living in different states which I was not living in either state. My mother was diagnosed with breast cancer just before the diagnosis of dementia.  She did not want to leave her home because she wanted to keep her independence and in a different town two hours one way.

They both ended up living with us in our home at different times a total of seven years. They remained in our home and passed away in our home in our arms. 

There were many firsts in my journey. Talking my Dad to wearing leak pads, later diapers, even a condom catheter. Being at my wits end and showing up at a nursing home to ask for the head nurse and sitting in her office with this lovely lady telling me to relax and that a calorie is a calorie is a calorie and baths do not have to be given every day, just wash the important parts, I left there that day feeling lifted that I could continue on. 

The one thing that finally stopped my mothers repeated questions was to give mom a life like baby doll with no clothes and ask her to please dress the baby.  My mother starting thinking I was a bank teller and we lived in the bank, a little girl with brown eyes lived on our porch and a Mr. Duggan was going to come to pick up the clothes she had in her lap at 1:30 in the morning.  She always asked if there was a bathroom in this place. 

I understand what sleep deprivation truly is and you walk around with a buzz in your ears. 

This forum is for you, anyone that is a caregiver, or is concerned they may become a caregiver and for those that have a loved one in a nursing home and you are exhausted going back and forth. My father passed away in 2001 and my mother in 2006 and Great Aunt it 2007.  It has been awhile but I understand caregiving and understand when you ask the doctor or others questions and get no resolution because you realize they have never done this.  If you feel this is the right chat room for you, come on in.  

Grandma Donna

I looked after my mother for 2 years in the 1980s. She had angina then a series of strokes.

Currently I'm caring for my husband who has Huntingtons Disease.

Karen, I have cared for several patients with Huntington's Disease and with the help of nursing assistants and other nurses, it was a challenge. To do this yourself with a loved one takes extraordinary patience and love. Bless you.

oh thank you for your sweet words Kathyrn P.

I am in this alone with my husband as son overseas and daughter has 3 small children so I am not putting this on them. I do feel mentally, emotionally and somewhat spiritually drained if I'm to be honest.  Holding onto the Lord as much as I can. He's early to mid stage. Poor poor man.

Karen, I can only imagine you feel drained. I know you've heard this (and am probably thinking, when do I have time?), but you have to take care of you too. Is there a company offering respite care that you could utilize? I will add you and your family to my prayers.

Kathryn P.

After 6-1/2 years following diagnosis (and of course seeing its hereditary was present from birth) we were finally given some funding for respite which I budget out at 4 breaks a year. It has been so eye-opening to see how many of us carers of HD people only find out stuff by word of mouth instead of a supposed support team. He has been once so far and to sort out the payment for the respite place was a huge stress. He only kicks off once in a while and now I know the time frame I prepare for it.  Other than that he is still his kind self. I can understand his frustration with memory and his speech failing him. It is mongrel disease. 

Karen, the medical communities need to do better. HD is a monster, both in how it affects the patient and the patient's loved ones. It sounds like you have a good grasp on his patterns. My heart goes to you both.

Thank you. It's just good to know someone else understands. Bless you 

I am caregiver, first at home, then assisted living, then in a nursing home, for my husband.  This started when he was in his early to mid sixties - he just turned 70 last week.  I also work full time out of necessity and have a commute each way.    He is a Type I diabetic and has had two major strokes and numerous "mini-strokes" due to his disease.  I had hired help the last few months he was home, before he went to assisted living, but the early mornings, evenings, nights and weekends were mine alone, and I was dangerously exhausted by the time he went to assisted living.  The financial side was also very, very difficult.  Our children are helping some financially and will give me breaks when they can, but they both have young families and full-time jobs.  More than that, they couldn't do, nor would I ask them.  

Walkers, hospital bed, wheel chair, diapers, bed pads, catheters, bathing chair, all became part of our household and routines.  Dishes were dropped and broken, cell phones ruined by confusion during use or dropping, and walls were gouged by wheelchairs while some doorway trim was broken. 

Dealing with finances is almost a second full-time job.  I am dealing with the VA, Medicare, and now, Medicaid, and it's overwhelming. 

This situation also took a toll on our marriage because the relationships change so.  I am now a nurse more than a wife, and our children have been parenting their dad.  The shift in roles has been difficult for all of us, and my husband is devastated by his lack of control over his own life and his dependence on me, when he was used to leading.  

This is the hardest stage in my life so far.  

Grandma Donna Wrote,  Joan S,  it is really hard to get a good perspective when you are in an overgrown forest and there are fires all about .  Fatigue and sleep deprivation can be very hard on our body, being only one person to handle everything for the household and income.  You must have been and still are mostly on automatic, trying to get through each day.

We have several blog/forum members here that have been through what you are going through with a spouse. I hope they can talk about how they have coped or not coped with their situations. 

I hope that your husband can get some counseling to ease his mind about losing control over things so you two can enjoy your times that you have left being together.  My biggest regret and guilt from my care giving experience is I wish I had smiled more when I was around them.  I always looked haggard and stressed because I was, but I wish I had been more presentable.  I cannot change those things now but I can share. Love and prayers, Donna

Dear Joan S

First if all I send you a cyber hug and hold you close.

I relate to you on so many levels particularly exhaustion, trying to protect our children from the hardship of it all, the finances, no longer having a marital relationship and the frustration that comes out in our spouses.

I am in this  alone. It took 6-1/2 years before I received funding for respite care.  Currently 1 week every 3 months.

My husband is at home and still functions on levels of habit and experience for which I am grateful. His short term memory,speech  eating and especially change in personality have impacted us both. I keep myself busy and like to be at home ..I have plenty to do with canning, sewing,gardening,knitting.

Please write to me anytime you need to offload.  I will be here for YOU. xx

Karen S.

Thanks!  That's so kind of you!