I'm relatively new to this website but have noticed something that makes it nearly unusable for me. Nearly all of the discussions are based on caring for aging parents. I am caring for an aging husband who has Alz and has had a disabling stroke which left one leg nearly useless. He Must now use a walker at all times. I think caring for an aging, disabled spouse is much different than caring for parents. Does anyone have thoughts on this?
While the physical care isn't all that different between spouses and adult children caregivers, the emotional part if vastly different. I watched what my mother went through with my dad so I've seen that kind of agony though not experienced it - yet.
Well Spouse is a good site for many and I was glad to read about Alzheimers Spouses (above). I'd look into both of them if I were in your shoes.
This is a heartbreaking way for a marriage to end. My heart goes out to you.
1. She has an all electric bed. (thanks to Medicare)
2 Low volume music plays in her bedroom all day.
3. She takes 250 mg/day of Acetyl-L-Carnitine, a brain antioxidant.
4. We set up a walk-in shower. A shower chair with open (toilet type) seat and wheels is used to transport her from bed to shower.
5. Skin itching issues are minimized by moving her around in the bed and keeping the sheets and clothing free of wrinkles. Most skin problems were resolved with Xeroform and/or vaseline.
6. Daily use of Miralax resolved bowel problems.
7 Cranberry tablets and cranberry juice help minimize UTIs.
8. Most importantly I have daily help from family members. They do the things I cannot do because of my own disabilities.
This is my second marriage. My first husband died when I was 34 years old.
I have a number of chronic illnesses--PTSD, chronic pain syndrome, chronic fatigue syndrome and now, a new diagnosis of high blood pressure and a heart murmur.
I choose to give up my highly paid and highly prestigious employment to care for my husband. Even though I have all this "free" time I am truly never away from caring for him. His social life is busier than mine!! We are so lucky with the friends he has -- neither of us have family in Canada. One couple take him to see a movie every other Saturday. Another friend/colleague takes him to brunch the other two Saturdays. He also has a volunteer visitor who takes him out two afternoons a month. (As I write all of this down I am aware of how many of you are totally alone, without personal, professional or financial support and I have to ask myself what gives me the right to feel stressed all the time.) Since he is no longer able to drive I am his chauffeur but when I leave him with his friends I get a chance to go grocery shopping etc.
I am/was a Palliative Care Nurse and started my doctoral journey a number of years ago. I am now reaching the dissertation stage. As part of my research I kept a two week journal as a spousal caregiver and then analyzed the contents. My biggest surprise was the realization of how much I am grieving--not for the loss of my marriage--I am more like his mother--and not for the loss of the wonderful life we had. What I AM grieving for is the loss of the life we should/could have had.
I agree with others here who have written about spousal caregiving. Caring for a spouse IS totally different from caring for a parent or even a sibling. My biggest heartbreak is watching the look of puzzlement on his face as he tries to interpret what is happening to him. When he is aware of our situation he apologizes to me--as if it was his fault. The only thing I can tell him is that this is our new reality, that it is not the life we would have chosen but we are luckier than most. We have a roof over our heads, food on the table and people in our lives who believe that he is of value, that he is loved and that he is important. This seems to give him some degree of comfort. We just have to learn to recognize and cherish the gems that present themselves in our new lifestyle.
Perhaps it is a bit close to home for me but my research topic relates to spousal caregivers and how the diagnosis of their spouse with a life-threatening or life shortening illness impacted their relationship with their God--whatever "god" might mean for them. I am not particularly religious (I have the Irish Catholic guilt with the Irish Protestant work ethic!!!) but often came across this topic in my work with terminally ill patients.
During my reading for the analysis of my two week journal one thing came up time and time again--If YOU, as caregiver, do not look after YOUSELF, you will be unable to look after anyone else. One of the greatest gifts I have been given is my sense of humour. Without it I would have died long ago!
Shirley, like your husband, you will have good days and not so good day, even good minutes and not so good minutes. That is the nature of dementia. The thing you might remember through all of this is that you can only do the best you can with what you have. Do not let ANYONE, not even yourself use the word "should". It has to be one of the most destructive words in the English language. This is a wonderful website. Visit often and take from it what works for you. Sorry to have gone on for so long. Sometimes I have to remind myself how much worse things could be. Take care and be good to yourself.
I am going into my eighth year caring for my husband, Dave..... It's hard, but,very rewarding. My saying is this.......everyday may not be good, but, there is something good in every day.
Let me know if u have any questions, I will try and answer them.
Take care of yourself to.
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