Caring for spouse with dementia. Anyone else going through this?

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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 AZ 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?

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You are right,ShirleyB. I write a newspaper column on elder care and do have many spousal caregivers who are loyal readers, so I try to address their needs, too. Yet I also try to send them to websites that are specifically for them since they often tell me in their letters to me that they feel left out of much of the advice.

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.

I am 75 and my husband is 80, we have been together for 55 years. I am the one who is the patient with Dementia. I am usually pretty good, and he takes very good care of me. I can't do to much except work on the computer. I also take care of myself and make my bed & clean my bathroom. He does the cooking, and we have a lady that comes every two weeks to do the wash & clean the house. We have all decided that she will start giving me personal help when the time arrives. We get meals delivered 5 days a week & my husband takes care of the weekends. I get around with a walker. He lays my meds out for me & serves each meal. Since I haven't read of a combination like ours, I thought I would bring ours to the fore front. We have made plans for the rest of our lives, whatever that might be, and we are happy & satisfied with our decisions.
I have been caring for my husband for the past couple of years. He can still take care of his personal needs and do a couple of simple chores. He has begun hallucinating and doesn't always know who I am. Lately he has become aggressive. Hopefully they can find a medicine to calm him down. I take him wherever I go since he can't be left alone. He does sleep through the night which is a blessing. I have 2 sons nearby but they travel a lot for their jobs and have families of their own to care for. Yes, it's a difficult time. I am 77 years old and my spouse is 80. I'm not sure what stage of the disease he is in. Doctors don't seem to have many answers.
I care for my 91 year old husband. He is a gentle soul and it is both my pleasure and privilege to be able to take care of all his needs. He is immobile, incontinent, has a stoma and difficulty with swallowing, so his liquids have tyo be thickened. We are fortunate in having a wonderful occupationaltherapist who has organised a hospital bed and hoists so I can move him from the bedroom to his favourite chair in the living room. His latest delight is a recording of childhood memories his much-loved sister has made (she lives on another continent) which he hears with a wonderful sense of joy every time we play it. I read to him and every night burn lavender oil, which seems to help peaceful sleep. It certainly calms him down when stressed and we hardly ever need diazepam any more. Love makes caring so much easier.
There are no simple answers, but there may be useful tips. My wife has been bedridden at home for more than 4 years with dementia, and most of the time she knows who I am. Some days are better than others and the occasional smile I get from her is priceless. She cared for me when I had polio 65 years ago and it's my pleasure to help her today. Here are things I’ve found helpful.

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.
Ten weeks after retiring from 40 years University teaching my husband was diagnosed with LBD. That was four years ago. I am truly lucky because I live in Alberta, Canada and our health care system has a program called "Self- Managed Care". Every month I receive $5,900 CDN to pay our live-in caregiver. I became her employer and am responsible for paying the employer share of pension and insurance all of which is covered by the monthly amount (I pay her $19/hour). By her choice (she supports an extended family in Kenya) she works Monday, Tuesday and Thursday from 10 am to 10pm and Wednesday and Friday from 3 pm to 10 pm. My husband attends a Day Program on Wednesday and Friday from 9am to 3pm. I take over the care of my (71 year old--I am 61 years old) husband from 10pm to 10am and the 24 hours of each weekend day. I choose not to change our caregiver for room and board etc.
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.

Yes, I do find that to be true. His moods definitely copy mine. I also make a real effort to remain cheerful, smile a lot and touch him often...just a pat on the shoulder, hand on his cheek or some such really makes him happy and also much calmer. I guess we all have to learn these things over time. Caregiving of a spouse who has any form of dementia ( I don't care what you call it) is almost like having a 4 year old around all the time. Especially if they're physically well. They get restless, worried, cranky, tired, wired and cheerful just like a little one. Back then, when I was raising my 6 kids I noticed that too. They mirrored my moods, some more than others. So I find my self reverting back to the methods I used to handle them and it works. Even just taking a few minutes to chat with him periodically during the day seems to make a big difference.
Jeannegibbs is one who has walked in your shoes and you could seek her out or query her and try to connect. If you post under "Questions" vs discussion--you'll get more relevant responses and you can always politely ask for responses from spouses who've even thru this or are going thru this.
I care for u husband, he has had numerous strokes and now has vascular dementia. He doesn't walk anymore and his mental status has been going steadily down. He is only a stand pivot on the best of days. Yes, it is hard,but, I am blessed to be able to care for him at home so far with the help of the VA.

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.
I am caring for my husband with early onset Alzheimer he turned 60 2 weeks ago it is very hard and very lonly. I am caring for him without any outside help ,no fam and friends. As they all found it to hard. Hang in there. And get yourself lots of hobbies so you can keep your mind busy xxxx

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