I am not handling this well for sure. I get so angry at my husband that he does not seem to know anything anymore. He has become almost 100% dependent on me. He does bathe, dress and make his bed everyday, but other than that it is all on me. If I do not make food and take it to him he does not eat. He cannot even do a simple task anymore. He cannot drive anymore, I have to take him everywhere he has to go. This man was the most intelligent person I have ever known and now he is like a child. I know I should be more compassionate, but I just feel so stressed and cheated all the time. I know that I still love him, I am just not sure if I like him very much. I know some of this he cannot help, but I do think he acts dumb sometimes just because. He is 84, and his mother and grandfather lived into their 100's. I am not sure I can handle this for 20 more years. My retirement years have been stolen from me. Of course this covid stuff has made it even worse as we just stay home all the time. Our daughters are so busy with their work and own lives they do not visit very often and cannot really offer help with him. He won't let anyone come to the house to stay with him. I have put tiles on his wallet and other things that he loses everyday, sometimes more than once a day. He constantly goes through his drawers and closet in his bedroom, moving things around everyday. I know he feels useless and I try to get him to help me at times, but he just frustrates me so I usually end up doing it myself. I have to say that I am 13 years younger than he is. I am sure this has a lot to do with my feelings of being cheated, as he has been retired for almost 20 years, me only 4 years and it has gotten so worse in the last two years. We were supposed to travel and enjoy retirement and he hates leaving the house and complains all the time we are traveling. I know all these things come with the disease. I am a retired nurse and most unfavorable jobs was in the Alzheimer's unit and guess what here I am in my own private one. I use this forum to vent, I have tried to find a group here close to me, but there are none within 40 miles. Of course with covid it would not be a very good idea either. Thank you all for listening to me. I feel so ashamed that I feel this way, but when I look at him I only see 20 more years of stress.
Your story is one that many of us have lived. Feeling angry, stressed, cheated, ashamed, resentful are all emotions we've experienced at some time or another, often at the same time. My wife and I were married for 52 yrs also before I lost her to this insidious disease. Your husband might live another 20 yrs even with his AD because of his family's longevity but you won't. When resentment sets in so does insensitivity to your husband's needs. It's time to look for a care facility. He won't accept that idea, few ever do. It's very, very hard to make that decision but you must. With your experience in an AD unit, you'll know what to look for.
Too long a sacrifice can make a stone of the heart-
William Yeats
I worked as a receptionist in a Memory Care Assisted Living community before the plague hit. We had many intelligent men and women residing there.....doctors, lawyers, engineers. Alzheimer's and dementia is an equal opportunity disease. It doesn't differentiate between intelligence, economic status, or anything else for that matter. It turns the sweetest people into angry, violent screamers who bear no resemblance to who they once were. It robs families of their mother's, father's, husband's, wives, brothers and sisters. It tears everyone apart and leaves a giant hole where there was once harmony and togetherness.
For that reason, placement often becomes a necessity for many. Before the caregiver is full of rage and depression herself and in need of medication and therapy just to get out of bed in the morning. You are trying to do yourself what 3 teams of round the clock care givers do in a Memory Care community.
While working at the Memory Care, I visited daily with lots of wives in your very shoes who reached a point where they could no longer do it alone at home, and placement was the only option. They'd frequently visit and take their husband out for lunch or dinner, and it wound up working out fine.
Look around at some Memory Care ALFs in your area and get your ducks lined up for after the plague lifts. That will give you time and something to plan for, and hope for YOUR future. There is no shame in placing a loved one.......I did it with my parents in 2014 and would do it again in a heartbeat. My mother is well cared for in her Memory Care ALF and she's 94 next month. Dad passed in 2015 but was well cared for in the ALF as well. I'd never be able or willing to do THAT level of care giving in my home for any elders. It's not something I'm capable of or interested in.....and that's fine.
I hope you can keep in mind that Alz/dementia is a disease that affects EVERYONE, not just your husband. We sometimes get so caught up in worrying about THEM that we forget about OURSELVES. That we matter too.....that our lives are equally important and should not be totally sacrificed for anyone or anything. Not when other good options for care exist.
Wishing you the best of luck in a tough situation. Sending you a hug and a prayer for peace, too.
Please try not to berate yourself about your feelings. You’re entitled to them. We need to vent. Living with a spouse who has Alzheimer’s is probably the most challenging life event we’ll ever face and that includes the two cancers I survived. My father died of gastric cancer. My mother, now 98, cared for him and it was tough, but his illness lasted four months. I’ve been dealing with this for more than four years. I suppose we’ll be getting help at some point. Right now we can share our stress here.
Then, for a couple of weeks, don't plan on any long outings. Start with only 10 or 15 minutes to determine the reaction. You leaving may produce tension, so the first couple of times, don't even go away. Just sit in the car and let the helper call you if you need to come back quickly. It's the same kind of conditioning you do with a dog who gets separation anxiety.
To observe behavior, you can get a motion/voice-activated nanny cam (disguised to look like a clock or a knick knack) for under $100 that records and will download any exchanges into your computer. Be sure to let the caregiver, but not the LO, know of its existence.
For many folks, the problem of payment often becomes financial. Unless you have LTC in-home insurance or qualify for VA Aid & Attendance (if your LO was a war-time veteran), gov't programs don't pay for most in-home assistance. That's why we end up being required to place our LOs in long-term care in order to receive financial assistance.
You already know what it's like to be a hands-on nurse/caretaker. Be assured that when you place a LO, you will still have all of the advocacy and management responsibilities, just not the 24-hour physical care. Once placed, it may happen quickly or it may take 6 months, or it may never happen, but they do get used to it at some level - - as you likely know, it's called "settling in".
There are professionals who can evaluate a patient's level of need. Unfortunately, the family caregivers' ability to caretake are generally not considered during those evaluations - - so you have to be really honest with yourself.
Don't base your decision on how much you THINK you CAN handle - - base it on how much you actually ARE handling. In actuality, a high percentage of caregivers die before the patient. At that point, the caregiver never had a life, but the patient continues being taken care of, typically in a facility, which is the very thing the caregiver died to avoid.
However, there does come a time for some, when placing their loved one in a facility is the best option for all involved. It does sound like you perhaps are at that point. You have to do what's best for you and your husband. There are no easy answers here. And only you can decide how much more you can take.
My husband, who had a massive stroke a year and a half after we were married,(he was 48 and I was 36), lost his ability to speak, read and write, and was paralyzed on his right side. We went through so many health hurdles over the years, including, seizures(with one he broke his hip, and had to have it replaced), essential tremors(in his only good arm/hand), incontinence, falling a lot, being diagnosed with vascular dementia, aspiration pneumonia(which almost killed him) getting sepsis and septic shock, and ending up completely bedridden for the last 22 months of his life, in our living room. It was a rollercoaster of a journey to say the least, and had it not been for my faith, family and friends, I could not have made it as long as I did. Did I do it perfectly? Of course not. I lost my patience too many times to count, but I did my best,(as that's all any of us can do), and I made sure that I was taking care of myself the best I could as well. My husband died Sept. 14th at the age of 72. I miss him everyday, and given a choice, I would do it all over again. Not because I like being on that kind of a rollercoaster, but because he and our love was worth it.
Praying for God's peace in whatever choice you make.
Covid has changed everything so most of us are isolated on two accounts now. I am blessed because I have a couple of friends that will let me vent and vent and vent until I’m finally able to get it out of my system and breathe with a little better perspective. They never try to advise me but instead let me get it off my chest. I’m wondering if getting a phone buddy would help OP emotionally, especially if that person was or had been on a similar path? Sometimes I just want to scream and I’m blessed to have a friend and a cousin who let me rip!
To many people suffer through caregiving and the deterioration of their own health for fear of losing everything and it is just not necessary.
A good attorney will help you understand how the money gets dealt with, ensure that you have enough to live and help with applications and resources if needed.
You matter as well as your husband, so he doesn't get to say no help for you. You need help with the day to day grind of caregiving, please seek it and implement it. I think that a housekeeper and a personal chef service are incredibly helpful for the caregiver and that is what you need, help for you, lest you fall ill.
Finally she and my brothers and I decided it was best he go to a nursing home. At first he fought it (most do naturally) but then he got to like it. He loved the attention from the young girls. He said how nice it was there. It was sad watching him decline and eventually forget his family, but it was the best decision we ever made.
You may not be ready to put your husband in a home yet, but I seriously hope and pray you consider it. You deserve some happiness and freedom yourself.
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