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.
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.
There is a possibility he may have the beginnings of Alzheimer's disease. When mom first got it 15 years before she died, her first real symptoms was a change in her personality. She lost interest in everything. I would take her shopping and all she wanted to do is sit and say she wanted to go home. She would sit for hours on end at home, and I really had to get on her to keep moving. She used to enjoy flea markets and consignment shops. No interest. Nothing. She just wanted to sit and go home. Her last five years were the worst--wandering, to the point she required 24/7 supervision. She eventually needed diapers and I had to manage everything including her bowels. If she did not poo, the fourth day she would be impacted. So I had to keep her on a strict bowel schedule. Her bowels were the worst part of her care. It was very stressful. Since she had kidney disease I used lactulose since I could not use milk of magnesia or any kind of phosphate-based laxative. Lactulose worked great on her and is kidney friendly.
But mom lived to be 90 despite her insulin-dependent diabetes, untreatable high cholesterol (she had liver issues so I could not put her on any kind of statins, and she could not describe bad side effects due to her Alzheimer's disease), and it was NOT her Alzheimer's that killed her, but other diseases -- she suffered chronic kidney disease for over a decade. She ended up with a feeding tube which took a LOT of work, but I never had a problem with it and it prevented her from dying of dehydration. She lived very comfortably until the end and with two years of hospice not once had we ever had to give her anything--no psychotropics or narcotics. She never needed it.
What I suggest you do is get your affairs in order while you can. Will, POA, estate planning, and if your name is not on his bank account, get it on there. Discuss advanced directives. And pre-planned funeral.
You really need a support group on a regular basis. Contact your local senior center and see if you can join a group, even if they meet by zoom only right now.
I joined 2 groups, they truly helped. What you are experiencing is called "ambigious loss". Study that term some, you might already know about it from nursing.
You have normal feelings.
If life gets too much, consider placing your husband in assisted living or get some outside help. I suggest companies like, Visiting Angels. I use Comfort Keepers where I live. They watch dad and I get away for the day. I scheduled with them for one day per week all summer and spent time in nature. You must self care. Venting is good, but prayer is better. Seek solice in God too. Best to you.
If your hubby has dementia, and most likely does, he thrives in a atmosphere of consistency. He also needs to activities to do during the day or he resorts to rearranging his things. You appear to need to get out of the house regularly and have new experiences. The grind of the consistent routine is burning you out.
May I suggest that you get help to come into your home to help with your husband. Ask family, friends, members of faith community, and paid help to "sit" with your husband while you get out. May I suggest that you take a girlfriend or 2 with you on these outings. It won't be the same as the "couple adventures" you were expecting at this stage of life. However, you will be able to enjoy some spontaneity and outings with people you care for.
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.
I think by the time the person dies I have done the grieving.
In your position it is very tough just now - covid exasperates everything but you need help for your sanity! The burden needs sharing. Start small and work your way towards where you will eventually need to go. You are struggling with the change as much as he is. Good luck!
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!
What helped my Dad and indeed helped us all, was getting a caregiver.
It was painful to see our Dad waste-away trying his best to take care of our Mum by himself (since non of us children live at home anymore).
Having a caregiver allows our Dad to go out more often to relax, destress and to clear his head. We try to do fun things with our Dad as often as we can to cheer him up.
Now that we have a caregiver, our Dad can now better enjoy the "few" moments when our Mom is lucid, and have normal conversations like they used to, without Dad having to worry about the next caregiving task to do.
I hope you catch my drift here. You and your daughters need to sit down and have a serious chat about getting a caregiver, so you can get some time to relax.
Hopefully your daughters don't find it to inconvinient to hang out with you a bit more.
It is a daunting task, but if the family unites in the struggle, it can be done.
PS....like I said, I have no spouse and I am rather young, so I don't know what its like to be elderly and see your spouse deteriorate. Just remember if frustrated you can always chat here.
Your post could have been written by me. My DH is 10 years older. He started showing signs of dementia about 6years ago. He was one of the smartest Criminal Investigators in Federal Service. He was an extremely artistic woodworker, carved carousel horses and rocking horses as a hobby. It breaks my heart to watch him muddle through day to day tasks. He needs help dressing, he won't eat unless I or the caregiver fixes something and puts it in front of him. He only wants to eat sweets and puts sugar in everything.
I was angry for a long time, because we saved for retirement so we could travel. Now, the money we saved goes to caregivers, and will eventually go to a MC facility.
Get a caregiver whether he likes it or not. You need some time to yourself, even if all you do is drive to a park and sit in your car. My hubby's caregiver is a Godsend. When he's in one of his ugly moods, she just ignored his attitude and goes about her business. It gives me a chance to just breathe without having to be responsible for anyone or anything.
Wishing you peace in your heart, I'm sending you a huge cyber hug!
She can barely dress herself and depends on me for everything. She has hallucinations and thinks that I am a man, a nurse, or "the other Andrea."
You should consider joining the Alzheimer's Dementia Caregiver's FB Support Group. It is a very supportive group where people VENT about anything and everything. That's where I go to vent, and they are not judgemental.
Get some help for your husband and start with a part time sitter. Tell him you need a housekeeper. Get as much help as you can because you need to go out even if its just a drive to the grocery store. Have some take out food delivered and anything else that helps you through the day. Talk with your husband's PCP about a social worker to find out what is available in your area. Medications may help with his anxiety too. Maybe you can visit your daughters if they live close by.
This is very hard and as you know anger is a normal reaction. I wish you health and peace.
I've been overseeing my mom since 2004 when my dad died. She's 95 now and lives in an ALF in their memory care unit. Both my husband and I often say to each other "I don't know how we've come this far." And all I can say to that is we just take each day and issue as they come and try not to look too far ahead because anything can happen. My mom nearly died in April from severe dehydration and COVID along with bi-lateral pneumonia and a severe UTI. She's been on hospice since May and was released from their oversight at her facility on Friday - we could never have imagined any of it.
None of us are guaranteed another day so my suggestion is to try not to put the cart before the horse when it comes to just seeing this continuing for 20 more years. The majority of the time what we think will happen never does and we waste so much precious time living with that mindset.
Try not to feel so ashamed for feeling that way - those are your feelings right now; they aren't right or wrong. We all have those moments - feeling cheated regarding one thing or another and for you especially to have been a nurse where the Alzheimer's unit was the most unfavorable jobs to be placed in and now you find yourself living it. Perfectly understandable!
I wish you nothing but the best as you try to handle your role as a caregiver-
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.
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.
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.
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.
I don’t have first hand experience with ALZ disease with a husband. My husband has cancer.
Others will be able to help you so please stick around.
I do hope that you will be able to find peace and comfort in what must seem like a never ending challenge.