I don't know how all of you do this for years. Any advice?

Dear Mary,
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

You have nothing to feel ashamed about, unless being human is a reason for shame.

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 just posted a question before seeing your post. I am in the same situation. My husband is four years older than I am and I share the feelings you revealed. My husband, 77, was a professor at a prestigious university. He also was very mechanical. He could fix anything. Now he acts like a child...dependent, moody, clumsy, incapable. He is oblivious to his condition.

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.

When you bring people in to help YOU (AND him), don't introduce them as caregivers, introduce them as friends who came to visit. Once they're there, don't plan on going out the first 4 or 5 days, just let them help you around the house, also sit down, have a cup of tea or coffee, a visit, a gentle chat, so that your LO can get used to their presence with only occasional interface.

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.

Sounds like you are overwhelmed for sure. And you're not alone. Caregiving for someone with any kind of mental decline can be exhausting, to say the least. If you are to continue to care for him in your home, then you must bring in some outside help, so you can get some time away, to do some fun things you enjoy and help your mind get renewed and refreshed. Without doing that, you won't survive the journey. You must take time for yourself on a regular basis. You'd be surprised how doing that will increase your patience, and compassion.

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.

welcome to the worst job in the world. I have been dealing this for a few years myself. My husband also 84. I am 79. These past few years are not living. Constant stress. My husband cant even dress himself, he's eating almost non existent. and if he eats and drinks at the same time all food goes in glass. He was brilliant as well. On hospice now, but they said as long as he can walk a little everyday, he will be around as all other vitals are normal. He as an ostomy as well. I have to change urianary bag each week, now he rips it off sometimes. My kids com e for a few hours a week. Hospice nurse once a week. Trying to get someone to dress and bath him. It just isnt a life, but we are stuck with it. I try and find some joy each day. Can't leave house for long because he needs to to watched closely. My son watched him one day I came home from groceries and my husband pulled his urine bag off and was playing with it and urine all over couch. My son left him for a few minutes to get a sandwich. So the responsibility falls on my shoulders. Pay the bills, clean the house, take care of him. No free time even for a walk. Once I get more help I can relax a little because like you, I know this could go on for quite awhile. Its a sad ending. But we had a good life so no complaints. I went to a support group, but so depressing. It was of no help to me. But many say it helps them. I suggest get some help, social services can help on a sliding scale to get help for a few hours a day. I am trying that now. Try and get some support from friends, even just talking on phone or a quick cup of coffee. Ofcourse, people will walk away, expect that. They cant handle what is going on. They don't want a reminder of what could happen to them. Some friends will stick with you. You do need time for yourself. I get up early in morning so I have coffee in peace, pay bills online and just have quiet time. My husband doesn't sleep thru night even with sleeping pills, so alarm goes off 2 to 3 times at night. Sleep is a luxury for me. I nap when he naps. He is on drugs to calm him, that helps. Hospice provides them. I can only say there are many of us out there who feel alone. But there is always somebody who will be there for you. My friends who dont live nerby send me my favorite starbucks coffee pods, or cakes, just to cheer me up. My husband is quite content with his life, so that is good. He used to disbarr lawyers and every now and then he remarks about his old job and how the lawyers in our town were so afraid of him. So you see smart people get this disease there is no boundary. Stay focused and what you an. Do not eat yourself up if you aren't perfect, none of us are. We get frustrated at times as well. Our husbands are no longer our husbands, they are a loved one we take care of, we are caregivers now. I feel for you and I hope I helped a little.

For both of your sake please see a certified elder law attorney (www.nelf.org) and get the financial end of facility placement in place.

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.

Don't feel ashamed about how you feel. You have no reason to be ashamed and you'll find no judgements here. You need to bring in some outside help whether your husband wants it or not. Your whole life can't just be watching him and doing everything for him. You need to be able to have a life apart from caregiving. To go out and enjoy some socialization and interests without your husband. Please look into getting some homecare. It will help you both.

Hello. We have so many things in common. My husband was very intelligent also and I loved that about him. When he began to decline mentally, I too thought that he was acting sometimes. I got angry a lot too and I have whipped myself mentally for it. He died a few days ago, much quicker than I thought he would and I miss him so much. He had to be changed and it had gotten to where I fed him every meal and did everything for him and sometimes I didn't know how long I could continue. And during this time of Covid, I found out that some programs I would have qualified for were not available anymore. I began to pray about it because I felt sometimes like I couldn't just keep doing everything everyday. I asked God to help me and some things began to happen that were a help, even within my own family. It was still rough though. But now I regret that I didn't savor every minute with him because he's gone and it's too late and I can't go back. I'm sorry you're going through this too.

I’m sorry you are going through this. It really is the hardest thing in the world. I think you should really consider putting him in a facility. My mom tried to care for my dad once he developed Alzheimer’s, but it just got to be too much. The endless washing of poop stained clothes, the constant trying to get him to change his undergarments and his refusing, the constantly needing to check on him to make sure he hadn’t done something crazy like mowing the yard while driving around with the riding mower in circles, or better yet, walking naked outside and the anger, belittling, and name-calling just was too much.

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.