My daughter is currently living with us which is a great help, but she might leave at the end of the summer to pursue her own interests. I am not sure how to be his wife and caretaker at the same time. I find my patience is thin with the constant repeated questions and need to direct him concerning daily living skills. He does not do well in an institution. We saw that after a rehab situation. I want to keep him home, know that extra care is needed but find that to be hard to find. I have loved and honored him for almost 40 years of marriage and know that an institution will kill him. How do I take care of myself and honor my vow to him to keep him home. My own health is less than stellar. He is 12 years older than me and 83yo. His situation was exasperated by throat cancer and the chemo and radiation he received. He is free of cancer now. He also had kidney cancer 15 years ago and with the one kidney removed he was cured of that. He and I have been through a lot, and I will not abandon him now. He was looked up to by his colleagues in ministry for his clear and convincing statements on justice and mercy. I am tired and concerned and guilty about my own impatience. I, too, am retired clergy.
Many of us have encountered your situation, and at some point or another have come face to face with the realization that the considerations of safety and peace and care by trained 24/7 caregivers are more essential than our own preconceived beliefs that residential care “kills” and home care some how secures the benefit of the client without ultimately causing the increasing insidious decline of the welfare of the caregiver.
In your situation, you are attempting to impose upon yourself all sorts of obligations to be something that you are becoming less and less able to achieve.
A wife marries to “love, honor, and obey”. None of these promises include 24/7 physical care of a disabled, dearly loved human being, larger than yourself, who no longer can participate actively in his/her own care or comprehend the circumstances of life and rationally find solutions for them.
For you- I’ve known many MANY people who were totally and passionately devoted to the people whom they loved, were ABSOLUTELY CERTAIN that life in residential care would “break their heart”, “kill them” “hasten death”…..you have thought these thoughts, as I did, and believed them as I believed them.
Yet after taking my cherished mother to the residence that became “home”, when a fall in HER HOME (for almost 50 years) caused her to become my full time 24/7/365 care, she instead became a dearly loved member of a comfortable and pleasant society where her physical needs were met, she was able to reveal to her caregivers her once quirky and cheerful personality, and truly LIVED again for 5 1/2 years, with daily visits from family and amused and loving attention from caregivers.
I “abandoned” my mother, with tears streaming down my cheeks, after attempting to “move Heaven and Earth” to keep her at home in my care, only to find that the residential care center that I found for her was able to do far more than I, and do it better.
you must do your best on his behalf, but NOT by sacrificing your own welfare. A loving marriage doesn’t expect or require that.
Your decision making ongoing will become more complicated and much, MUCH MORE DIFFICULT. Just consider, that both he AND YOU have to responsibilities to each other AND TO yourselves. He must now depend on you to make his care decisions based on your Faith and love for him, and for YOU to safely move forward.
I pray daily for “….all whom I love, AND ALL WHO SUFFER”. In your prayer life, be open to accepting the hard solutions as having more value than you may have previously considered.
Hoping that you are blessed with consolation and peace, in whatever you decide.
Why the vow to keep him home? That has nothing to do with your marriage vows, you can take care of him by placing him in a home, with trained caregivers. That is not abandoning him.
As his dementia gets worse he will continue to change, my step-mother no longer knows that she is in MC. She is safe, well fed and cared for, doing just fine.
I agree with Ann Reid just posted:
"You must do your best on his behalf, but NOT by sacrificing your own welfare. A loving marriage doesn’t expect or require that."
Thank you for your input, but maybe a vow is something you have not experienced before. For us, they are sacred.
My late husband too was 12 years older than I, and when he developed vascular dementia years after having a massive stroke, I too wanted to be able to care for him at home. Not so much because of what he wanted, but because of his very limited speech since his stroke, I knew that he would struggle trying to let others know exactly what he was needing if he were to be placed somewhere, and might suffer because of that.
I am grateful that I was able to keep him at home until his death in 2020.
Was it easy? No, but once he became bedridden, I hired an aide to come put him on the bedside commode so he could poop, and by then he was also under hospice care so their aides came twice a week to bathe him and a nurse once a week to check on him.
While I respect your wishes to keep him at home, I hope and pray that you will also know and honor your own limitations. We're all only human and we all have our breaking points.
What saved me(literally)was my local caregiver support group that I attended once a week. There is something so very powerful about being able to share with others what you're going through and who understand because they're going through similar things. So please find one in your area.
Also make sure that you're taking time to do things that you enjoy, as that will keep you energized and give you more patience for the journey. It can be something as simple as taking a walk around your neighborhood, going to lunch or supper with friends or even going to church.
Also educate yourself as much as possible about the disease of dementia. as that too will better help you understand what your husband is going through. I always recommend the book The 36 Hour Day to start, along with the many helpful videos on YouTube by Teepa Snow, a world renowned dementia expert.
And then of course again know your own limitations. There may come a day when you'll have to do what is not only best for him, but for you as well. And that may very well mean placing him.
40% of people caring for someone with dementia will die before the one they're caring for from the stress of it, so PLEASE, PLEASE, take good care of yourself, so you can enjoy this last journey with your husband best you can.
May God bless you and keep you.
I want to add my voice to the others:
You don't know that an institution will kill him. We don't know what will eventually cause our deaths. You and husband are clergy, so why aren't you on the page that "only God knows what will take him," or "it's in God's hands now?" I've been counseled in those words by many fine clergy persons.
Have you forgotten this? John 14:27 "I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid." What good is your faith if you aren't availing yourself of its comfort now?
You would rather keep husband home because you won't "abandon" him. How is it abandoning to get him to a place where professionals care for him? You're the best caregiver you know how to be, but what if you miss a sign that a professional would know immediately and be able to alleviate his suffering? It isn't okay to provide him with insufficient care. It isn't okay to make assumptions based on what YOU want to happen rather than God.
You could be with him every minute if you choose the right care facility. How can you make decisions that need to be made now if you're exhausted and can't think straight? Your health conditions would improve, perhaps, if you weren't under the stress caused by caregiving (that you do not have to do other than your own stubborn beliefs).
You saw that husband didn't do well in a rehab situation. That was then, this is now. Here's one of my favorite philosophical quotes: “No man ever steps in the same river twice, for it's not the same river and he's not the same man." This is from the ancient Greeks, before Socrates, and has inspired people throughout the ages to reflect on how things change and how we change along with them. And how we MUST change or make (frequently terrible) mistakes.
Please choose a clergy person that you trust to counsel you about the guilt that is causing you to throw yourself under the bus of your husband's long-term illness. Trust in the God who shows us the way when we really need to see it, and thank him for the time with your dear husband.
I'm sorry if I've come down hard on you, but I am caring for my husband too. I understand the decisions we have to make, and I know how difficult it is. From my perspective, you're going down the wrong road. Could you possibly believe that God has guided you here? And that those of us who responded are his messengers sent to wake you up to a better way of thinking? Just a thought.
Your choice is to keep on doing what's not working or place dh in a memory care facility where you can both enjoy a better quality of life. You can't have it both ways. Dementia is a lose-lose situation for all concerned, so you take the least ugly alternative. My mother lived to 95 in memory care AL with "her girls" taking beautiful care of her and w me bringing her whatever she needed. I had a life, she had a life, and we managed to preserve a relationship in spite of it all and BECAUSE of living separately.
Best of luck to you.
Caring for your husband has taken a toll on you and you don’t have to apologize for that. I sense that you have a very strong sense of obligation to him.
Do you think that you would feel guilty if you weren’t caring for him yourself? So many people feel like they must be the ones who do everything themselves. When you start feeling overwhelmed you need to start thinking about alternative solutions.
I am glad that you have had help from your daughter but she will be leaving to move on in her life. You’re stressed out even with help from your daughter. Just think about how much harder it will be when you are caring for him all by yourself. It’s not easy now and it’s only going to get worse.
Please consider looking at a few facilities in your area. I think that you would feel better knowing that you have selected the right place for him to live out the rest of his life. You are not abandoning him by placing him in a facility.
He will adjust to being there. You will also. You will be able to visit him as his wife instead of his caregiver. You will be a wonderful advocate for him and he will know that you are overseeing his care.
Wishing you peace as you continue on in your caregiving journey.
Thank you!
Just ordered it. Thank you. Now for the concentration and time to read it.
My heart goes out to you even as I have tears in my eyes. We are past the cancer, thankfully, though doctors' appointments continue to monitor. We're beyond "going out" for anything other than doctors' appointments, even for ice cream. I need to make more use of the many offers to visit so I can go to the post office, bank or grocery store for a few items.
As for feeling guilty, I think you might end up not feeling guilty if you are able to get him to a place that is going to provide him with the best care possible in the safest way possible.
But then comes the kicker -- you feel guilty for not feeling guilty! When dh was in the hospital a few years ago, it was such a relief to come home and know I'd be able to sleep through the night. And then I felt guilty for feeling that way!
And maybe, as many have said on this forum, replace the word "guilt" with "grief." Because if you are able to place your dh somewhere, you will begin a grieving process, and that is okay. Acknowledge the grief because it is part of having loved and been loved.
I tell you this story only to prepare you for what lies ahead. Just make decisions one day at a time, and you'll know when it is the right time to place him where he can be safe.
God be with you!
My husband has advanced dementia. He’s bedridden, cannot talk anymore, and depends on others to clean and feed him. Similar to you, I care for my husband at home because I KNOW he receives better care at home and for less. I have been caring for him for 10 yrs and he has ZERO bedsores so far. In MC or NH, he would be covered with bedsores which can appear after a few weeks. They are painful! Why so fast? Pure logic: MC and NH have one caregiver for 10-13 residents. There is no way your husband will receive 1-on-1 care. So, if he pees and poops in his pants or diaper, he’ll have to wait until someone comes along to clean him up. Prolonged exposure to wetness and waste will speed up sores appearance. There are other examples too, but those are two biggies.
And then there is the issue of money. I disagree with anyone who thinks MC and NH are better financially. Those facilities are businesses - they are there to make money. The cost of staying there is already high and then if your husband needs additional care, you have to pay for private caregivers to be with him. That is more out of pocket money. When facilities know that your husband has a private caregiver, they will cut back on THEIR responsibilities and expect your caregiver to do the work, leading to their burnout and resignation. You’d be back to square one. More headache and stress for you.
Last but not least, it is much easier to leave your parents, siblings, or relatives in a home. It is VERY difficult emotionally to do that to a spouse.
My advice: hire a live-in caregiver. Cheaper, 1-on-1, and you have control over his care.
I have been down this road before and swear I will never put my husband through that again.
Just my humble opinion …
i truly dont think i can manage that too. Please dont make anyone feel guilty for placing a loved one in MC or Nursing home. I dread it
I do know what it is like to watch someone transition from a vibrant active person to someone who needs help and is drifting further from the person I knew all my life. I cope by trying to take the days one at a time without any expectations of my mothers ability. I think of the future only as much as I need to prepare for her care as she progresses. I also accept that the past is gone and she’ll never be the same. When she talks about the past her memories are not always accurate but I don’t correct her anymore and I let her enjoy her memories as they are. Often her memories are actually of things I’ve done but she wished she could have done. At least now she apparently thinks that she did get a chance to do them so I don’t correct her.
This forum also helps me handle the stress since I know that I am not going alone through this, and often how lucky I am that my mother doesn’t have the advanced problems many do, though that day may come. Many people do need the in person support that is available through support groups and/or by turning to their faith and that community.
Accept offers of help and hire people to reduce your load, even if it does ultimately mean placement in a facility. I see each stage of hiring more help for my mother as an opportunity to get back to having more quality time with her and not get bogged down in keeping up with her care. I also don’t worry as much when I do go home since I know she has people at least checking on her daily. (I live two hours away so I can’t visit daily.) I can also take better care of myself so I can be there when she needs me. I hope that when it comes time to place her in a facility that I will be able to spend most of my time with her being able to appreciate having the time with her rather than cleaning constantly or whatever and not being able to simply be with her. I suspect I will just end up watching tv with her or something but I will be there for her to share her comments or ask questions about what is going on.
Basically I try to take one day at a time and accept that she will continue to evolve into someone different than the woman I remember, but also appreciate the person that she is now.
God bless you as you work through this greatest challenge of your life.
(copy and paste)
https://www.aarp.org/caregiving/basics/info-2017/continuing-care-retirement-communities.html
Not everyone loves their spouse.
My husband is far healthier than I am. It's expected he will live to 100. Sadly he and I can't stand each other. But, off my dysfunctional marriage. I have read all the various comments. You have to decide in your heart what you feel is best. I can only think of my parents care. Both stayed home, my father had Alzheimers and mother hired help around the clock to care for my father. He died at home. Mother was lucky as she lived till 97. And her mind stayed good. We the children hired help when Mother became too frail to care for herself
The last 2 months of her life hospice came to her home and provided care. I must admit now I wish I had spoken out about the morphine that was given . I know it caused Mother to die sooner. Mother refused to go to an assisted living facility ( before she became down).
Since you are a person of faith. Seek God for comfort. Peace
Not everyone loves their spouse.
My husband is far healthier than I am. It's expected he will live to 100. Sadly he and I can't stand each other. But, off my dysfunctional marriage. I have read all the various comments. You have to decide in your heart what you feel is best. I can only think of my parents care. Both stayed home, my father had Alzheimers and mother hired help around the clock to care for my father. He died at home. Mother was lucky as she lived till 97. And her mind stayed good. We the children hired help when Mother became too frail to care for herself
The last 2 months of her life hospice came to her home and provided care. I must admit now I wish I had spoken out about the morphine that was given . I know it caused Mother to die sooner. Mother refused to go to an assisted living facility ( before she became down).
Since you are a person of faith. Seek God for comfort. Peace
has a brain that is failing him.
I hope this helps a little.
Jaypy
I too have always wrestled with that decision when my husband went to
care. But you have to be realistic and you have to make right decisions for both of you now.
It’s a smart decision to get your husband the level of care he needs.
it will protect both your health and safety and his. He will have eyes on him 24/7 with professionals… a doctor … neurologist … occupational
therapist … activities… someone else to do the grunt work … and you can visit every day … bring him snacks presents … take him outings …
and be loving wife he sees everyday.
there’s no way you can replicate that
at home no matter how many hours of help you have. The house will no longer be safe for him… and he’ll feel isolated with an exhausted wife and caregiver..
there are no perfect answers but in my opinion the best we can do is turn them over to a whole team of experts in safe environment.
I found nice small private care home
closeby … visited everyday… and my husband always happy see me and this allowed us to continue beautiful husband/wife relationship.
you didn’t make vow to keep him at home … your vow was to do best for him (and you)
You’re still his best advocate and you’re still taking care of him.
best of luck
So let's walk into his home, a beautiful South Florida villa. He'd been seriously ill for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.
His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either.
The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all the room that we needed between trash pickups). Always laundry to be done.
Dad crying that he wanted to die. Hospice doctors, nurses, a minister, OTs, PTs and visitors in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.
This is what dying at home looks like.
Rehab is far different than memory care. Memory care focuses on stimulating the mind, so there are lots of things to do to keep that stimulation going.
My mother's MC had retired doctors and dentists and even one man who was a neuroscientist. He and I talked about things I could never hope to understand, but he also had dementia. So did the other people living there who were still smart and interesting.
I feel like you think the man he was is too good for an "institution." (Calling it that certainly doesn't help get past your own personal prejudices about one.) I beg to differ.
The bottom line is that I'd hope you would honor your marriage vows which I take to mean ensuring he's cared for the best possible way. You doing it may not be the best way, so try to be a little more open-minded about care possibilities and also work on getting your head around the man he is rather than the man he was.
This is life, and we change every single day. I'll bet he doesn't have as much hair as he once did and maybe yours has turned gray, but I would hope neither of you spent time mourning what the other once was and resenting what age had done to each other.
Pull up your bootstraps, recognize that long lives bring change, and learn to adapt, or this part of your journey together will finish you off long before it does him.
I didn't understand until recently how being a caretaker takes such a toll on one and makes it difficult to be the spouse. Until one lives it, it is hard to understand.
Finding a place will take time if I hope to find one which is within visiting distance. Cost for a decent place will also be a serious factor here in NY.
I know I have to begin to look as there will probably be a waiting list, so please keep me in your thoughts and prayers for strength to do this.
Lucky for him he didnt really start ALZ until age 91, so he got it late, and it went fast, two years. Hard at the time but in retrospect probably best. I wanted to keep him at his home with my mom, I would agree to live there too but my mom vetoed it, and she was probably right . But broke me up to bring him out of his home of over sixty years to some institution
But its hard to watch, I dont know if there is any advice to make it easy.