‘Just Put Her in a Home,' They Say
‘Just put her in a home,' they say.
Family, friends, co-workers (I still work full time), and health care professionals all mean well, and they have my best interests in mind when they tell me that. I know this, and I am grateful for them taking the time to listen to my stories of sadness, and for lovingly making that suggestion.
My response, at least for now, is a gentle, ‘Not Today.’
I am writing this article for you, my kindred caregivers, as I presume there are many of you struggling with this very decision just about every day.
This journey began for me about seven and a half years ago, and the last three-years-plus has been the hardest. As you all know, care giving for your spouse with dementia is a never-ending treadmill of balancing chores, medical care, ‘activities of daily living’ (ADLs), and in my case, working full time. It is an exhausting, thankless cycle of numbing drudgery, with very little to look forward to. Friends and family listen to my laments regularly (bless them), and continue to suggest that placement will be the best thing I can do, both for me and my dear wife.
Today, I disagree. Something may change (or happen) that makes placement necessary, so I am keeping an open mind. For now, I continue to kick that can further down the street as long as possible.
Why do I persevere? Am I trying to be a martyr? Am I so far gone that I do not see a way out? My reasons for waiting are mostly emotional, but there are some practical reasons.
The first reason I delay placement is simply my emotions – my devotion to my wife – and the terrible thought of living out my life alone in this house. Daytime is fine – there is my job to go to, and chores to do. But the nights – the awful, lonely nights. The thought of my wife being generally ok (except for the dementia of course), but not being here with me overnight, is far worse than dealing with her incontinence and keeping her at home. I really don’t know how others get over this part of placement.
My second reason is quality of care. My wife has outlived her original diagnosis/life expectancy by over two years now. Health care professionals have told me that the quality of care that I give her, along with the daycare center while I work, is responsible for her very slow decline and general good physical health. For example, if she has an incontinence accident, how long will it take a care home to change her? When she is here at home with me, I change her diaper right then and there, and she gets a whole shower and change of clothes. Her soiled clothes go straight into the washing machine, and I sanitize the bathroom. It is unrealistic to expect that from a care home, although I am sure they do the best that they can.
My third reason is purely financial, and I am sure this is a big one for most of us here. Medicare does not cover ‘custodial care’, so dementia patients are simply left out in the cold. Each and every online article, billboard, or TV advertisement that leads one to believe there is funding available for dementia care ends up in the same dead-end loop of brick walls. I summarize here: Choose from long term care insurance, veteran’s benefits, sell the house, Medicaid, or pay for it yourself. Same old choices, no matter where you read about ‘available sources of funding.’ The way I read these choices is simple: Pay for it myself until we qualify for Medicaid. Certified Elder Law Attorneys (CELAs) can certainly help you plan, and I have done so and can recommend this plan of action. However, no one else is going to help you pay for your loved one’s care no matter what you do; a CELA will allow you to keep what you legally can, but you will be spending much of your retirement savings regardless. My math shows that I will be spending it ten times faster than I was able to save it throughout our lives together.
It is in my best financial interest to delay placement as long as possible. The longer I wait, the more I can save up funds, and (I guess) the shorter her time in a care home would be. The day that placement becomes necessary may be a sudden event: A fall, a sharp mental decline that makes my wife unmanageable at home, or even the possibility of a health event in my life. Realizing this, delaying placement seems to be the right choice, since (in theory) I will be more ready when the time comes.
I also cling to the hope that I can care for my dear wife at home until the end.
My system of keeping her home, using the day care while I work, and calling my friends and family for support is working. I am sad and exhausted, but it is working. So I will not be placing my dear wife in a care home – at least Not Today.
Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.
I salute your choice. My husband is in the early stages, so we won't face a dilemma similar to yours for quite some time. I'm saving your post to remind me it's okay to have emotions about this stuff.
I applaud your choices! Though I am not working anymore, my choice is the same. We have a routine that keeps both of us occupied, and friends take my husband to an activity once a week. Your wife is very lucky to have you. Know that you and your wife are in my thoughts and prayers.
Hi Bill. Well put and expressed. I'm a fellow journeyman with caring for my dear beloved wife of 47 years with last five years of Alzheimer's Disease. I will continue to care for her at home surrounded by paid, competent, loving day care giver and friends from our church community. My beloved will be home until she's no more or I nor my sons can no longer care for her. I will persevere with joy to make her life worth living. I'll keep you in mind when I pray and will pray for you as well.
A courageous and loving choice. My mother died of AZ at home having been cared for by my father with family, friends and hired support. He has since passed away himself. My wife is now in the early stages of AZ and my intention is to care for her at home for as long as I'm physically and financially able. My father is my role model. The question I'm asking when confronted with any caregiving challenge is "What would dad do?"
My husband has had mixed dementia (vascular /Alzheimer’s) for 10 years. Both of his parents also had dementia. He always said that he didn’t want to live like that whenever we visited his mom who was bedridden and in a nursing home. For that reason I am really hoping that I can keep him home until the end. He’s said many times that he loves it here. -we live in the country on 20 acres in a house that we built ourselves. I am part of a Skype support group of 8 people from across the country, Canada and England. I am the last one left with a surviving spouse. Everyone else was able to keep their loved one at home til they passed. I am now under 5 feet and don’t know if I’ll be able to do it physically, but I will try. Financially too, it would be so difficult to put him in a home.
Good for you! You are doing everything you can for her. But, it’s also important for time for you. Because if you get sick she will not have you to rely on for her care. I understand your situation completely.Do what is going to be right for you in your heart. 🙏 I pray Jane
@bill2001 You write and express yourself so beautifully. I know you’re having a difficult time, but you love for your wife just shines through. Thank you for all you’re doing for her!
I read your notes, and it brings back memories of when I cared for my mother and my husband. I am now 92 and have a wonderful son who has moved in with me. Fortunately, I am still quite able of taking care of myself and feel I have been blessed. I noticed you mentioned you have not been able to get any financial assistance and I wondered if
1. I believe Medicare has a two week Respite Care Assistance Program for Care Givers. You might want to check this out.
2. The Veterans have a Veteran's Widow's Pension for women who have a limited income.
3. There is also Veteran Assistance for home care, and Assisted Living Care. My brother and his wife received this for about 2 years. I believe you are allowed to have your home, car, and $18,000.00. Please check with the DAV. They may have some anwers for you.
I know you mentioned you have an attorney, perhaps he can get this information faster for you. God Bless you for being the wonderful husband you are, and may God take you both in his Gental Arms.
Thank you for expressing your point of view so eloquently. I would love to share it with my husband’s adult children, who really want their dad in a facility so they don’t have to worry about him.
Thanks for this as I sit here at 3 am
Up all night listening to my mom hallucinate and call out to people loudly and I am angry at my dad for not placing my mom in a home He refuses I work full time and my mom requires full time care and I am it. My dad doesn’t help feed her. He has to help change her as it takes 2 of us. But I still sit here exhausted angry and feeling overwhelmed. At what point is it beyond my capability or should it be beyond me doing it all? Would my mom have wanted me to go night after night without sleep so she can be in a buiding ( she has no idea where she is).? Why do people keep their family member home? Is it more for them or the dementia patient? Wouldn’t care be better with full time care givers? So many questions.