‘Just Put Her in a Home,' They Say

Bill_2001

‘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.

With Love,

Bill_2001

Dio

I hear you, Bill_2001. I was where you are 6 months ago. Then sh*t hit the fan, and I had to make the tough decision. The saving grace was that I took the advice of many posters here and started researching/vetting memory care facilities early, and as one poster had said, "you should have started yesterday!" So I was prepared and chose a couple of facilities where DH was placed on a waitlist with both of them. When a bed became available, it couldn't have come at a better time.

I wish you well and hope that you're able to take care of your wife to the very end. I had hoped the same for my DH but it just didn't work out that way for us. Be flexible and be prepared is the best advice I have.

DJnAZ

As difficult as the decision to place my wife was, and still is, it was the right thing at the right time for us. She will complete her first year in memory care at the end of this month. In my opinion she is in a safe and secure environment and her care, while lacking in some areas, is far better than I could provide at home. I also realize now the physical and mental toll her dementia was having on me and I'm working on both to keep myself healthy. For me and for my wife.

Placement is clearly not the best solution for every family, but I believe there is a good chance it saved my life. Or at least added a few years that caring for her at home would have surely taken from me.

I wish you the best. Stay strong.

gampiano

Dear Bill,

Thank you for addressing the financial aspects of this situation. When I read all the posts here about placement, i wonder aloud how everyone is paying for this. I, too, am still working, but fortunately my clients come to the house. Whatever I'm earning helps to pay for a very part time care giver who gives me some respite for a few hours so that I can leave the house and not be stressed out . Unfortunately, the day care facility which is a blessing for so many, was not a good fit for my husband, and the drop off was so traumatic for me--I decided to use the money for private care.

I've been down the Medicaid route with my mom, who out lived her funds, and let me tell you, it was a nightmare, When she finally was poor enough to qualify, I was told that there was a 6 month to a year waiting list to get ANY home care for her. She was 102, on hospice during covid, so I kept her existing caregivers (private pay) and took out a $30,000 personal loan to pay for her care. When she died, all that money had been used as well.

I live in a resort area, and year round housing is scarce and expensive, so we rent out a guest apartment over our garage to a full time resident, and that also helps me maintain things around here. Hopefully I can keep things going this way for awhile.

I should add that my "life experience" with our medical system has contributed to my determination to find a way to avoid this inhumane system that we have here . It stems from my father's long drawn out battle with Parkinson's, back in the 60s and through the 70s. My parents had no assets to speak of.When dad reached the point where he needed to be in a nursing home, my mother, who was a nurse, was told that her salary was just a few thousand dollars too high for any financial help.(literally about 2000.)

At that time, the advice we were given by a social worker was: Divorce, or, "quit your job and go on welfare and the state will pay for your husband". Nothing has changed since then, its disgusting. My mom refused to do either, and we ended up in family court. I know that these experiences have made me bitter and resentful, but I feel that there has to be a better way to assist the millions of us who are caring for our loved ones with no compensation and very little assistance. I hope you are able to continue with your current plan and not burn out. All the best to you.

Denise1847

Dear Bill, I totally understand where you are. I visited a facility the other day. I just couldn't conceive of putting my DH in it. Even though it was one of the highest rated, it still felt like an institution with locked doors. I will continue to research because of the warnings/advice I have received on this forum, but it will be my very last desperate action. The word that comes to my mind is I will feel like I abandoned him. I know that makes so sense since placement is also to keep them safe and us from going insane. I think like anything, we will know when it is time. Others tell us to "put them in a home" because they are not emotionally attached, they have not gone through the emotional process and they care for us because they see what it is doing to us.

White Crane

Bill, I’m so glad you wrote you did. I’ve been struggling recently wondering if I’m doing the best thing by keeping my husband at home. Family and friends have gently suggested that they’re concerned about me.

For me, just thinking about living in this big house alone and not having him share my bed is too sad to even contemplate. Then there’s the money aspect. We’re not rich, but we’re not poor either. Even if he could qualify for Medicaid in a memory care facility, that would leave me with very little to live on.

it’s a sad situation, and a sad disease . For today, with God’s help, I will carry on and take the best care of him that I can. God bless you, Bill, and thank you for sharing.

toolbeltexpert

Bill thanks for your care for your dw and your perseverance in keeping her home. I hope you can keep her home I do believe your personal care is best as even when we place it the best thing we can do. I chose to place based on safety first, our location would have allowed my dw to walk off into a densely wooded forest with many bluff drop offs of 60 feet or more with thousands of acres of wilderness, my dw anxiety cause her to do self harm, I had to restrain her at times. So many other things including the concern of what if I got sick or worse. I looked into the Medicaid route and had signed up and was doing a spend down when they came back and changed the amount of the spend down which would have put me into poverty as well, the choices of facilities none of which had a real memory care section, they were rehab,snf. That was the straw that broke the proverbial camels back. I looked hard at selling and in the still current crazy real estate market I made my plans. It's done now and I am still needing to downsize the stuff! I cleared enough hopefully to see her cared for till the end. Having said hopefully now I am already planning my next move if it becomes necessary. One of the storage buildings I bought for my new home is a 12x24 nice building. That may be my next home I postioned it so it can be easly taken back out, I plan to minimize everything as I said so that 12x24 will be enough. I have time to prep the building layout, wire,insulate ect. The home I bought is a new home and with appreciation it could easily bring enough to finish dw care but if not by then I will be Medicaid ready. I wasn't ready to give up my choices of care. At 3659 a month which is a real bargain, they have a well trained staff, there are times when they are short staffed. But I do my best to see that she still gets my care on top of the staff. I wash her feet,trim toe nails, and recently started wiping her butt for her. I toilet her every morning, I set up her breakfast. Staff would and do these things, but I chose to go the extra mile. I haven't missed a day yet. But my choice is set, no chance of bringing her home. Home is gone. She might remember what it looked like? But it's gone for us both. Hard? Bill you have no idea, but your right about being home alone. It's worse than anything you can imagine. No new neighbors, no amount of friends visiting can help with that. My heart goes out to anyone who has placed. My heart goes out to you and all who can keep their lo home and do the best they can for their lo. None of us has it easy, none of us don't have a broken heart for everything dementia has done. So keeping a lo at home or placing is not easy. I will say this, failing to plan for either one is not a good plan, relying on someone else to make the plan will result in poor care. Complacency is the easy thing but the results always end poorly. I listened to the advice of everyone who shared their experiences and made my plans based on my reality and I am grateful for each one who was open and honest grateful for the kind words and the harsh reality of what was to come. Do I wish I could have my dw home ABSOLUTELY.

Thanks so much Bill for your well thought out post that inspires every. I believe you have a great plan and all the people who say you should place,IMHO don't have a clue and to all the people you say you did the right thing in placing have got a clue if they haven't personally gone down the big d road.

Stewart

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jfkoc

3 really good reasons.......you will know when they are outweighed

Jazzma

Thank you Bill. I don't know what else to say. I am very fortunate that I've been able to stay home and take care of my DH as things progress. I still think about when/how/where to place him if I have to. I want him here with me, always. You expressed all of the concerns so well. Wishing you the best.

Jeff86

Each of our situations is unique, and therefore we each have to craft our own solutions.

six and a half years into this journey, and I’m still working full time. I value highly the intellectual stimulation and the socialization of the post pandemic workplace. And if I’m totally honest, would find watching my DW slowly disappearing, 24/7, too agonizingly sad. So I have a private aide with my wife 9-10 hours/day. DW gets far better care 1 on 1 than she could get in MC, and her AD is too advanced for her to participate much in activities at a MC facility.

I hope I can continue to maintain home care to the end, but am a realist and know that may not be possible. One day at a time.

RickM

Bill,

All respect to you. Thanks so much for posting your feelings. It helps us all. I know how you feel and struggle with this decision daily. In fact I am in the midst of a respite/trial care period at a memory care facility for my wife. I figured I won't know how she does and how I feel unless I try it. It's been two weeks and it is all going well...as well as it can be anyway.

I talked with her when her symptoms started to progress, saying I probably won't be able to do this "until the end". She understood and agreed. So here I am trying to decide. What to do? No good answer. It's a struggle either way.

I watched my dad go down struggling to take care of his wife, no help, didn't want it. He ended up with dementia with behavioral issues and caused myself and my siblings much heartache. My DW and I vowed we'd never want to impact our son's life negatively if we could avoid it. I wouldn't want to effect her's or my son's live if I was living with dementia.

She's in a memory care community within walking distance of our house that we've lived in for 37 years. All reports from caregivers and other spouses I've talked to that have loved ones in the community are that she is doing well. I've seen nothing to cause me concern so far. Although it breaks my heart, I think her staying there is best for her and best for me. That's how we always lived...family as a whole is first.

That being said, I know how it is different for everyone. I wish you all the best and I am sorry you have to make such difficult decisions, especially since "it sucks no matter what you do".

Unbreak4ble

I’m just gonna cut and paste your post and put my name at the bottom.

It’s more articulate than I could do.

Paris20

I was one of those caregivers whose situation required that I find placement, quickly, for my husband. Diagnosed with AD in 2015, he had a paralyzing stroke in 2022 that made caring for him at home impossible. My children and I found a good facility for him only ten minutes from our home.

i had wondered, before the stroke, how I would make the fateful decision about placement. I no longer had to consider it. I had postponed knee replacement surgery in order to care for DH…to the point where I could hardly walk. I finally had the surgery this past January and I have returned to my workouts at the Y. I had given up exercise just before the pandemic. During my years at home with DH, I put on weight (stress eating). I have now taken all of it off. I stopped drinking alcohol too. So many friends and family members kept telling me to take care of myself. I have finally been able to heed their advice.

Crushed

Ive been on this road over 13 years. You just have to do the best you can. My lovely wonderful brilliant public sprited physican wife had been appointed to the highest Medical position in her field in the federal government in 2009 . 2010 She was diagnosed MCI but we all knew 2011 started on sick and annual leave. Officially EOAD in 2012 She was 60. I was her sole caretaker 24/7/365 until she went psychotic and I could not keep her safe at home. She was placed in October 2017. She barely knew me and by June of 2018 had lost all idea of who I was. We just had her 71st birthday party. She is in a wheelchair and hand fed and has no cognitive activity that anyone can find. Our 48th wedding anniversary is next week.

She is in an excellent facility and has a private caretaker. We facetime almost every day so I can check on her. I go in once a week.

I wrote this poem a few years ago :

An empty bed An empty room

An empty life Nothing but gloom

 Her body walks But she is gone

There are no talks To fill the dawn

 They comb her hair And paint her nails

Dress her in blue And shirts with sails

 My princess bride She came to be

The golden life She built with me

 She stunned the world With grit and brains

She’s in the books They know her name

 We walked with bears And Rhinos too

Dove coral reefs So deep and blue

 We raised two girls So bright and strong

I lean on them To get along

 Fifty years It seems too few

Her clothes are blue And I am too

PookieBlue

Crushed, you are very talented. I love your poem.

CStrope

I am being faced with the "facility" question this week. I am also still working full time, but know that memory care will be tough on my finances. Not something I can afford to pay for, and when they system takes all the pension, etc that DH has worked so hard for, I'll have to figure out how to pay all the bills on my salary alone. When I first started on this journey, I said to my sister, "I don't know how long I'll be able to do this". her response was "you do it until you can't". I believe I have hit that point. The guilt of feeling like it is time to place DH is overwhelming. Like others, I have gained weight, I'm now type 2 diabetic, and I've had a couple of falls and shoulder injuries causing me to now have frozen shoulder syndrome. Family and friends are worried about my declining health, and with their concern in mind keep telling me its time......Fear of the future and the unknown is overwhelming to me right now. So for now I get far too little sleep, wake up to clean up any urinary surprises he's left me overnight, keep an eye on all the cameras I have set up in and outside our house so I can continue to work, and drown my sorrows by crying to myself each night while I work on a jigsaw puzzle. Someone actually said to me that losing my house and savings is better than losing my health and ultimately my life. Maybe they're right.Save Draft

Hellogoodby

It is a disgrace that you have to face the financial dilemma you describe in one of the richest countries in the world. But it is the way it is in America. Given that, it may not matter that there are other factors not highlighted in this discussion that would be important absent the financial issue.

I made the difficult decision to place my DW in a residential facility last September. The immediate reason was that I found I could not keep her safe despite 24/7 in-home care. She managed to get in the car and turn the ignition on (fortunately couldn’t start the engine). And I could not keep her from climbing stairs despite having round the clock help.

After she moved into the residential facility I was pleased to find that her quality of life was dramatically better than it had been at home with me for years. While it is true that I would deal with incontinence faster and probably more thoroughly than the care home does, I was unable to provide her with the social interactions and intellectual stimulation she gets daily now. She is far happier now even though she only sees me a few hours a day. Yes, being alone is hard on me. But I’m not the one with the devastating illness. I can deal with it. It is a great comfort to me that she has a much better life now, even though I’m a smaller part of it.

Soul Mate

All of us here are crossing Dementia Land in our own way, each with unique circumstances, unique preferences and unique solutions.

Bill, I have wondered how you do it – have a job and tend to a wife. It probably helps that you are blessed with a day care option.  And I imagine your work life provides some socialization. Bless you for your loving devotion. And I’m sorry the journey is getting more complex.

Unfortunately, there are no adult day care facilities near me. So you are lucky in that respect.  And local homecare agencies were a disappointment.  No guarantee that a caregiver would show up, let alone be a good or consistent one.  

So the answer to lighten my load was to sell the house and move into a senior community.  Now I only have a small apartment to clean - no yardwork, no snow shoveling, no maintenance, no utilities or taxes to pay.  Our fee also includes dinner.  I don’t have to worry about pipes bursting or the furnace going out or roof leaks.  The apartment came handicapped ready, wide doorways, a walk-in shower and bathroom heater.  Should there be an emergency (for him or me), I just pull an emergency cord and help is on the way.  What’s more, whenever I get lonely, there’s always someone nearby to chat or socialize with and they understand and are sympathetic to my situation.. 

Luckily our income covered the monthly fee.  The money from the sale of the house went into savings and investments, earmarked to pay for future memory care (available in the building next to us).  Even with the close proximity, neither of us really wanted him to be in memory care and it comforts me that he passed on recently before that became a reality.  

With my husband’s demise his Social Security and monthly pension went, too – a detail somehow we had previously overlooked.  So my monthly income no longer covers all the monthly expenses.  The new plan is for me to move in with my son and his family.  I’ll be taking over my grandson’s bedroom as he goes off to college next fall.  My monthly income will be used for his college expenses.  My nest egg is being saved for down the road, if and when I might need assisted living.  

So just like the cavalry is not coming - there are no cookie cutter solutions.  But I strongly believe that you’ll be able to find a way going forward that works for you and your wife. 

Soulmate

KensWife

I feel for you , Bill, and wish you well.

I've been caring for my DH as he's declined, sometimes slowly, sometimes by sudden big steps, over the past eight years. I covered everything by myself until last summer, when it became clear that he couldn't be left at home while I worked. He wandered off and was found a mile away, he tried cooking by putting plates directly on the stove burner. So I began to bring in home-care workers, and that has helped, but only partially. He's going into memory care later this week. I was lucky to find a place nearby where a friend has had her parents living, and they're very happy with it. I've done research and have found overwhelmingly good reviews.

The other piece of luck comes from planning. My DH set us both up with long-term care policies when we married 30 years ago. His mother had early-onset Alzheimer's and he was always worried about it. It doesn't cover everything, but it takes a bite out of the cost.

I hoped it would never reach this point, but he needs more help than I'm capable of giving. After two falls in two months, I'm afraid that he'll get seriously hurt, or that I won't be able to get him up, or I'll injure myself trying. We live in a rural area, and 911 would take a long time to get here. None of this is easy, but I'd like to be able to pass pleasant times with him and not make myself ill trying to care for him, take care of all the bills and household stuff, maintain a hard-fought-for career, etc.

ronald71111

Bill, I could have written your post almost word for word with a fourth reason. Her mom and mine both were in nursing homes with this terrible disease and were like vegetables to the end. No response to you and nothing but a blank stare.

My wife is now going g on 9 years and it gets no better. I'm lucky I was retired from the start!

God bless and good luck!

Ron

Davegrant

If I wanted to join a group with similar Dementia experiences, it would be this Post. My DW was diagnosed with MCI 6 years ago and has been slowly getting worse, her memory is now about zero. I was retired so our world is getting smaller together. The worsening of her condition is slow and I can mostly see it in the rear-view mirror. Even though I identify and could honestly say what has been said, I feel it is important that I comment to get some thoughts out of my head and on to paper. DW is often uncooperative, and I have not been able to put that behavior aside. So, I will be patient and wait for DW condition to worsen which I believe will give me a clear direction. I read these posts to prepare myself for the future.

Dave

Crushed

"With my husband’s demise his Social Security and monthly pension went, too – a detail somehow we had previously overlooked. "

You are a spouse you get his SS as a survivor what goes is spousal SS

https://www.ssa.gov/pubs/EN-05-10008.pdf

— A surviving spouse who is:

◦ Age 60 or older (age 50 or older if they have a

disability

Soul Mate

Correct.

I was just saying that in our planning we focused on what resources were needed while he was alive and hadn't given it a thought to how the resources would be affected by his death.

As far as Social Security, if only one spouse worked and had SS, the surviving spouse who didn't work continues to receive that monthly amount.

However if both spouses worked, the surviving spouse does not collect 2 Social Security checks every month. That survivor only gets one check - and that check is the higher amount one. So in effect the survivor of a two-income household has reduced monthly income.

I'm not saying this is right or wrong - but the survivor of the two-income household gets penalized in a way.