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‘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.
With Love,
Bill2001
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Almost ever senior in a facility says the same thing, " I want to go home." It is only because they are agitated and want things to be the way they used to be. You mentioned that as well. He is safe which is primary and well cared for. You both are doing the best possible thing.
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1 ReactionUnfortunately, you are being abused by your dad. I would recommend seeing a psychologist or psychiatrist and working out why you are not standing up for yourself. Not sleeping is not acceptable.
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1 Reaction@buggirl55 Care isn’t better in any nursing home. They don’t have the staffing to accommodate all the patients. The ones that cannot verbally advocate for themselves seem to be getting the least care. The squeaky wheel gets the grease sorta thing. My mom was in one for 6 months until she passed. I couldn’t keep her at home because she weighed too much for me to handle. She was 300 pounds. She weighed 175 pounds 6months later when she passed. She could push the nurse light and it might be an hour before they get to you. If your request was bathroom related that is devastating. At home you can get changed right away. Because of care delays they may get UTI Or fungal infections. When they do come they are very quick about business beauties people are waiting. Your food will always be cold. They bring trays for everyone at the same time. It takes an hour or more to pass them out. Same with medicine. It won’t be on time and something at all. My mom was given an IV bag with anthers name on it. She was wearing 2 fentanyl patches at the same time. The failed to remove the first one. My step father and I ended up staying 24/7 at the nursing home. He stayed in the day while I worked. I stayed all night. She was well taken care of after that. The squeaky wheel gets the grease and I was very very squeaky. I took notes and called meetings with the head nurse regularly. One time I stood at the nurses desk looking at her and refused to leave until she brought my mom her medication. Mom had a 102 fever. I told her I had no other place to be than making sure mom got taken care of. And yes she went and did it right away. Another time they didn’t bring mom a food tray. They said she barely eats 2 bites anymore. I insisted get meals like everyone else weather she ate 2 bites or a whole plate. So no she won’t get better care at a nursing home. If you can afford private pay $10k a month you can put her in a group home where she might get great care. Usually only 4 to 6 people in the group home environment.
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5 ReactionsHello,
You are an amazing Caregiver. I agree that placing your loved one in a LTC is not the same as how many of us care for them. I cannot imagine placing my spouse in a Nursing Home. He can be difficult..but he can be amazing in the next moment. I don't know how to be without him. He has been there for me and our family. He makes me laugh and sometimes cry. He used to be so strong and could lift me up if I was about to fall. He cannot do that because this awful illness has taken so much. Kudos to you for your devotion and love you show her. She is lucky to have you! 🫂
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5 Reactions@pebbles2661 - Have you considered engaging an ombudsman from your county - if they have them? My husband (who has Alzheimer's) is actually also a county ombudsman that monitors long-term care facilities. They are mandatory reporters, so every report should be investigated and if the facility is licensed, they are governed by the licensing standards of the state/local laws.
When his cousin was put in a facility, we visited once and she needed to have her diaper changed for over an hour. He was livid. This wasn't in our county, but he went to the care, put on his Ombudsman badge - let me tell you, they whipped into shape. He didn't need to say a word. Cousin Maudie didn't experience another overdue diaper change after that, or any other care for that matter.
I plan on volunteering as an ombudsman in my retirement, but might do it sooner if my husband ends up in a facility before that time - if only for the extra attention he'll get.
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1 ReactionAgree completely Bill. My goal is to keep her home as long as possible. I don't like to admit it's just financial. But that is a big part of it. I know I am giving better care than a memory care facility. It's hard though. Today was shower day and she was combative and ornery. She called me a bastard last night trying to give her her evening levadopa pill. So I called her a bitch and we moved on. I adapt as much as I can. She fell and broke an elbow so that means extra care and trips to the doctor. I don't know how you work full time and do this. I have bookkeeping and some outside activities to keep me sane but that's partime. Her sister and husband together are in assisted living and they hate it. Burning through money like crazy. He was the caregiver and now his health is the worst. It's clear to me that our health as caregivers has never been more important and every slip or belly ache makes me think about it. I am a big strong guy and she weighs 110# so I can manhandle her for a long time. I don't know the point of going to a home. She still recognizes me and we kiss. She still has consciousness and feelings. Until those are gone I will keep it up. I hope you do too.
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10 ReactionsYour story is also my story, exactly. I am so miserable, I wake up every day wondering how I will survive the day. I feel I have no options. If I put my husband in a home, I am just trading one hell for another, snd spending a ton of money. My kids are not very supportive and don’t offer much but criticism. My husband was the love of my life and we had a wonderful life together. I am so thankful for that. But now he is aggressive, angry, uncooperative and abusive. I am finding it hard to remember the man he use to be. He has not been able to take any of the drugs, he tried about 6, for agitation. They magnified the agitation to the point I thought I was going to have to Baker Act him. Now he is taking medical marijuana, which has not solved the problem but taken the edge off. Last night I got almost no sleep because I was up cleaning up urine off the floor and and my loveseat. That’s the second time he’s gone on my furniture. He wears a diaper, but will not go in it.
He’s suppose to be in the final stages of vascular dementia, but he is very healthy, so I do not know. I spend all day cleaning up behind him, he is in constant delusion and constantly looking for his wife. I told him the other day I was his wife and he laughed and said “I don’t think so.” I cry a lot. This is not how I expected my life to go.
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5 ReactionsPutting someone in a care center has become a option for the wealthy or someone on Medicaid. If you are middle class you loose everything you have worked for.
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3 Reactions@msbjean53 My husband & I were going through the same thing you and your husband are. It was terrifying.
His aggression and agitation were out of control especially afternoons and nights. He also didn’t know who I was and wanted me to leave. We would look at photos, and he would tell me, “That’s Trisha, but YOU ARE NOT TRISHA”!
His doctors were trying to help with different medications, but it just wasn’t enough and there were so many side effects that he was unable to verbalize how he was feeling. Sometimes, it made an awful situation worse.
Medical marijuana is legal in our state and early one Sunday morning I went to a dispensary. They were so helpful with what they gave me and how much to start giving him. I have slowly increased the original amount a little at a time and now feel I have the proper dose. I either dissolve the calming gummy in his coffee or cut up the gummy into small pieces and give it to him in a small bowl of mixed nuts (I call it trail mix) in the early afternoon. He often refuses to take pills or spits them out after holding them in his mouth for a short time.
It doesn’t make him high, and it doesn’t seem to have any side effects, it just takes the edge off, and he is calmer and happier.
It’s far from perfect; there are still lots of ups and downs and awful times, but it helps more than anything else has. He was diagnosed in 2012, so we’ve been dealing with this horrible disease for a long time.
I also will add I have the blessings and interest of his doctors at Mayo Clinic.
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5 ReactionsWhat a lovely article! You must be a writer.
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