‘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