CARE AT HOME UNSUSTAINABLE

airwolf172

My DW’s psychiatrist and non-residential memory care activities director have recommended residency, telling me that my caring for her at home is “unsustainable” and that I’m harming myself by trying to be her sole caregiver. What form could/will that “harm” take? What could happen to me? I’m stressed, sure, but feel that I’m coping. Am I missing something?

H1235

Caregivers sometimes don’t take the time to see their doctor for regular checkups because they are too busy. This can obviously lead to major health issues. A person with dementia can become violent. A pwd may not sleep well at night or may wet the bed. A caregiver loses much needed sleep changing sheets, helping with toileting or just steering them back to bed. Don’t underestimate the problems stress can cause. High blood pressure being a big one. Could you physically get her out of the house if there were a fire? Caring for a pwd is a full time job plus some. It stinks, but as we get older we tire more easily and everything starts to ache. Could it be they are trying to find a nice way of saying she needs more care than you are able to provide? Keep in mind, things will only get more difficult. Even if you are confident she should remain home things may change quickly as dementia progresses. A simple fall ( either her or you) and everything could change instantly. Some facilities have a waiting list to get in. It’s always good to have a plan B. I would at least find a facility you like and get her on a waiting list.

Carl46

Airwolf, unrelenting stress suppresses the immune system, which makes the individual more prone to infectious disease and cancer. Stress raises blood pressure, which can cause everything from stroke to kidney failure. A 24/7 caregiver is chronically stressed by never getting a break and never getting enough sleep. It is a little like being in combat, without the fear of violent death. The constant vigilance alone is enough to damage the health. Further, the sleep deprivation hampers the caregiver's ability to make sound judgments, leading to errors.

I get that you are coping. So was I, I thought. I was so accustomed to the gradually increasing pressures of caregiving that I didn't realize how much I was suffering until it was over and I began to recover.

There came a time when my doctor and my wife's doctor were both telling me "It's time." I found an adult day care for half day respite, five days a week, and started visiting memory care facilities. Then I placed her in the one that looked best to me and that a hospice social worker (who visits them all) said she would choose for a member of her family. I didn't like doing it, but it was the right thing to do for her and for me.

Vitruvius

I told my story here years ago, but since you asked what harm could result I’ll relate it again.

Due to the stress of caregiving I developed an extremely rare Autoimmune condition, the most virulent version of a blistering skin disease. Without treatment 80% of sufferers die within the first year. I have had infusion therapy for this condition which should significantly improve my odds, but I will be left with lifelong vigilance to survive.

I almost certainly had a genetic disposition for this, but in a normal life, doctors agree it would have remained dormant. (Researching my condition has also given me an honorary medical degree via google).

When I placed my wife I hadn’t yet developed my condition. I placed her after she needed a hospital stay and my family urged me to do so. Just weeks after I placed my DW, as I no longer was on whatever adrenaline kept me going on my caregiving duties, I ended up in the emergency room with my skin coming off.

My DW was better off in her MCF, she was well cared for. I was able to stabilized my condition and visit often, covered head to toe, as this condition is not contagious.

My condition is incredibly rare, literally less than a single digit per million so this isn't going to happen to you, but something else might. I urge you to at least plan for placement, as hard as it may be, financially and emotionally. It's pretty hard to know when your stress levels have gotten to be harmful but err on the side of caution. I felt that the mechanics of DW's care were bearable, and I thought of her as relatively easy as she had few bouts of difficult behaviors. Nonetheless I feel it was dealing with the 24/7 delusions, agitation and confusion that took its toll. We had the resources for DW's placement but I didn't do it earlier out of a sense of love, obligation, partnership or whatever and now I pay the price and she was no better or worse off than if I had placed her earlier.

Timmyd

Do you think these people have sufficient visibility to your day to day situation to be making the judgement for placement? DW's PCP was recommending I look into placement over a year ago. I was pretty startled by that and took it rather seriously. Over a year later I feel like we are doing fine living at home. I wonder if medical professionals tend to be over cautious about recommending placement. No one can go wrong by recommending placement. I doubt any medical professional will ever recommend not placing someone who is clearly suffering the ravages of this disease.

harshedbuzz

@airwolf172

At the end of the day, this is your call to make.

That said, 2 professionals who are both very familiar with the realities of dementia care expressing the same concern would make me try to understand the "why?". While they could be projecting their own experiences or feelings, they may be seeing something you're too close to see.

Are you able to provide care around hygiene and medication compliance? FWIW, dad got much better care in the MCF than he did from mom. This was no fault of hers; he responded to her attempts to help him with a "you're not the boss of me" tantrum normally seen in threenagers. When the aides in the MCF gave meds, offered food or help with showers/dressing he cooperated with them as he saw them as medical professionals helping him. Another bonus was that she could stand down as hands-on caregiver and go back to being a doting wife.

Prior to dad's placement, mom had a paid aide 3 times weekly and I was available as needed and yet she still wasn't as proactive about her own health. I think this was down to her depression (treated with meds, a psych and talk therapy) leading to a sense of hopelessness. She had a medical crisis because she hadn't taken care of herself. She survived that, but in getting her BP under control, one of her optic nerves was damaged resulting in the loss of vision and her ability to drive (aka her independence, and mine)

HB

airwolf172

Thank you to respondents for your comments and insight. They’re most helpful.

easy23

The doctors at the ER tried to talk me into placing my DH into MC on several occasions. Each time I brought him home and carried on because I could. Eventually his psychiatrist said it was time and I knew it was too. That's when I made the move.

blacksparky

I’ve read and heard that we as caregivers will know when it is time for our LO’s to be placed. When I can’t give my DW the level of care that she would get from a facility, this is when I will place her. I have a plan B for when that time comes.

tboard

https://alzconnected.org/discussion/76101/care-at-home-unsustainable

I figure being the sole care giver for my spouse probably shortened my life by a few years but it would be hard to prove. I was talked out of keeping my DH at home a few months ago. I miss him and visit him almost every day. I am enjoying my freedom and reconnecting with old friends.

Timmyd

https://alzconnected.org/discussion/comment/273173#Comment_273173

I have read that having a spouse with dementia reduces life expectancy when compared with having a spouse without dementia. I am not sure if the data indicates just correlation or if there is any causation.

persevere

Almost 3 years ago I was having a lot of issues with where DW was, retirement coming up, possibly moving to be closer to kids, etc. There is this inflection point I think in the beginning when you find yourself having to perform bathing and toileting and whatever and you start to go into panic mode. My primary doctor made no bones about it - he said to put her in a facility. And I was seriously thinking about it. But I didn't. And yes, I still lose my mind occasionally. But I have a helper, I have hospice. She sleeps at night (with the help of meds). It is a long and difficult struggle. You will know when it is time not someone else.

marier

My DH is stage 7 and progressing to not being able to stand or assist in his care. I have hospices, VA help a son and grandson who live with me. All help. It is still difficult and at times I am an emotional wreck. I do take advantage of respite often and i get to walk every day. I am 74 and my DH 77and we are into this for 13+ years. I do not know if it is sustainable. I try really hard to take each day as it comes and stay away from what ifs. If the time comes for placement it comes and I will be able to say job well done. Placement has its own issues too. Good luck and God Bles.

jfkoc

I would certainly evaluate the advice however since your wife is still up and going to Drs I would first look at bringing in outside help.

There are pluses and minuses to placement. Placement will not eliminate stress.

Take your time always remembering neither option is set in stone.

airwolf172

Thank you to all who’ve responded. I’m rereading responses to refresh my memory. I’m still deliberating over MC placement, including discussion with immediate family.

harshedbuzz

https://alzconnected.org/discussion/comment/273225#Comment_273225

That's an interesting question.

I would suspect it might be a mix of both. In terms of causation, I could see where the constant stress of caregiving could lead to things like high BP and make things like a healthy diet and exercise difficult to make happen. It can be hard to manage one's own routine screenings as a 24/7 caregiver which could result in a poorer prognosis when a condition is addressed later than it could have been.

In terms of correlation, certain lifestyle choices tend to be protective around dementia. If a couple shares a diet and lifestyle, it makes sense that they may both have similar core health issues even if manifested differently.

HB

airwolf172

https://alzconnected.org/discussion/comment/275123#Comment_275123

Good observations. Thank you!

Victoriaredux

I just don't think any human body is truly capable of the 24 hour vigilance required to do care giving for an unpredictable number of years without doing damage . Sure a parent of small children have to watch 24/7 but they get to see the child learn& grow.

After the sadness of actor Gene Hackman's passing as a tragic example you should have a plan in place if you suddenly fall ill - an alert system, a check in system .

Also, consider if you are sidelined by health or worse who will be able to step in and care as much as you do. Your love and attention is an irreplaceable care factor for your LO. Keeping you healthy is priceless for them .

SiberianIris

The right time to place a loved one in residential care is dependent on many factors - some are within our control while others are not. The sad fact is that many caregivers die BEFORE the person they are caring for. An even higher percentage end up with debilitating health issues of their own due to the unrelenting stress of caregiving. This article is food for thought:

https://aliyahealthcare.com/what-percent-of-caregivers-die-before-spouse.html

People are telling you that being a sole caregiver is harming you because they've seen these situations play out time and again, and they care about you and your loved one. Sometimes when we are enmeshed in a situation, we can't see what others see.

Everything can be going well and then BANG, a crisis hits. Who is available to step up and take care of your loved one while you're incapacitated? Who is available to take care of you if you're incapacitated? Your loved one may not need or be ready to go into residential care, but you need to have support in place in case of, or to avoid, a crisis. Having this support for you both will allow you to keep her at home longer.

howhale

Lots of good input representing the range of options. Take in all the ideas, suggestions, etc. you can. Knowledge is power and you cannot not go wrong listening. But, in the end, you must make a decision and you alone. You will have to live with whatever decision you make for the rest of your life and you need to be comfortable with that forever. No one, and I mean no one, will have to live with the outcome of your decision for your loved one but you. Get the input, listen to it all, consider it and then make your decisions so that you can live with it. Does caring for your loved one yourself or at home possibly cause you harm? Sure, it might. But only you know what will allow you peace of mind throughout and afterwards. Best of luck with your decision and so sorry you even have to e in this position.

tboard

https://alzconnected.org/discussion/comment/273225#Comment_273225

It has to do with being a caregiver for a spouse with dementia.