Is it too early?

Glopark

My dh has EOD. His father did and stayed at home until he could no longer eat. He died 1 month after entering memory care. They lived in another state. In my mind I have always expected to keep him home until he got to the stage of being incontinent. He is 13” taller and I could not physically take care of him. However every day is an extreme struggle. Today he kept insisting I leave because we were in his house not mine. Last week it was a constant struggle with keeping him here as he wanted to go home. I am not in the least offended by his not knowing me and know the “going home" issue is common.  My problem is the constant hours long conversations of trying to keep both of us safe.  They are more frequent.  I've mentioned before I have ptsd and had to retire at age 50 on a medical retirement.  I am 6 years older with several comorbidities.  Upon the urging of friends and Family, I have decided to place him in memory care.  This feels very selfish on my part but I cannot go on like this.  I have several friends, including one who worked with Alzheimers patients, who have told me that trying to go on caring for him is going to possibly irreparably hurt my health.  Thoughts on memory care please.  Am I treating him wrongly?

Ernie123

I am so sorry you are going through this. To answer your question, no, it is not too early. As a caregiver you can only do so much on your own and you are wise to seek help before there is a crisis. There is no return to the past and his condition will only get worse. When you are so stressed it is hard to think clearly but from what I have  experienced you must be strong and make this transition. It will be very hard on you but it is what is best for you both. A good memory facility will provide a calm pleasant safe environment. I wanted to keep my DW at home forever, but after seven years of decline when her condition deteriorated and her delusions and anger were something I could not manage I knew it was time for both of us. Even though I knew I had no choice I still felt intense grief, guilt, doubt and sadness. A year later we are both in a better space. She is well cared for in a wonderful facility with social interaction and activities designed for dementia residents. I have slowly adjusted to living alone. Know you are choosing the best option and don’t second guess yourself. Please keep posting because you will find support here from people who understand what you are going through. It is a blessing that social media like this forum allows total strangers who will never meet in person, but who share the common challenges of dealing with dementia, to seek advice, rant, give advice and offer solace to each other.

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Ed1937

If you didn't treat him right, you would keep him home even if it meant you could not give him the care he deserves. Ask yourself two questions. Can you give him better care than he would get in a facility? And would keeping him home cause your health to deteriorate more than it already is? If you can keep him home, give him better care, AND do it without it being detrimental to your health, keep him home. I don''t think that's in the cards. I know it's hard, and I'm sorry.

ElaineD

Dear Glopark,

You will have another source of PTSD, Glopark.  My son had PTSD from his military service, and then from the damage of staying in an impossible marriage for 16 years!

If good Memory Care is available and financially feasible, NOW is the time to make the placement. You already KNOW you won't be able to provide 'physical' caretaking.  I know I won't be able to care for my husband physically because I am severely physically disabled.

As my son said to me about my situation: "Mom, this is only going in one direction."  This was when I called my son after I had hand surgery.  I was so helpless that was 'losing it' with my DH's behavior.

You cannot help your DH if your health is destroyed by the constant strain of caring for him.   I have heard from friends that they 'waited way too long'. They only really realized how damaging their role of caretaker had been to them, physically and emotionally once they place their LO.  No one has ever said to me that they placed their LO in MC too soon.

I know this is so hard.  It will never get any easier than it is now.

Hugs, Elaine

abc123

Hi Glo, you have gotten excellent feedback. I hope it helps you make your decision. My 84 to Dad has been caring for my Mom at home for about 8 years now. I wish he would place her. The socializing would be great for her. A routine would too. My Dad is stubborn and won't place her, at least not now. I guess he's going to wait until he drops dead from a heart attack. Please do what you have to do to take care of yourself.

Glopark

Thank each one of you who replied. Each one of you have made it easier for me to make my decision. We take our 1st vaccine shot tomorrow. I will be interviewing centers while we finish up the doses.

Jane Smith

Hi Glopark. I’m sorry to hear about your situation. 

Try to remember that it’s hard to be a caregiver and that this is not a job that any of us can do, 24/7, by ourselves, with no help or support or backup, forever.  Sometimes we think we can do it all. Sometimes we think we should do it all!  But it’s not sustainable, especially when we are older, have our own health issues, and have things we have to do:  work, take care of other people, sleep.

You’re not talking about leaving him by the side of the road.  A facility has staff 24/7 to handle ADLs, meal planning and nutrition, cooking, cleaning, laundry, supervision, ordering and dispensing medications, bathing, toileting, activities, and more. 

I cannot speak from the experience of placing a spouse, but with my mother and other family members with dementia, placement was a good choice. For my mother in particular, it was a good match with the facility and the care she desperately needed that I could not provide. My only regret is not placing her sooner.

If what you are doing now is not working, then it’s time to try something else. It could be placement now or later, it could be increasing help at home, it could be looking into options like adult day care (when Covid permits) but it sounds like you are beyond stressed. Caregiver burnout is a real problem and it will do neither of you any good if you become ill, or die, from the stress. A shocking number of caregivers die before their loved ones with dementia. Don’t be one of them. 

If nothing else, looking at facilities now will give you options should you need, right now or at any time, to consider a placement.  It’s much easier when it’s not a crisis.  

Facilities in my area have stepped up their online information and changed tours, because of Covid.  Call and talk to places.  Look at their websites.  They should be happy to talk on the phone and do a video call with you and even a video tour of their facility.  Your local Alzheimer’s chapter may have a list of local facilities, as a starting point for you, and your local Agency on Aging/Senior Services Office probably does as well. 

Good luck and I hope you are able to get some options.

Wyoaviator

I concur with Victoria2020.

In this situation, we see THEM. We see THEIR problem. What we don't see is the most valuable resource they have. His most valuable resource is YOU. YOU are the one who manages things, who looks ahead, etc.

I know it feels selfish to take care of yourself....we have all be there. We all know the agony of your decisions. Just remember that in order to take care of your LO, you must take care of YOU.....FIRST.

The people at the facility are professionals. Does this mean they are perfect? Absolutely not! You will have to stay on top of them. They will make mistakes. But don't kid yourself, you made some too. At least with your LO in care, you will have a clearer mind, be better rested and have more energy to tackle the management of care rather than doing the care.