Share this:
mnitchke
@mnitchke

Posts: 10
Joined: May 25, 2016

Dealing with anxiety/guilt over spouse in LTC with Dementia

Posted by @mnitchke, Thu, Mar 1 4:03pm

My wife is in a LTC facility. She's been there now for 9 months. I go to see her practically every day. I do her laundry. I walk with her when she's up to it (she shuffles only) & I stay for 2-3 hours at a time.When I leave I feel I am cheating her somehow with not enough of my time. Yet many times she doesn't know I'm there or she doesn't seem to know when I leave. Trouble is it bothers me. Someone recently said to me that I am "keeping" her too close to me. I agree but I haven't found the right way to lose those emotions. I am taking time off this year to do some short trips and I hope that I can take my mind off her and enjoy my travels. Has anyone else had this same situation? Sometimes I am anxious to get there to be with her and sometimes I wish I hadn't gone because she either sleeps or doesn't acknowledge my presence. That part doesn't bother me personally but I say to myself I might as well leave then. Talk about guilt!

REPLY

Hello @mnitchke I am Scott and it is nice to e-meet you here on Connect even under the challenging circumstances you are experiencing.

You talk about many emotions and feelings that caregivers experience day in and day out. It is good that you are able to share them! I was the caregiver for my wife for 14 years while she battled brain cancer. As caregivers we all feel that terrible pull of feeling we are not doing enough for our patient or that we are doing too much. In my case I was often criticized on both counts! Remember superheros only exist in comic books, not as caregivers! So one can only do what they can as best they can in the way each of us thinks is best! Caregiving is a highly individualized undertaking, just as each chronic disease effects each person slightly different so we approach caregiving in our own unique way. I often wished there was a 'one size fits all' template for us caregivers to follow, but there simply isn't!

In my book, and this is only my personal opinion here, you can never hold your spouse too close. That is what love is all about —- and love is the underlying emotion, which to me is what allows caregivers to give the immense amount of work, emotional energy, etc. we each dole out and spend each and every day! Often I was told I should walk away from my wife and her needs more (she chose home hospice for the last year and a half), but there was no way I could be any other kind of caregiver than the kind I was. We were married for 41 years and there was no way I could believe anyone who told me (and many did) that I had to follow the timeline they thought I had too or they believed was right in their view! I couldn't then — and I can't now as I find I am grieving again in my own way and on my own timeline.

I wish you continued courage, strength, and peace!

@IndianaScott

Hello @mnitchke I am Scott and it is nice to e-meet you here on Connect even under the challenging circumstances you are experiencing.

You talk about many emotions and feelings that caregivers experience day in and day out. It is good that you are able to share them! I was the caregiver for my wife for 14 years while she battled brain cancer. As caregivers we all feel that terrible pull of feeling we are not doing enough for our patient or that we are doing too much. In my case I was often criticized on both counts! Remember superheros only exist in comic books, not as caregivers! So one can only do what they can as best they can in the way each of us thinks is best! Caregiving is a highly individualized undertaking, just as each chronic disease effects each person slightly different so we approach caregiving in our own unique way. I often wished there was a 'one size fits all' template for us caregivers to follow, but there simply isn't!

In my book, and this is only my personal opinion here, you can never hold your spouse too close. That is what love is all about —- and love is the underlying emotion, which to me is what allows caregivers to give the immense amount of work, emotional energy, etc. we each dole out and spend each and every day! Often I was told I should walk away from my wife and her needs more (she chose home hospice for the last year and a half), but there was no way I could be any other kind of caregiver than the kind I was. We were married for 41 years and there was no way I could believe anyone who told me (and many did) that I had to follow the timeline they thought I had too or they believed was right in their view! I couldn't then — and I can't now as I find I am grieving again in my own way and on my own timeline.

I wish you continued courage, strength, and peace!

Jump to this post

Hi, Guilt is such a good topic to share about as most of us have that in common. “The Pull”, that was mentioned, I so relate to. I haven’t experienced that anywhere else in my life, as when a loved one needs you. In the world of a carer, we develop that acutely and instinctively. But sometimes my radar of caring is off track. Sometimes less is better, because life doesn’t stay the same, I tell myself, my caring needs to change and adjust too. And it is so hard. I too, had my group of concerned friends telling me “to let go, give him to his brother to care for now, you need to get on your feet.” I didn’t know I was “ off my feet”. My grief comes in waves, I force myself to do things sometimes that are no longer related to caring for my husband. Today I did 4 hours volunteer work outside. Everything in me didn’t want to go. I went. I’m glad I did. I only feel a little bit. These things take time. Take a step in the right direction I tell myself, don’t fall into “The Pit” of Guilt. Wishing you all a good day , with comfort and peace.

I have some of the same problems, although my husband may be very angry when I come, because I wasn't there all the time. He is in a CCDI (Chronic Confusion or Dementing Illness) unit about 45 miles from our home so I visit every other day. He sometimes seems happy to see me and then he may accuse me of not being there or not coming more often. He usually only is able to visit about 15 or 20 minutes and then dozes off and may only wake for an instant to see if I am still there. I usually stay about 2 – 3 hours quietly knitting by his side since his ability to concentrate on a conversation is so short. He constantly accuses me of "running around and seeing other men" because I'm not with him. This is from a man who was an over-the-road driver and left me at home for a week or so at a time for over 10 years. It hurts to think he doesn't trust me now. Many times when I leave I have to remind myself that it isn't him talking, it is his disease and then I cry a little on my way home and go on with what I have to do. After being married for 63 years it is very hard to see a man who was always busy doing things, very friendly with everyone, whistling as he worked in his garage, always fixing things, now sitting in a recliner uninterested in anything and so angry so much of the time..
This is a horrible disease and I hope research can find something to help as my son has also been recently diagnosed with early-onset dementia. He is 59.
Support groups help immensely, See if there isn't one or more in your area that you can attend. They usually meet for about an hour and are a great help. As everyone there knows what you are going through, and sharing is great therapy.

Please login or register to post a reply.