From a 24/7 caregiver to loneliness - Alzheimer's Disease & Dementia Message Board

rekem · 10-03-2007, 07:36 AM

For over three years I took care of my wife with advanced dementia at home. Recently, in order to get Medicaid approval, she was hospitalized and then transferred to a SNF - permanently. I visit her daily and after seeing her and the other patients in similar condition my emotions get the best of me and I'm get more depressed after leaving. I like to think about the wonderful times we had during our 50+ years of marriage but I can't escape the fact that she will never come home again.
I'm not asking for sympathy - just how have others have handled the transition from home to SNF, the depression and loneliness without the spouse at home. Greatly appreciate any and all suggestions.

Gabriel · 10-03-2007, 08:34 AM

I am so sorry for you loss rekem. Yes, you have expeirenced a great loss and will go through the grief of loss. THe loss of your companion and your work. When the intensity of caring for your wife ended there was major adjustments for you as well. I am not a professional but my best suggest to you is to do what I have done since my parents went to Assisted living. Stay as busy as possible, remember that your loved one is getting the best care possible, and know that you did all you could for as long as you could. From there it takes time to adjust..... for both her and for you.

I wish you the energy, creativity, and good thoughts to get through this difficult time. You were blessed to have so long with your wife.

Love, Deb

tyty · 10-03-2007, 11:17 AM

You do the best by the fact that you stay with she as long as is posible.
Loneliness will be when you will remain alone. Me wife died at 42 after 4 years of posible FTD&ALS, we do not have a clear DX. I stay with her except 10-11 hours/day when I must go to work and now i am alone. Try to stay as long as posible with your wife now, time is short.

savv55 · 10-03-2007, 05:55 PM

Though your situation is different to me as this is your life partner and the loneliness will be measurably worse than mine in the loss of my father (AD and mini strokes) and my mother now in a NH with dementia. I thought I would share some of my thoughts on this.

As my parents progressed through this disease, I often felt like they were already gone, even when I was with them. They were not who I remembered, I could not have any quality visits with them any longer and I visited mainly from a sense of love and duty. When I was with them (now with my Mom), I do not feel uplifted to be there - just more sadness to see her sliding further into this disease. I missed and grieved for my parents when they were both still here and I still feel the sense of loss and miss my Mom even though she is not yet gone. When I'm not with her, I think of her and always feel some sadness. I should explain that I never had any children myself and I'm the youngest so I cannot fill my time with kids and grandchildren as do my siblings. I retired (early) just at the time that my parents were diagnosed so since then my life was/is them.

Do you have family support? If not, perhaps a support group could help you with your feelings of loss and loneliness. I agree with Deb that one must try to stay busy and engaged as much as possible. Continue with your activities and visit your wife for as long as you can, but forcing yourself to stay if it affects you badly is not of benefit to either of you. In time you will find a new routine and some acceptance of your life, though you will always miss your wife - now and later.

I wish you well as you complete this journey. Shirley

Raffeer · 10-03-2007, 06:32 PM

Rekem-
I'm in the same position as you. Sole caretaker for a decade and, for a year now, a daily visitor at the ALF where my husband stays (I don't want to say "lives"). Well meaning friends have asked why I go since he does not recognize me. Frankly I go for ME. It makes ME feel better to see that he is well taken care of. Although the staff where he is are marvellous I have been able to sidestep a few problems because I was there. That is enough reason for me to make the daily run.
There is no answer to the feeling of loneliness when returning to the empty house. No way I have found to ease the loss. Dementia has been described as the "long good bye". It is, and from a selfish perspective, worse than the alternate. The "good bye" just goes on.
After this year I can't say it has gotten easier only that I have become more used to it. The obvious answer is to keep busy doing whatever. I've become quite active in our homeowners association. If that hadn't worked I was planning on going to our local hospital to volunteer there.
I wish I had concrete suggestions for you. Unfortunately I don't thiink there are any outside of the usual platitudes.
Forgive my ramblings but today was not a good day.