Therapy Homework: How Caregiving Affects Relationships

My wife is in "end stage" or that's what her neurologist calls it. She only knows me for about 4-6 hours in a week and otherwise, I'm a stranger, her father, my father or someone else. Friends have disappeared or have died (we're close to 80). my wife can't travel, so we've missed out on graduations and will miss out on weddings.
If it wasn't for our (my) dog, Norm, I would be lost but while she is in day care, Norm & I go for LONG walks in the woods. The walks help me decide on menus, shopping, medical appointments for the next few days/weeks. There are no future vacations or planned visits with friends. Luckily, I have a son nearby who can help out in a pinch or when my wife get physical.

@judimahoney not yet. My situation is a bit complicated.

Not really. We are kind of in the "twilight zone" at this time. That is, not real bad but "difficult". One is very sweet and actually helpful until the older one gets "difficult". I feel like a referee.

@brn2tch This must be so difficult for you. Very sad.

@refugees1 We take one day at a time and laugh as often as possible! We sat outside and watched the kids playing at dusk, and something was said....he laughed and said, "You know, I have a disability, right?" It was funny and a part of him was right there with me!

I have found that as our journey into the world of dementia goes deeper my world is definitely growing smaller. My husband no longer can attend a Respite program, nor will he accept any help coming into our home to stay with him while I go out (any helpful ideas on resolving that issue would be appreciated🙄), therefore leaving him for any amount of time has become almost impossible. My adult children help when they can, but he is not happy staying with them either. I am learning to have deliveries made, order everything possible on line, and schedule my necessary appointments around someone else’s schedule. We try to go to church on “good” days, but those days are determined at the last minute depending how his morning is going. I do have a group of friends that use to be “couple” friends that I try to meet for lunch monthly if I can. I have had to give up my dog’s therapy program that I have enjoyed so much, but I can’t schedule regular visits any longer. Taking him places with me has about come to an end as he is getting difficult about getting back into the vehicle after stops. I talk with family and friends on the phone, but it’s just not the same. I miss being able to spend time with my teenage grands. We use to take them to movies and out to eat and just spend good quality time with them…now their visits are few and not to often. It hurts them so that their Papa doesn’t seem to know them and cannot communicate with them. This new normal is so not what my husband would have wanted for us. He loved to get out and travel, he supported my interest, he never would have insisted I stay home with him day in and day out. It is living life with a toddler again who seems to know how to manipulate me very well. It is a hard road we are traveling on now…

@labrown
Hello:
The only advice I have read from folks on this site regarding having a caregiver come to your home, is to state that the person is not there in a caregiving capacity, that they are there to help you, because you are handling everything alone (e.g., state they will clean around the home or whatever). Then... you can hope that person is a good fit, that they grow on your husband and then, fingers crossed, he looks forward to having them come over and you can slowly ease into leaving the house for longer and longer periods of time. Perhaps a male caregiver would make him more comfortable?
Wishing you the respite you need. 🫂

@dbamos1945 I have been feeling exactly as you describe. Thank you. It is good to feel not so all alone.

While caregiving for six years plus for Ann, my wife of 73 years this Dec, who was suffering with dementia, i felt almost completely isolated. Although I had relatives who were available in times of emergencies, or to relieve me to meet obligations, the only outside contact I had on a regular basis, was with the hospice team aids and nurses. My family, daughter, niece, grandchildren all had jobs and families of their own, so I understood, their time was limited. They did call frequently - but I was able to mange. We had two dogs to keep us company and I loved taking care of Ann and the dogs. Ann never complained, although she did go through the various phases of this terrible disease, including wondering away (eloping) and hallucinating. The book "The Thirty Six Hour Day" was a big help during my learning experience with the minefield that dementia is capable of serving up. However, after my caregiving days were over, there was a period when I was not familiar with the outside world, am still adjusting 10 months on.

@labrown I'm so sorry. I don't have an answer, but my heart is with you. Bless yours. Linda