Therapy Homework: How Caregiving Affects Relationships

@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

@labrown I agree with @judimahoney that introducing people in the house that look like a friend but operate as a caregiver could help. I remember that's what I had to do with my mom. Also, I'm wondering if a therapy dog in your house, might settle him down, and still let you do the work you love. Although now you would have an additional responsibility in the house. You mention the church, that he's familiar with on good days. Are their people in the church he knows that could help you? So, you can get out and do the things you need to do. With the teenage grands, who I know are busy, can you schedule a once a month movie night at your house and stream something they want to see, with huge submarine sandwichses and the like, to get them there. Or at least one a quarter. Workarounds.....I know it's hard, but whether he likes the outside care or not, we all need workarounds. My heart goes out to you, because I remember my own mother who wouldn't open the door on the help I tried to provide for her. We finally got her to adjust to one person, who she later claimed was her good friend.
Best, Karla

@judimahoney
Yes, this really hurts—missing out on the lives and relationships of my grandchildren. Travel is so difficult now. Thanks for sharing so much of your life here. It helps me realize my feelings are part of this disease.

@kjc48 Karla, I always enjoy your up beat and positive responses. Your suggestions are all so good and I can honestly say I have tried most of them. It doesn’t matter who it is that is in our home to be with him, whether it be family or friends or potential carers, he becomes very agitated and will leave the house to try to look for me as soon as I am out the drive. The pup that I work with in the dog therapy program is actually our Labradoodle so we have a therapy dog living within our home…actually two, our 15 year-old Yorky Poo also worked as a therapy dog at one time. He loves both of our dogs. But I have to keep an eye on him with them because he has started trying to drag them around by the collar like a toddler does. As far as the Grands are concerned, when I’ve had them over to the house he will go into the bedroom and stay. He knows he is not the same papa that he used to be. He has aphasia and cannot participate in meaningful conversation and makes it difficult. This disease is hard for all of us.

@labrown I may be grasping at straws on this one. but bring someone in who introduces music to him, like that Alive Inside Documentary with Dan Cohen on utube. I can't stop talking about or thinking about it. Irritated or extremely docile dementia patients, that came alive inside that facility, when music pods were put in their ears, with tunes they remembered. It might be just what your spouse needs especially if others are in the house helping you care for him. I can't remember who on this site told me about Alive Inside, but it's amazing, what the tempo of musical tunes did for all those patients. It might relax him enough to where he's not so adamant about people coming in.
Best, Karla