Therapy Homework: How Caregiving Affects Relationships

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…

There is no denying that dementia caregiving is isolating. I have tried to cope by texting my friends and family just to stay in touch. Knowing what is happening in their lives takes the focus off of mine. And if they are struggling with something I always try to give encouragement as I think what goes around comes around. I also have several at home projects in the works at any given time. Minor home repairs/upgrades, sewing clothes for myself, scrapbooking, gardening, reading, though getting to the library can be iffy. Sometimes I take him with me and he is ok to sit in the car while I grab a couple of books. The novels I choose usually involve some kind of challenge for the protagonist that is always overcome but not always as they had thought it would. Sort of how I think my life is right now. One new habit that I have incorporated into my daily routine is to read a few pages from my book for caregivers: "Daily Comfort for Caregivers, 365 Devotional Readings" Barbour Publishing 2009. first thing in the morning with my coffee. Sort of an attitude adjustment exercise. It has helped me remember that I am not alone. That there is always One to lean on and listen to my prayers for patience and compassion. Knowing that I am doing God's work here on earth by caring for my husband gives me the feeling of satisfaction that I think might otherwise be difficult to attain. Lastly this forum has given me such good support and caregiving ideas for my husband and myself. I am grateful for all of you who post here. May God bless you in your caregiving roles.

@lolozinger, welcome to the group. Are you caring for someone living with cognitive impairment? How are you doing?

@colleenyoung Hello Colleen, Thank you for your welcome. My husband was diagnosed with Alzheimer's and CAA last March. Because of the CAA, he is ineligible for any of the current treatments for slowing down the disease. He also suffers from extreme anxiety and he has a difficult time having an appetite. He has shut down all communication with friends and doesn't want to go anywhere. Luckily, we have a very supportive family. Our son and his fiancé are moving in with us to help. Our daughter, son-in-law and grandson live nearby and bring us support and the joy and curiosity of a nearly two year old. Unfortunately, my sister was also diagnosed with Alzheimer's in August. She is not in great physical shape and has no partner nor children, so I am her caregiver as well. Since May, I have been managing her emergency visits to the hospital and transitional care, becoming her POA, finding an assisted living situation and moving her from her shared house-- because her housemate was not able to manage her meds and other health needs, understandably. She is settling in and has lots of friends who want to help her, but I am still her primary caregiver.

As to how I am doing-- it is a day-to-day process. Because my son is living with us, I am still able to get to the gym three days a week and this has been essential for my physical as well as mental well being. We are re-arranging our house to accommodate my son and his fiance moving in and that is a lot of managing and organizing and sorting while also taking care of my husband's emotional needs around change. I miss my life with my husband. I miss him, though he is still here. I love my family and I have several very supportive friends. I am grateful for so much in my life, but not happy in the role of caregiver, especially because there is no end in sight. I have a life coach, but think a therapist would be a better fit. Finding one with knowledge of caregiving and Alzheimer's is my next project.