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If you are able, look into companion care for a few hours 2-3 days a week. Someone that can help look after your DW and free you up to continue doing things you love. It will be a little up front work getting the right person and building trust among all of you but worth it. As she declines, increase the outside help. It’s a horrible disease and no one’s fault. Whatever you can do so that you can see her as your wife and not just someone you take care of may help with future resentment. Also, any house work that you are able to offload to outside companies (cleaning, yard work, meal prep services) is worth it though I understand a luxury that’s not always possible. Help from others in any way will help with the exhaustion that comes from looking after a LO. Wishing you all the best.

My therapy for coping with my DH (6 years ALZ) is music. I play the guitar, ukulele, banjo, pan flute, harmonica, banjo, violin, casio. Since he is getting worse, my time of playing is shorter because he always wants to interrupt me with questions. I try & play everyday, playing one instrument. I need this & won’t give it up. Helps keep me sane! I can’t remember what it’s like to have a normal life!

I live in a remote area without resources of any kind basically. My children live in other states. I have a horse. She’s my salvation. She lives ten minutes away at a friends place. My routine is to go there every day for nearly two hours. (I clean stalls and groom and play with the two horses and goats). So far DH is ok with that since I’ve been doing it for years. I can’t go out and ride like I used to because then I am gone too long, but I do hop on her at my friends house now and then. That’s my slice of heaven and peace. I miss the trails.

Oh, boy! I am sitting here having the same thoughts. Is this how I will live the rest of my life? I really have no answers, but I appreciate how well you've articulated our shared dilemma as 24/7 caregivers of our partners. I am young 951) and would like some more form life.

It seems to me that in a true extended family situation, caregiving would be shared and the whole experience would not seem so catastrophic. Sadly, most of us are doing this alone and the occasional visits from family or relying on strangers for paid respite care is just not sufficient for us to retain a life of our own or sense of self. Sorry for the pessimism.

FYI DH is 80, probably early stage 6, obvious symptoms for 3-5 years, diagnosed 18 months ago with Alzheimer's.

My DH is 92 with ALZ Stage 6 and multiple co-morbidities. I placed him in his current AL residence seven weeks ago today. Prior to that I was his only caregiver for seven years, not even realizing that I was dealing with the early and middle stages of ALZ. I still find myself at the facility 4-5 days a week being way too involved in his care for my own good.

I have found that having a creative outlet and a physical outlet are both necessary for my sanity. My creative outlet is quilting, making baby blankets for a charity that distributes them to the NICUs at local hospitals. My physical outlet is walking, preferably the local trail, but around the block multiple times or even as a last resort in bad weather, a treadmill. When DH was at home and still able to use a phone, I would carry my cellphone and do yardwork and garden, and he would call me if he needed me. I also keep classical music on nearly all the time and read in the evenings (don't watch TV).

Having said all that, I had a pity party this morning, feeling sorry for myself because I have no real in-person friends, and neither of us have family willing to help at all. Over the years I lost myself to caregiving and isolation. I will be attending a monthly caregiver support group starting next week and hope that I can gain some perspective on what my role should look like going forward. Right now I feel very lost and lonely.

Hi Stan, I love your comment on this “good time” It is so incredibly scary about the what to expect days, months and years ahead. My DH is able to go about his daily life quite well. But, I would not leave him alone now that I know what could happen. It’s remarkable how they shift between ok and probably not ok. So I try to fill his days with fun and at the same time I’m running myself into the ground doing everything he wants to do. When I get to my limit, I sing (usually loud, hope the neighbors don’t hear) Singing keeps me from crying and my DH seems to be amused. We keep the good times rolling for as long as possible, for our peace of mind and precious memories to endure , I think.

Love love this!! 💕 TY

FWIW, I second the notion of accepting help from others you trust whenever/wherever. It's a lesson I must learn over and over after being on my own with no close family nearby for the first 3 years of this. As my DS put it, "Mom, you've got to learn to accept help". I'm so fortunate that it is even offered and available.

And as for keeping my own sanity, I am a fan of singing, too. Not at home but I do belong to two different choral organizations. The help I accept is to allow my DS and DDIL to keep an eye on my DH so I can attend the rehearsals and concerts. I practice on my own at home, too, but hopefully no one actually hears me. Rehearsals account for about 2 hours each for a total of 4 hours a week. It's a godsend.