New here

Stan2

Hi Y'all, I was just sitting here having a pity party when i found this site.

I read many of your comments and much of the advise given and already feel a bit better.

My DW who has been my partner for over 50 years is somewhere between stage 4 and 5. I feel very fortunate in that she voluntarily stopped driving a couple years ago, although she was the office manager for our business before retirement she had no objection to me taking over our finances. She also allows me to track and dispense all of her meds. We will actually go along a couple days with no indication of alz then suddenly she will forget that we went to town earlier today and who came over last night and ask 5 times within an hour whether we bought bread.

i do attend an in person caregiver support group and a couple of the more experienced in the group have said they feel like they have lost themselves, that they feel their caregiver role has taken them over. I am starting to understand their feeling and I want to avoid the feelings of bitterness I recognize in them.I was just wondering what some of you who are in this 24/7 situation do to keep yourselves sane. Thanks for letting me vent.

Ed1937

Welcome aboard, Stan. Sorry you need a forum like this. Do you have family nearby? If so, maybe you could have them stop by just for some conversation. I was one of the lucky ones here who had family come by often. Our kids would also stay with my wife if I wanted to do some shopping or whatever. This was huge for me. Please never refuse help, and don't be afraid to ask for it when you need it. Taking the help does not mean you are weak. It means you are smart.

Stan2

Thanks Ed,

My daughter does live close and comes by frequently, but she has a career and a family also, and I don't want to lean too heavily on her. Thanks for your comment.

trottingalong

my DH has moved into another stage that really affects his short term memory. We live 7 hours away from one daughter, and the other is across country. We moved to this beautiful area to retire. It’s my saving grace. It’s a remote area that’s has no support networks at all. My escape is every morning I go to my friends barn where my horse lives. I clean stalls and sometimes get in a quick arena ride. I used to go on long trail rides almost daily. I can’t leave my DH too long, but he is accustomed to this routine. For how long, I don’t know. We take small walks with our dog, I read and he stares at the tv. I cannot go see my children and grandchildren like I used to. I just treasure his sense of humor and quick wit. I’m sad our world has shrunk. We were rock climbers, mountain bikers and hikers. I knew this could happen since it runs in his family. Luck of the draw. I’m not bitter or resentful. I’m sad for him and I miss my partner. At the same time, I’m glad he has me to help him and I treasure what I have today. Today I cried, but tomorrow I won’t. The never ending roller coaster ride.

welcome to the group.

DaughterofLO

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.

BPS

My wife sleeps all morning but I need to be here when she wakes up so I have got a wood lathe and make bowls, bowls that no one needs or wants but it is therapy for me. I have an alarm on the bedroom door that rings where I work and cameras in the house so I know when she gets up and I can come in and help her with meds and something to eat. I do that for me but the house work suffers and I am OK with that.

avieDa921)

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!

Judy.T.

https://alzconnected.org/discussion/comment/194041#Comment_194041

Stan, I too went to an in-person group. One day I was losing my mind and said just about the same you just commented. A younger man who was taking care of his wife & parent responded. "Don't feel guilty about calling your son for help. He would much rather get that call and listen and help then get the call when you are crying at a total lose." This statement has stuck with me. I now call my kids (37 & 34) Our son will stop by after work for half an hour so I can go for a walk or run to the store. Half an hour once a week will do your mind great. He actually feels better that his is helping. Give your kids the chance to help.

trottingalong

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.

gampiano

Hi Stan,

Having been the primary caregiver through all the stages, I can truly say that my best solution to keeping myself intact ( barely, at stage 7, i must admit) was to hire some help. The few hours of respite kept me sane, and allowed me to re charge and have less resentment of the situation. If i had it to do over again, I would not only have a PT care giver, but also a house cleaner! Why spend your spare time cleaning the bathroom (again) when you could be doing some self care? Learn to be kinder to self!

Also, Meals On Wheels was a Godsend. You always have something on hand for yourself or your spouse, and mealtime becomes very fluid in the later stages.

MUSIC ... i played meditative spa music in the background for at least half the day, sometimes jazz and classical to change things up. The cadence of the new age genres was a soothing background for my stress levels, and helped to soothe my husband as well. I too also play an instrument and i did manage to play the keyboard every day even if it was only for 5 minutes.

Sending thoughts of healing,

Maureen

AlzWife2023

https://alzconnected.org/discussion/67724/new-here

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.

AlzWife2023

https://alzconnected.org/discussion/comment/194150#Comment_194150

Maureen, These are excellent suggestions. Thank you!

fmb

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.

Stan2

https://alzconnected.org/discussion/comment/194164#Comment_194164

I expect in the past when several generations of family lived together in the same household the caregiving was shared among several people and was probably just accepted as part of life. Sadly the way we have "progressed" that situation is the exception. In my case my daughter is actually the only adult person we even know in our town. She does help me as much as she can but she has other obligations as well. Sadly , most of the folks in the "in person" group I attend are in the same boat. They are new to town , don't know anybody, and now find themselves the only care for a LO.

I know things will change as we go down the road but at the moment I consider myself fortunate. My DW is aware of her condition , she accepts it and is an active participant in her care. my biggest problem for now is allowing her to feel some independence and feel that she is contributing but still watch over everything she does. I am trying to use this "good time" to educate myself and prepare for the future but I do take time out once in a while to feel sorry for myself.

wose

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.

Kibbee

Gotta laugh to keep from crying, and singing does help to bring out the smiles. To cue DH to do his clean up during underwear changes, we belt out the Weemo Wap song … only the (slightly naughty) lyrics in our version are … “a weenie wash, a weenie wash!”. The dog howls, the cat hides under the sofa, and the neighbors slam shut their windows. But DH smiles and laughs, so it’s all good.

wose

https://alzconnected.org/discussion/comment/194314#Comment_194314

Love love this!! 💕 TY

Jeanne C.

https://alzconnected.org/discussion/comment/194314#Comment_194314

That's awesome! I can't unhear it (and will probably end up using it myself).

mrahope

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.