I see someone had commented a while ago, and can't find it now, about their personal identity being wrapped up with the AD spouse. That is exactly how I feel. All thoughts, consideration and care involve my AD husband. I find I have no desire or ambition anymore to try and pursue my own interests, like I used to. Don't have ambition of energy to clean, cook, pursue hobbies, etc. Never know when I will have to stop and shift into caregiver mode. I think the fact I just went through the demise of my Mom, where she was so dependent on me, has me worn down, and it continues through my husband, although at this point not as demanding. Being 70 doesn't help either. Every year we loose more energy. Don't know how those of you older than I handle things.
I know this is not good for me and I keep trying to fight it. This website and venting to others with similar problems is a lifesaver for me, too.
Imohr, dear lady you have been thru the wringer once before with caregiving for your mother. its natural you are worn out and tired of the role. having to think ahead of whats on your plate with an AD husband plus his disabilty on top of that is just overwhelming to say the least for anyone young or old. the only suggestion is to make a life for yourself a few hrs /wk and get out and do something for yourself that makes you feel good. join a club or a gym and be around other people. you must get out and have some time to yourself more -one round of caregiving is enough for anyone, much less a second so soon. have a checkup with your dr and see if you have any vit deficiency that could alter your energy levels, ie-B12 etc. me too, i am in the throws of being a homebody as well and getting into a rut just like alot of us here -i had an extra morning out today and another on friday and got some medical exams going for myself finally. i hope you can find yourself and some fun in life soon. divvi
Imohr, I remember back in the late 70s, when we had four children (in school activities, scouts, Little League) that I was __________'s Mom; with the social functions we attended, I was ______'s wife. I think I realized that I was not seen as ME to anyone! In the 80's, once all the kids were in school (some had even graduated by then), I got a job and became __________'s assistant!
I do know that I have my own friends, other than the two couples we are very close to, that I see regularly. When I can't take any more, I can leave the house and go and meet one of my friends and visit for a little while. I am fortunate that I have my job, so that I don't have to be in caregiver mode 24/7 like you do. Just last week, some younger professional friends of mine told me about special seminars that they were attending this month, things that they had planned; others were moving into a new house and had a week old second child! Life goes on and I'm so happy for them - talking, thinking and planning for their futures. It dawned on me that my life centers around my husband and his needs totally.
Life is more than taking care of our loved ones. Life is living to the fullest the hand you have been dealt. This hand will close and another will open. We will be stronger for it. We have to work hard not to drown in today - to try to find something to enjoy about our life each day. It is the only way I'm making it through this - but I will make it through - and so will you! Try to find one thing each day to do for yourself, even if it is at home. I started a new photo album the other day. It made me think about something else for a while.
Thank goodness for Joan's website and everyone here.
I just re-read this and I'm sorry if it comes across as preachy - it's meant as a cheerleading session! <grin>
Imohr, after my mother died, I was not myself for two years. I didn't realize at the time how much I had given of myself to care for her for almost four years. Divvi gave you excellent advice. I was just rambling on, as I sometimes do here! Thanks for putting up with me!
Mary i think you gave a very good description on how we lose self identity. the _____'s wife, or _____ assisstant, very true all of it. in my case i think loss of self worth along the way, would be how to imply as well- which leads us to indulge in pseudo-living everyone else life around us and forgetting about our own joys. divvi
Thank you all. You are all great. I like rambling, I am a rambler myself. Yes I am on anti-depressants and don't think I am really depressed, just kind of floating around but it mostly floats around my husband. I sometimes wonder what I will do when the time comes I am alone rambling around in this big house...My plans tentativly are to get involved in volunteer at hospital or something else that I could get myself interested in. I really wish my health allowed me to work a few hours a week. I love to stock shelves in retail, and visit with people. I do know staying home all the time would not be good. I hate housework.
Imohr, after what we've been through, I'd stay away from the hospitals!!! Maybe libraries, book stores, gift shop at the zoo, etc. We will need to re-adjust our minds!
Lmohr: Housework you hate huh. Ok everybody that loves housework raise your hands........(pause)........ See it was unanimous that we all hate housework. Not a single person raised their hands. I do feel really down and then I come here for a life uplift. You are all wonderful and special to me even though I have been here such a short time.
I'm a tattle tale! Sunshyne and Starling raised their hands! Bluedaze was busy petting the cat with both hands - she loves cleaning up cat hair! <grin>
Well the volunteer works cuts a sword with two sides. Imohr, you would be soooo very qualified to volunteer at a hospital with all the caregiving experience under your belt! but like Mary says, you may could do something else on another day like book shelving at a local library or so.. or work at a starbucks and drink yourself into a cafeinee tizzy everyday ??? lots of options and such a great need too. i know meals on wheels is so needy for drivers and the redcross or womens centers.. you would be so good at any of these. ...can i just generalize this and say ANY of us who caregive to our spouses would be good at this too! some of us find caregiving a second skin while others are on the opposite ends -i know lots of seniors who want to work become greeters at wallyworld! its a job and pays....???haha- divvi
divvi, I thought that would be an excellent job until I was told that the greeters are not allowed to sit down at all! I am fine while I can walk, but standing in one place kills my back. So no wallyworld for me...
My two cats give me a reason for living. If it wasn't for their fur all over everything what would I do all day to occupy myself. Seriously-things are going better now. For so many years I was afraid to go anywhere with husband because of really bad behavior. I have been forcing myself to go out and meet people. Last night a woman I don't know asked me if I was single and I was speechless. We have been married for over 49 years. What do I say. Does there ever come a time when you don't have to force yourself to go out and do things. Do you feel your life has any worth when the active caregiving is over. First raising kids, then taking care of the BIG one.
I will probably just be a homebody like now with my two chihuahuas for company. i have guilt feeling leaving DH for an overnite out, i couldnt leave them either!i probably wouldnt care either as long as i had the internet to connect..haha. divvi
I have thought about the wallyworld thing too, but I can't stand either. Don't know how they expect people our age to stand. I wouldn't like more "active" caregiving in hospital or such but working the candy cart or the like might be ok. Now, the Starbucks sounds like a real deal. I read a short story (true) about this big executive lost his job and unable to find work, started to work at Starbucks. He loves it and makes $10.00 an hour and has hospital insurance. Been there a few years. Don't know how many coffee's they allow him (grin)
Library sounds good, I love to read, when I find a book that is interesting. Seems most I bring home are stupid and I can't figure out how they get them published.
Wish we had a zoo here :::::::
One of the local Mc have a older lady continually circulating during the morning hours, visiting, filling coffee cups and cleaning tables. Wonder if that is volunteer or pay. I expect pay. But I would have trouble getting to work on time. Wonder if she gets "hit on" by those old men???
No meals on wheels. I can't back my car and it takes an acre for me to turn around in. I did parellel park the other day. I can do that better than backing.
With the economy the way it is we may all need PAY jobs by the time we get through the medical bills. I am really worried about the kids. They are in their 40's but haven't saved a thing....Heaven help their kids......
If any of you are really serious about getting even a part-time job at some point in the future, something to keep in mind...If YOU have any type of disability (and it doesn't take much to qualify) look up your local Vocational Rehabiliation State agency. They can help you find an appropriate job with reasonable accommodations. They will even do Vocational Evaluations that include interest and aptitude testing to help you find out what your interests are...you'd be surprise to find out what some of your interests are!! Most agencies also provide other job related services including job placement. Their services are free and unlike most other government agencies, they are grateful you contacted them. Their annual funding is based on the number of people the successfully help find jobs.
That sounds like very good information Stephanie. Seriously, right now, if not tied down, would welcome a job to get me out in public. Who knows about a year from now.
Our agency helped a young man with severe Cerebral Palsy in a power wheelchair get a job at Wal-Mart as a greeter/door monitor. They also hire people of various ages and "looks" as plain clothes undercover security who roam the store as pretend customers monitoring for shop lifters. They don't confront or tackle suspects; they alert the security personel monitoring the cameras and they alert the security person who does the actual confrontation with the suspect. Reasonable accommodations can be a good thing. Once employers realize some of the best accommodations are low-cost/no-cost, they are usually very open to the idea. Sometimes the simplest things can make all the difference in the world for extending and maintaining employment. If a simple chair or bar stool is all it takes to keep a good employee, it is very worth it to them...much cheaper to provide that stool than high turn-over training costs.
All the old cliches and platitudes. I agree, it's very hard to be upbeat when you don't see a future, or you see only a bad future.
I've always said (having observed other household deconstructions and how awful they are) that I needed to get everything sorted out, thrown away, given away, etc. "while I still could". Now I can, and after tomorrow (when I'm working the polls six a.m. to 10 p.m., with sitters coming in as well as our daughter) - I really don't have ANYthing on my plate, except for a few committee meetings, board meetings, mailings and the like which really don't take up any time, and then the zoo when I can.
So I'm going to have to tackle the messes. The attic. My husband's "study" so crammed full of stuff... And the way the economy is, I don't see selling the house anytime soon, which means there's no real incentive to hurry...
I think I'll go play with the cats. If ANYthing can make me happy, it's a cat chasing a toy!! I'll clean up Tomorrow.
I remember many years ago in Brandenton my husband and I took our kids to a laser light show which was a very new thing at that time. As soon as the lights went down the hall started to smell like burning autumn leaves (do any of you need an explanation)
Somewhere I read that if you write something down it becomes real. If you don't write it down you forget you do it. Basically it was advice about dieting, but it works for other things as well.
So I keep a log. It has the stuff you don't want to do. Did I clean something?, attend to business (today it is bill paying and checkbook cleaning)?, what am I making for lunch and/or supper? But I also log about things I know I would enjoy. Did I do something just for me? This forum counts. Did I scrapbook something?
What you need to log is different from what I need to log. But you might try it and see if it helps.
Heh, heh....I was just seeing if you read what I wrote....just teasing! I've only known one woman in my life who loved housework. I often wondered about her mental condition....... <grin>
I must say that I love a clean house......wish I had one. Since AD, it's gone from clean, to almost clean and now it is partially clean....except on Saturdays. What I used to do every day gets done every three days....except I have to have the bed made (which is the one chore my husband still can do)... we don't like to lie down on wrinkled sheets (and they are 600 count - sooooo soft) and the kitchen and bathrooms have to be clean. I only dust every three days and vacuuming has been reduced to once a week. I feel like a slob. You guys don't realize how far I've come down from my two hour cleaning frenzy each day (with four children, two dogs, a cat, a bird, a turtle and anywhere from 6 - 24 gerbils - in their habitat, of course!). In my younger days I could have the house spotless in that time (while the kids were outside!). Now, it takes me all day!!!! Getting older sucks!
ok, I'm the weirdo who likes cleaning! After hiring cleaners all the years I worked and having them take things (and that was the good one!), break things, not clean well enough, not show up, etc., I was happy to take this over when I retired. I enjoy spending a day at home, with the TV or audiobook on, working at my own pace, no one bothering me. And it's one of the few things I do that produces tangible results! I'm not a neat freak, but it's a nice feeling when it's done and everything is pristine (for about 15 minutes). But I know that when DH can no longer attend daycare and I hire in home help, I'll be able to hand some of it over to them, which I won't mind. I've calculated that by doing the cleaning for the last 12 yrs I've saved a bundle--nothing wrong with that!