I'm losing my mind!
II have been taking care of my 96 year old mom for the past 5 years. She has lived with me for most of that time ... ALL of the past 2 years. I am single, own a home and have a full time job in addition to caring for my mom. She is very sweet, cooperative and appreciative and i love her dearly. I know it could be worse, she could be cantankerous and demanding, or have severe dementia. So for that i am thankful. She does have some major short term memory loss and a little dementia. I do EVERYTHING for her. She can still (barely) ambulate through the house on a walker but often times she poops out and ends up sitting on it and i push her to the bathroom or wherever she is going.. We use a wheel chair outside of the house. She goes to a wonderful adult day care facility during the weekdays while i am at work. So, all in all, we have a great arrangement. But as time goes on i am wondering how much longer i can continue this without losing my mind. I am a nursemaid to a 96 year old while the rest of my family and friends have wonderful fulfilling lives and my life is passing me by. My brother and sis-in-law do help slightly, but are not able to do what i do. If i were not in the picture my brother would have put mom in a nursing home. I am committed to caring for her to the end. I am so stressed out. My mornings are devoted to getting mom ready... washed, dressed, well fed, pills taken (and i have to keep at her to eat and take pills or she has a tendency to sit and stare, or fall asleep lately). I am too drained to worry about myself, so I end up throwing on the first thing i can find, put my glasses on instead of my contacts, no makeup, and off to work I go as soon as her daycare bus comes and gets her. In the evenings it is usually after 8pm when i'm through cleaning up the dishes and then i have barely an hour before i have to start getting her ready for bed. Some people liken caretaking to parenting and i guess in some ways you could say it is, but in many ways, that only a caregiver could understand, it is NOT. It is stressful and sad to watch your parent turn into your child .. age and decline more each day and wonder when it's going to happen ... when and where and how they are going to die. I am extremely conscientious about following doctors orders and trying to do everything i can to keep her healthy. She has some serious heart issues and is really slowing down. My days off are not really days off because i am caring for her. Two months ago my brother treated me and a friend to an outdoor concert (Chicago) at a local jazz festival and another friend came over and sat with mom at the house. When the band came out i began to cry. I was shocked at my reaction and couldn't decide if i was crying because hearing Chicago live brought back such great memories of my youth, or if it was because it was the first time in forever that i was out enjoying life without having my mom strapped to me. . i I think it was both. and i realized how much i miss having a life. The weekends or days off are the worst because mom just sits and gets so bored. I can’t spend all of my time entertaining her. Although I have a hard time getting much done with mom around, there are some things that I have to keep up with. If she sits too long she gets antsy and says she is so bored and just “sits sits sits”. That is when I just lose it. I can’t be her entertainment. I feel for her. It is not her fault. But she has lost the ability to amuse herself. She is a talented musician but has no interest in playing the piano anymore. She has macular degeneration so can’t read. TV, movies, etc have never interested her. She can’t do a thing to entertain herself. So, when she gets bored I feel like I have to do something to help her. Sometimes I take her for along walk around the neighorhood in her wheelchair, sometimes a drive in the car, sometimes a game of dominoes. But, it is so hard being EVERYTHIGN to another person. I feel smothered and trapped and like I just want to run and scream. My house is small and I have no where to escape and if I go into another room for long, she wants to come too. I try not to complain to friends, family or co-workers because no one wants to hear it and no one understands. So, I am grateful for this forum where I can let off steam and know that there are those who understand exactly what I am feeling. Much of the time I just want this to end, but I struggle so with those feelings because and end means that mom would be gone. Thanks for reading and understanding!
aplaceformom/blog/caregiver-bill-of-rights/
Lizzie... I grew up in Chgo... so, I understand the nostalgia you mentioned about a yr ago when you went to the Chgo concert... I hope you're doing well.
Love to you all!... It's almost TGIF!
That's why I am hinting to my aging parents [in their 90's and still living on their own] that they should consider hiring qualified people to do that type of work [of course, my parent's wallet is spring loaded to shut very quickly before one dollar get out] because I am NOT trained... I don't know CPR... I don't know how to listen to all the different sounds a Cardiologist hears though a stethoscope.... if my parents fell I couldn't pick them up.... if they want something to eat they would get tired of corn flakes with a side of toast... and if I see one more doctor's waiting room I will scream.... plus I am aging quickly myself.
Next, please consider this: No one can provide 24/7/365 care for an impaired adult and retain their sanity. Can't be done. In care centers there are three shifts of trained staff to care for the patients. If help is needed it is just down the hall. The staff goes home at the end of the shift and eats dinner out with spouses, plays ball with kids, has some quiet time alone. Meanwhile the next shift comes in, fresh and rested. Why on earth to we think we should be able to do this all alone, day after day, with no weekends off, no holidays, no privacy, no me time?
It is awesome that your brothers and sister help out some. Thank them. Praise them. Encourage them. It is awesome but it is not enough. If they can help more, encourage that. But if they cannot you still need help. You still need to have breaks, have private time with your spouse, have "me" time. How can you arrange that?
It depends a lot on your mother's financial circumstances. Contact your state's area on aging: https://www.agingcare.com/local/Missouri-Department-of-Health-and-Senior-Services-Jefferson-City-Area-Agency-on-Aging-MO Find out what is available, and where you should call next. Perhaps an adult day care program will be suitable for your mother. Maybe she'll qualify for some hours from a personal care attendant. Things like meals on wheels for her lunch, or housekeeping help may relieve some of the burden on you.
Sometimes we feel that "it is too early to need help already! What kind of a wimp am I?" Believe me, getting help right from the start is one way to help avoid total burnout.
I encourage you to get treatment for your depression. You deserve it. And then to also get additional help in taking care of your mother. She deserves it -- and so do you and your husband.
Your mother sounds wonderful. It's hard for us, but then what must it be like having been that active, engaged, vibrant individual and being aware of your own decline? It seems she's even working hard at that, to make it easier on you. I wish her all the contentment and satisfaction of a life well lived. x
And -- dare I say this? -- sometimes others CAN do just as good a job as we can, or even better in limited areas. As I said, our PCA did a much better job getting my husband to exercise than I could. And sometimes our loved ones are on better behavior with a "stranger" than with us. Certainly their medical expertise enabled the hospice nurses who came into our home at the end to make Coy more comfortable physically than I could. I was there for him emotionally, of course, but was so glad to have someone else there for other aspects of his care.
You sound like a wonderful daughter and a wonderful caregiver. I hope I will have someone as thoughtful of me when it is my turn to be on the receiving end of care.
A few months ago I was reading - without much attention, I must admit, not taking it too seriously - one of those "How To" advice booklets well-meaning organisations are forever handing out to us, so there I was, read read, blah blah, yeah yeah whatever… And then suddenly my eye fell on the questionnaire part which said: "When did you last have a day in which to do whatever you pleased?"
Gasp! I just stood there holding the stupid bit of paper and sobbed my heart out. I couldn't bloody remember. When? No idea.
I felt furious that they'd asked such a successfully emotive question. One that made me think "poor me!" instead of "let's just get on with it, shall we?" I felt as if I'd been tricked into feeling sorry for myself.
But it is, of course, a very good question. And if you are answering it with I can't remember; or thinking of the time you went to a concert and were overwhelmed by the feeling of enjoying yourself - then it's a question you need to make sure you have a sensible answer to. Respite care is the blindingly obvious one, and we're on the waiting list; but I'm a little afraid it'll turn out to be like stopping banging your head against the wall for a week - and then having to face starting again… I hope not. I'll let you know.
Now then. You have co-workers, friends and family who, it seems to me, actually have shown - if not that they understand - that they would like to understand. Give them more chances: they sound like the kind of people who might surprise you and would really like to help. You say "no one wants to hear it" - are you sure? I mean, I agree nobody wants all the gory details, necessarily, or wants to talk about nothing else (remember how tedious new first time mothers are, for comparison?); but your friends do want to know what's going on in your life, and that includes the lumpy bits as well as the smooth. Your old friends may like your mother and would visit her more if a) they were invited and b) weren't afraid of being in the way, which would be great for your mother as well. Some of them may even match you to a T, and also have care giving responsibilities they think no one wants to hear about…
I'm beginning to take my mother to more things with me. Our local book club starts up next week, and she's coming too. Partly because otherwise I can't go; partly because although she won't be able to join in fully she does like the idea in principle; but mainly because I've got past the point of caring whether an activity is "suitable" for very old people and started thinking - well, they can like it or lump it, she's coming. Love me, love my mum.
I know it doesn't get you free. But it does lengthen the leash a bit.
I know what you mean about providing the entertainment. My mother usually picks around about midnight to fancy a chat about the news headlines. And the fact is that by the time you've finished the meds and turned back the bed and done the night time routine after a day of meals and washing and the gay whirl of appointments with the doctor, the dentist, the optician and the hearing aid technician… your social skills are not going to sparkle. A social worker outlining our local caregiver services said brightly: "and it'll give you more quality time with your mum!" Experienced lady, I think she understood the tumbleweed moment that followed that remark. More quality time, eh? Hmm….
So. In your home, call in reinforcements to keep her company, or to keep you and her company. I'm going to start inviting my pub friends to dinner before they go there on Friday night, because at this rate the decade will be over by the time I see them again. If you're doing the entertaining, let it be by taking her out somewhere. And then, just like for the rest of us, sometimes it's going to be a couch potato's dull night in and that's that. It is sad, when your mother loses things that she's always enjoyed (music is particularly poignant, I think) - can't hear the radio, can't see the subtitles on tv, in my mother's case has begun to get upset about sad or violent scenes (she used her alarm to call me in, most unusual for her, and it was to ask me to stop the West Side Story dvd I'd left her watching. "But it's West Side Story! I thought you loved that film?" "I know! I do. But they're being horrible, I don't like it.")… I don't know that you can do anything to fill the gaps previous pleasures occupied. Squeeze her hand and tacitly sympathise? Nothing you can do is going to make her 24 again and brimming with joie de vivre, which I suppose in the end is what they're mourning.
Speaking only for myself, I've begun to feel that the end will come all too soon; and this part I do equate with the looking after small children. Because while it's going on you're climbing the walls and losing your mind and desperate for the time to pass - but once it has, you see that there was, after all, so little time. And it went too fast for you to catch it all. Don't spoil the memories that will be all you have to keep with thoughts of how desperately you wanted to get away. I'm slightly afraid that this boils down to a savour the moment cliché; but what I mean is I'm making this time as good as I can - now, anyway - after a lot of dodgy moments - because I've realised it really will be all I've got left of my mother.
Our caregiving project will be over soon enough. Last chance to get it right..?!
(I agree about the forum. It is AMAZING.)
I cannot say enough good things about getting help in your home. If an aid were getting mom ready for the day care bus while you were getting ready for work, you could probably even live up to your own standards of dress! If the day started out calmer, you might not be so stressed each night. At least a couple of caregivers in my support group chose to have help specifically in getting their loved ones ready for the day. I can see why that is a good choice!
You need more nights out, and some weekend respite. You are in this for the long haul -- this is not a quick sprint. Pace yourself!
If Mom becomes unable to attend the day care program, having had exposure to a paid professional taking care of her may help her transition into whatever comes next. And starting out with the help while you are still in the house, taking care of your own preparation, is a very nice way to break into that pattern.
Bless you for all that you do. I sincerely hope you can keep Mom at home, and bring in hospice at the end. But no matter what our intentions, that isn't always possible, so try to be prepared for the possibility you may need other plans, through no fault of your own.
Best wishes to you and to your mother.