Must I be the "activities director" for my bored, aging parent?

I understand I'm doing same thing and seeking outside agencies for help to get some physical and emotional excersize with transportation. I don't think it's selfish to want your own life while caring for an aging parent. The yawning the boredom.I can't be an a care and activity director 19 hours a day seven days a week. Assisted living and nursing homes have several people working shifts. Where's the help?

The only thing you are doing wrong is attempting to work 80 hours a week. Seriously, cut back on one job or the other, you are killing yourself.

What about daycare a couple of days a week, it would give her something to do and allow you to sleep/focus on yourself.

I couldn't agree more with all three previous answers. You can also consider getting professional care for a few hours everyday or however many she can afford. Of course, there is AL or NH where there can be so many activities she will never be bored. My MIL loves the social aspect as well.

I think that your mom is being short-changed. I don't know how far you have to go to get to your night job but I assume that adds at least a half-an-hour a day you are gone. So you are gone at least 42-43 hours a week, and of course you need to sleep, bathe, etc. which is another 56-58 hours a week. Certainly you want and are entitled to time to yourself and time for your own interests. So how does Mom fit into this schedule?

Mom needs and deserves some stimulation. An adult day program could provide that. So could bringing in a companion a few days a week. If she were in a care center she'd be able to play bingo and games with mild exercise involved and watch movies with others and enjoy live entertainment and lots of crafts and ... the list goes on. They also involve eating with other people and interacting with staff.

Perhaps living with you is ideal for your mother in many ways, but on the activity level it is sorely lacking. Maybe if you weren't working an additional fulltime job you would have more energy to devote to "entertaining" your mother. But I think the issue is more that that is a role you are not comfortable in. You have little in common with your mother. That is perfectly OK. You don't have to provide the entertainment/stimulation/activities yourself. But I think everyone will be happier if you find some other way to meet those needs.

All good suggestions but your mother has to be willing to participate in activities and associate with other people. My mother wouldn't allow anyone else in the house and flatly refused to attend the local seniors centre because "it's full of old people" ... she was 85 at the time.

She spent the last three years of her life in a NH with wonderful staff and activities all day every day but she refused to participate, hiding in her room, moaning and whining, plotting her escape to some 5 star resort with servants, meals cooked to order and room service and screaming down the phone at me every day until, on the verge of a nervous breakdown, I changed my phone number and made it unlisted. There are so many interests and activities but you can't force someone to participate.

My gut feeling is that she's got you just where she wants you so why should she be bothered with anything or anyone else. If you can, you must try to change the situation now as, with the progression of dementia, it will only get worse over time.

I greatly appreciate all of your differing opinions of what the problem is between my mother and I. You all have great ideas. With the economy the way it is, I have to work two jobs to be able to pay the bills. Each job doesn't even pay $10 an hour. I work 4 nights a week and have 3 off. It takes 10 minutes to drive to work. I sleep about 3 hours daily when I have to work. I am too close to retirement age to start looking for other employment. It's said that employers don't discriminate because of age, but they do. We all do what we have to these days, to survive. I love my mother very much, though I guess it didn't sound that way in my post. I promised her she would never have to go into a NH, because there have been horrific abuses done to my own relatives in many NH's in our area, which we have witnessed. Her own father was left in bed all day and night with his underwear and pants unbuckled and around his ankles under his bedcovers, because staff got tired of taking them down to toilet him. Often, they let him soil himself and lie in it. He developed giant bedsores before we discovered this, as he was unable to speak, move, or defend himself. My grandmother's roommate was treated so roughly when being bathed by two CNA's that you could hear her screaming down the hall, "no! please! you're hurting me!" Mom and I were outside another nursing home one afternoon and saw two CNA's giving an old naked man an enema with the curtains wide open, so we could see them swinging him in the air by his hands and feet and throwing him on his side like a dead animal being swung onto the flatbed of a pickup truck. Another woman with Alzheimer's was shoved out of a room and her wheelchair slammed against the wall. We didn't see all of this and stay silent. We filed complaints and reported people, but nothing was ever done. NH's are well-protected. Workers have no time to be gentle with patients half the time; they are overloaded. Consider yourselves lucky to have found wonderful NH's for your parents. It's rare. They are not always places for socialization, but more often places where the elderly are warehoused, neglected, treated roughly, never getting visitors, and with no respect. Those of you who have relatives who like being in those places....that's great. As for adult day programs, those available here are filled with adults with developmental disabilities (aka mental retardation). My clients go there. She would be shocked and humiliated to be placed with individuals who color in color books, trace their hands on construction paper to make Thanksgiving "turkeys," and the like. She still has her pride. She, too, doesn't want to be in a place where they have "old people." She is not willing to socialize and participate in outside activities. I have had home health care workers who abused my mother when I was not looking. Mom happened to mention it out of the blue one day that a worker was touching her sexually. I fired her and reported her. She is now working for another home health care agency, doing the same thing. Another was too busy texting someone and didn't notice mom lose her balance and fall. Fired. So yes, I guess I am short-changing my mother by not always keeping her entertained. I apologize for being so selfish and self-absorbed. Thanks to those of you who seem more understanding of my situation, and I do apologize for getting so "steamed up."

do you belong to a church? Many have volunteer opportunities to visit the elderly. I do that through my church and have made a couple of friends in the nursing home I visit - to chat and play cards and checkers.

Goodness, I don't know where you live but here in Canada nursing homes are strictly regulated and inspected often. Some are not so nice but I was lucky enough to get my mother into one out in the country, family owned and operated for 50 years with wonderful staff who went above and beyond. If you do indeed look at NHs forget those owned by corporations as they only care about the money and look for a family owned and operated one.

I live in Maine. I wish volunteers were available to make home visits with my mother, so she wouldn't have to be with only me. Not for my sake, but for hers. There just aren't a lot of people willing to work for no money, these days. We have a place called Senior Spectrum/Spectrum Generations that sets elderly and disabled people up with volunteer visitors. But at this point, no one is volunteering. Another thing I didn't mention about my mom: Her personality has changed 200% since getting the dementia, and she has "burned many bridges" with friends and relatives who "used to call." She has accused some of stealing, and has said many hurtful things to everyone. She doesn't get calls anymore, because of her hurtful comments. I have had to explain to many of them, in order to reassure them that it's the disease talking, not my mom. She used to be the kindest, most giving person in the world, but now she is extremely bitter and angry towards everyone. They say they understand, but why should they keep calling her and subject themselves to more verbal abuse? Naturally, she hates all of my friends, because they take me away from her on the rare occasions when I go out. She calls them such filthy names. Her conversations sometimes go on a continuous "loop" about people she hates. I don't know if there's anyone she really has a kind word for, anymore. I am not exempt. She imagines that I want to steal from her or hurt her, and she uses the "f-word" toward me quite often. How weird it is to hear that coming from an 84 year-old woman! She also hallucinates, seeing people outside the window in the kitchen. She says she can see right through the thick, heavy curtain (which is impossible) and says there are sometimes large groups of children and their parents trying to see inside the house. Once, she threatened to call the police, but I had to talk her down. My cousin is a godsend, always being available to come spend time with mom while I'm working, if I feel that she's sick or acting too strangely. Mom dislikes her too, but has only told me about it. Lord help us if we lose her. I am on a waiting list to see a counselor, to talk about my issues with depression and taking care of mom. I am on an antidepressant which gives me enough energy to do what I need to do to keep the household running and do my jobs well, but sometimes I have very little energy for anything else, including my own hobbies and interests. Right now, I have pretty much not seen any of my friends since Thanksgiving, and because I'm depressed, I choose not to. Right now, it's 5pm and mom's been napping since about noon. When she gets up, we plan to order pizza (her favorite food) and most likely play her favorite game, dominoes. That will pass the time until I have to get ready for work. My shifts are Monday - Thursday, 10p-8a. I spend my three days off at home with her, mostly. I get paid to work with her Monday through Friday, 9a-3p, and 9a-2p on weekends. It's not really work to me, because I'm now getting paid to do what I've already done for over ten years. It's an atypical job, in that I am not supervised. I report all my work activities by mail/email. My timesheet is mailed to the office. I only see my boss once every three months, just to renew paperwork. I am my own boss and am able to come and go as I please, as long as the required work is getting done each day. I feel very thankful that I was hired for that, as we were scraping by, living paycheck to paycheck for a long time. Well, we finally have our first snowstorm of the season, so I must go out and shovel. Thank you all for your care and comments.

Pizza and dominoes sounds like a pleasant evening. Enjoy!

I am so very glad to hear that you are getting paid for some of the hours you care for your mom. Many people ask if that is possible. It is good to know it is in Maine. Is this part of an Elderly Waiver program, funded by Medicaid?

I do understand your need to work that other job. We all have to eat! I'm sure you do it well, and you have covered the possibility that Mom will need help. You are a highly responsible person. My main concern with that would be your 3 hours of sleep those days. All mothers of young children get by on 3 hours of sleep once in a while. All caregivers of persons with dementia get by on 3 hours of sleep once in a while. We all mostly survive it! But to have this recur on a continuous basis is taking its toll. Remember that sleep deprivation is a torture device. Lack of good sleep is especially hard on persons with depression. (I know these things from personal experience and from seeing a psychiatrist and sleep specialist.) You do need your job. I understand that. You need your sleep, too. Can cousin cover a few hours on those days? I don't know what to suggest, but if you do get some volunteer help, perhaps you can arrange it for days when you need a few hours to sleep.

A couple of us suggested day care programs. I had a wonderful experience with that for my husband. The program had a wide variety of participants. They also had a separate program for persons with dementia (my husband didn't need that yet.) The nurse read a chapter from a book every Monday, and that was my husband's favorite thing there. Also they put together slide shows of people's vacations. He enjoyed that, and was very proud when his pictures were featured. He did not like the crafts, unless they were making something nice he could give me, so he sat in the quiet room and read during those sessions. He enjoyed the outings -- to a restaurant, a ballgame, a zoo, etc. So when we suggest this option we are not suggesting a pre-school setting. If you do not have any adult day programs in your area that treat the participants as adults, that is too bad. It might not hurt to double-check. Perhaps there are some in addition to those you know about for your other clients.

I am thrilled to hear you are on a list for counseling -- not that you have to wait, that isn't such good news -- but that you are addressing this need. Good for you! You deserve all the support you can get!

When I said that your mom is being short-changed, I did not mean that as a criticism of you. Persons with dementia often do best when they do have a "social director" for part of their days, but that doesn't mean that you personally have to take on that role.

I had a volunteer visit my husband for a couple hours twice a week. Sometimes I slept those hours, and sometimes I went out. She was his social director for those days! The spent a lot of time looking through scrapbooks and my husband telling her stories from his life that I'd heard a million times! I certainly hope the economy improves in your area and volunteers once again become available to you.

Is mom being followed by a doctor who knows a lot about dementia? There is no cure, of course, but sometimes symptoms can be improved.

I wish you and your mom well. Keep in touch here and let us know how things progress.

I'm 59 and just starting to help my parents. Doctors appt., shopping, ect. Dad not driving and Mom never drove. My boyfriend and I are working on 2 rooms in their house. Living area and a Bedroom up stairs. Both parents moved downstairs. This alone as been very stressful. I live 30mins. from them and all appointments are another 30mins away. I'm sorry I know this is off the subject of your discussion but reading your story is like OMG what am I getting into.

Wow. I was going to jump on board and say "I know what you mean!" until I read all the responses. BIG HUG liverlips486. Sounds like you're caught in a bit of a trap, and it never really matters how we get into these traps, it's more important to find a way out.

Both you and your mother deserve a good quality of life; when I took the course on caregiving here at the local Alzheimer's Society, all the advice for caregivers to look after themselves really resonated; most of us have a capacity for giving that can easily and unintentionally become unbalanced. For example, I can plan to curl up with a good book for an hour, but if either of my parents (who both have dementia) requires something from me, then my cherished "me time" is the first thing to fly out the window.

I had a mini melt-down last weekend because the one day I had planned for myself was usurped by the fact that my sister's husband landed himself in the hospital; she couldn't do the weekend shift and... well, we all know the sacrifices involved! But I took the opportunity to think about solutions, and that solution might be finding a person in the area who can take over from time to time. I don't even know if this is possible, but I'm going to look into it. Baby steps.

In any case, I often feel the same guilt as you are describing; I sense that my parents are not stimulated enough. My mother demands all of my attention, and I worry that my father is not getting more (he's the quieter of the two). I resent having to "entertain" her at times, because - like you - I'm very self-sufficient and never bored with my own company. I keep thinking, why can't she be more like me? But she's not perfect, and I'm not perfect, and nobody's perfect and we're all just trying our best.

It sounds like you're an amazing woman with a great deal of strength, who is just worn out. It's OK to be worn out. A few days off might be just the cure, if you can find someone to help out. It feels hopeless at times, as I've discovered in the last year. Now I manage my time carefully to ensure quality breaks, and this has made a huge difference. Once my batteries are recharged, it's like I'm a new person. I sincerely hope you can find a way to give yourself a break now, and come up with a plan for the future. Perception is everything!

I read all the comments above and feel compelled to chime it. Your mother has to be willing to help herself and there's nothing you can do to change someone in their 80's. Sure it's easy to say send her to daycare of don't work so many hours. The truth is that you, as well and I don't want to be in these situations. We're in them because there is no choice. We're the only caregivers to stubborn and sometime lazy elders that won't budge. They are the exception to "they'll do better in LT care because of all the activities etc." WRONG! They won't because they don't want to and yes, they have us right where they want us. I so empathize with you. I'm in the same position. Nothing in common with my mother except DNA. If I don't entertain her, she stays in bed all day and watches TV. She wants to go out but when she does she has a panic attack or an "accident" and we have to come right home. I try so hard to stay calm but I get a knot in my stomach and my face shows frustration big time. When she sees me later in the day she asks "are your nerves better now???!!!!" REALLY?
To all of you that say daycare, LT care, let me just say yes it's lovely in theory but go ahead and try it with some of these elders and you'll lose the last remaining nerve in your body.
Hang it there, caregiving is tough but sometimes it's even tougher because there's no give at all, just take. Bet you can't walk away because there's no one else. Don't beat yourself up thinking your falling short, your not. Wish there was a clear answer but if there is, I haven't found it. I could place my mother in a LT care facility but she'd consume my last bit of sanity with her misery there. I like you don't have the heart to do that, I could never walk away and I just remind myself that someday I'll get my life back. What that life will be, at what age and at what expense is questionable. Please know that there are so many of us out there dealing with different but difficult issues, beating ourselves up, running on fumes, putting our life on hold and sacrificing so much. For those of you that say there are options, sure there are but with moms that will make it worse and dole out the gift of guilty in boundless supply. I started seeing a counselor and I would suggest the same for you. It helps for someone to tell you that you have nothing to feel guilty about. You're an angel with a very big heart. Hang in there xoxox

The trouble with dementia is I think it is a condition that everyone hopes they won't get.....then when it happens to one of their friends they cut them off because a) they don't want to see their friend disappear b) they are now not treated as a friend but as a stranger which is something else they can't cope with and for some the fear that it might just come their way is too great for them to visit. Before we all shout shame on them we should also consider their aging friends for it isn't easy for us to deal with and we KNOW the reality - for the older people it is just a reminder of what could come their way and they quite frankly don't want to know.

If that is the problem then you could perhaps set up with other caregivers that you swap parents for an hour or two - in effect they get someone who does care but needs a break from their wn LO and the LO also gets to see someone else

Hmm Jude, I think that you have the nucleus of a brilliant idea, sort of a senior's "play group"! Wouldn't it be great to be able to meet other caregivers at a senior's centre or some such location to share a cup of coffee and trade war stories while our charges got to socialize with someone besides us?

thats exactly what I mean cwillie. You don't even have to take them to a centre - just to each others houses (if of course they can travel) if not exchange carers for a few hours - at least you won't be hearing the same old things over and over again

I know the feelings you have. I played this same role for seven years. It is difficult. Mom didn't want to go be around "old people" so the senior center was out ! I took her once and she was very impolite (to put it nicely) to the staff and "old people" She was in her 80's. People always gave the same old answers and so on and so on. I am much like you, except married and my husband stayed at our little condo for the first 5 years (no one thought mom would be able to live so many years with stage IV cancer) then he moved in to help as things got worse. I work and worked 60 hours a week as a special ed teacher while taking care of mom and gave up me. I resented it but still feel guilty that I didn't do more. How could I ? I don't know but it seems like I should've. There wasn't money to bring in outside help, and that is a precarious situation in itself. How to trust strangers in the home. Anyway. There are not any simple answers and no one here should be judging or criticizing. The truth is many of us have had to tough it up and out and work through all the anger and guilt etc. My best wishes for you. However, it certainly seems with so many of us older adult children caregivers there couldn't be some sort of co-op with other caregivers to share duties errands etc. socializing, with in our own communities. Like young mothers with little kids do. Hmm.

I've thought exactly the same burnedoutannie. I think the problem with community caregiving is we're all too burnt out to even consider exchanging our hours to care for someone's parent. I run and hide whenever I have time to myself. I'm so emotionally broken I'm no use to anyone. Still, everyday, I get and do it again because there's no one else who will. I've been doing this for over 12 years and to be truthful, I didn't think my mother would like this long either. Some elderly people just won't agree to be around "old people" that are deaf and repeat themselves and are in need of company, even though they are in the same boat. I wonder if they ever wonder how we feel about being around them instead of enjoying the company of our peers. I've become my mother's "best friend" since my father died. Before that, I was a burden.

I'm reading this question and all these suggestions and marvelling at what few crumbs of privacy and self respect we caregivers are willing to settle for.
I've moved beyond being my mom's caregiver in my home (10 years) and have had her settled for the past 16 months in a very satisfactory assisted living facility. Life improved for me considerably and though she would deny it, her life is as best a 94 year old woman with dementia could ask for.
But my life still revolves around her endless demands and needs. I manage her financial affairs and drive her to medical appointments. I bring her to my home for dinner every couple weeks. I call her every evening I am not at her side.
I visit her 3 times a week for at least two hours each time. (30 minute drive each way). I shop for and deliver snacks and new clothing. Do her nails. She wails each time I arrive how she has been waiting all day and begs me not to leave. I frankly am tired to death of being her personal slave.

dear magdalana I hear you. As caregivers we compromise and sacrifice so much of our lives and still beat ourselves up for not being good enough at it. The truth is that most elders would take as much of us as they can get. I feel like my mothers entertainment team, accounts payable, chef, medical assistant, counselor, cheerleader, public relations, hairdresser, personal shopper, maintenance dept and yes, personal slave! 12+ years and I've exhausted my shelf life. Demands keep growing, I keep dying a little every day. There's no answer because even in LT, responsibilities remain to make sure they are properly cared for. Those of us with compassion and a conscious will not walk away but it will clearly be the hardest job we've ever undertaken in our lifetime. Never going to do it to my kids.

the thing with Alzheimer's is that no matter how much you do, its never enough because they don't remember! Its a vicious cycle. I work full time too so my weekends are precious. I love my personal time with hobbies, watching movies, reading etc. However I do know I have to relieve my father who is FT caregiver too so on many weekends I go over. This past weekend I spent 7 hours with my mother, took her to the hair salon and then out to eat. The next day on Sunday, I was over for half a day visiting too. Yet on Sunday she said that its been so long since she's seen me that she thought I had forgotten all about her. sigh...now I'm behind in laundry, cleaning, grocery shopping etc. I can't give up both Sat AND Sun, its one or the other. And even at the hair dresser people say to me, well read a book then she'll be pre-occupied. Nope. She talks incessantly to me while waiting for her hair color to set. It doesn't matter if I look involved reading, she interrupts me every 30 seconds. Do you always wiggle your foot like that? Why don't you get your hair colored too? Why don't you want to? why don't you get your hair cut? Why not? Then the same questions start all over again within 5 min. its enough to drive someone insane! So finally I put the book down. That's what she wants, I finally figured out. She wants ALL my attention every moment. Its exhausting. I honestly don't talk that much in a week as I do the few hours I'm with her. I'm not a demanding, needy person. She has been all her life and nothing has changed. I will NOT be like this with my children! Its so selfish IMHO. Why do we cater to their impossible demands anyway?

Interesting as I read the above posts that most of these moms were needy and demanding their whole lives. My mother was always a taker and never a giver and as she got older she go worse. She never understood anyone's needs but her own. This makes caregiving so much harder because there are no fond memories to get you through. Can't blame age or disease when from the get go they were like this. What I don't get is why we continually tolerate their expectations of us, never once worrying about what it's doing to us or if so, not caring enough to put our happiness in front of theirs. If they're of sound mind, it's pretty selfish. If my mother hadn't done such a good job making me feel guilty my whole life, I might be able to choose what's best for me right now. I wonder if there are elders who have made their wishes clear and have planned on assisted living and LT care when necessary because they don't want to burden their children. This to me it selfless love. Sounds to me like most of us are doing this out of obligation and wished we had a way out. My life would be so different if my mother has chosen me over herself.

Liverlips486: Oh, my word...you are going to BURNOUT soon! GET HELP NOW BEFORE YOU DROP OVER AND FAINT!

Contact your local Alzheimer's Association, they have 24/7 counselors on duty with whom you can brainstorm about what you can do.