What do you do for caregiver burnout when your parent refuses all outside help?

BurnedOut2x
Sometimes the family must just wait until the patient finally falls and even injures themselves to get them to give in to accepting outside help.

Just imaging someone like me who has cerebral palsy (in a wheelchair and can’t use her hands) taking care of 89 yrs. old Dad has mild to moderate but progressing multi-infarct dementia. Also. the worst part is he knows and gets angry that he's losing it but yet still thinks he can function on her own (he barely can't). He refuses to pay someone to help him. Mom is doing much better in the facility, but she wants to come home... She can’t because she’s fall risk.

It's so hard for me and anyone! It’s like a guilt trip.

Calling APS at least will keep you from being charged with neglect to your elderly parent. It has been documented that you tried to help your mom and not ignore her situation. I am all for elderly rights, but not at the expense of their adult children who try and then have their hands tied. The right to chose comes with personal resposibility!

I have had APS in twice! She is more lucid when they are there, (probably because she knows what will happen if she's not), and so, they won't help! Their policy seems to be to keep the elderly in their own home as long as possible. Last time they thought that if she had hearing aids she might not be so frustrated and would therefore feel better. They said they could help her to get some, but either they did nothing or Mom didn't follow through on it. Anyway, she still doesn't have hearing aids. That is part of the problem when trying to care for her, you have to talk louder so she can hear you, then she misunderstands so you get louder, and before I know it we're yelling at each other!

Stamdingalone is right! Sometimes you have to take the hard road when dealing with the stubborn elderly. Tell them if they don't agree to outside help, you will call Adult Protective Services who may force them into a situation they may not like.

As long as there are still a few that will help, she's going to use them until they can't take anymore. I don't know of anyone in the family that could live with her and she refuses to move in with any of us. Until those few holdouts agree that she needs assisted living, at least, we're stuck. You see no one wants to be the one to disagree with Mom, (Grandma, sister, aunt, etc.).

I'm with Skinonna...there comes a time when, sad to say, the hell with what the elderly person wants, it comes down to doing what you must for their own safety and your peace of mind if you know for a fact they can no longer life safely on their own...Get help to come in anyway, and like Skin said, what are they going to do, throw a tantrum? Oh well...

I don't think you can absolutely trust ANYTHING a person with dementia says. They hate you one minute and love you the next. Their back is killing them with pain and then they are raking the lawn saying they feel fine. So....we live in an alternate universe... it's like alice through the looking glass. How really can she refuse outside help though. Someone comes, you leave. What will she do? She can stay in her room I suppose and sulk. Yell at them to leave. But what can she really do?

I've been trying to come up with a supportive answer but I'm not much help today! Sorry!

What can you do when they refuse outside help? My mother is 83 and has several health problems including atherosclerosis. The worst problem now is her advancing dementia. She has been living alone since Dad died in 2002, but it is obvious to everyone but her that she can no longer do so. I have tried to get her to move to an assisted living apartment, but she refuses to go. She says she's fine. She has already worn out most of our large family of caregivers and is currently wearing out the few that are left who are still in her good graces and are able to go over to her apartment and help her with her activities of daily living. We, her children, are not young ourselves and we have health problems too. She has fallen several times and has been told it is dangerous to live alone. At times she is lucid enough to realize this, but in the next moment she will fly into a rage at the idea that she is no longer independent. Her doctor has talked to her about assisted living for months now but as soon as she leaves his office she forgets or says He's not God, He can't tell me what to do. She is not supposed to be left alone at all, (according to the doctor), but she won't listen and at times she just plain runs people off. She will say whatever nasty thing that she can think of to get rid of anyone that talks about different living arrangements. We have even asked Adult Protective Services for their help, but they are useless. Most of the family thinks, She has free will, let her alone until she has another fall which will probably be worse next time and they will put her in a nursing home. I hate to think of that, but what can you do? We are out of resources and out of family that can help.

Buddy - have experienced same. YES to the blackouts --or blockouts! Its hard and I'm learning as I go along -- but can't take it personally. They are frustrated and if they were private and independent before -- "caregiving" seems more like an intrusion to them than the loving support we intend. I've gotten accused of stealing; money grubbing; trying to take over and then next minute the loving smart daughter "thank God you were here to help". I honestly know my mother although she appears very lucid at times -- truly doesn't mean to be thoughtless and mean; her own inner frustrations with aging just comes out and we just happen to be on the receiving end. I escape to another place, vent to my husband or friends and blow it off -- and prepare to start it all over again.

I am right there with you . . . I totally understand.

Even in these very dark moments, if you are open to it . . . try to see the humor. I'm certainly not talking about "yucks" . . . humor can be reflected in the irony of the situation . . . in the sheer crazy volume of the situation. It's not about being a "Pollyanna" . . . try to remember the catchy words and the tune of "Don't Worry . . . Be Happy" . . . goes like this . . . "In life you're gonna have trouble . . . but when you worry you make it double . . . don't worry . . . be happy!" Remember that you are doing a wonderful thing for someone you care about and if you treat them the way you would want to be treated (Golden Rule) then you have done absolutely all you can. Hum that silly song and the weight of the circumstance my well lighten a little bit. Try it . . . try it now!

I just read all of these comments & suggestions & it is helpful to hear it all. I KNOW that I need to take care of myself too or I will burnout. My Mom is 83 with dementia & we had a very bad weekend with her. She said she hates me, wanted me to get out of her house and all I am after is her money (there's not much money at all). I tried to comfort her by telling her I love her, I hugged her & looked her in the eyes & talked quietly. Nothing calmed her down. The next day it was like it never happened. Can they have a "blackout" (?) and not remember these outbursts? It's all I can think about. Thanks for any help.
Buddy

Dear, Wondering, your peace and strength will come from above. God put in our heart a desire to love and serve, and your joy and rewards will come from above, as well. Know that you can ask God for help, and he will answer you and show you great and mighty things. Your time with your parents/family is limited and precious. Treasure every good memory, because the rest will fade quickly. We have limited time to make a difference, and you are. You are doing for another what they cannot do for themselves, and that is a precious gift of your time and talents. Sending prayers for help and comfort. You can pour out your heart to God and he will listen, give you wisdom and guidance, and love. Know that this time will pass quickly, and it is a privilege you have been entrusted with. May God be with you, and bless you! ~ SS

I too am taking of my mother in law (what a job). She as given up on everything and if it was not for my husband taking me shopping and out to dinner this 24/7 job would kill me. Yes it is much harder than working a full time job away from home (I have retired now but this job is harder than anything else in the world. I have lost interest in all my hobbies I had before. I am sooo sad,tired all the time. I only want a little peace. Where do I find it?

I hope this website will be a lift in your spirit 24/7, too!. It's beauty is that is can reach those in the boonies, and those of us who are loonies. Ha Ha. I love it. Sorry you are struggling. I know my burden seems lighter when I can unload here, or help another. It's been a godsend and a blessing.

Are you getting adequate rest? Are you able to enjoy any type of hobby? I know that's a silly question, if your time is spent caring for your Mom. How about music, or reading (for both of you)? Do you and your Mom laugh together? That can help both of you get out of a funk. Have you ever heard of Laughter Medicine? It's so good for the soul and spirit! How about fresh flowers on a bed tray with a special snack or treat once in awhile? Something out of the ordinary to lighten the moment and brighten the day. Make it a surprise. How about Christmas in July? Or funny hat day? You could tell her to dress up, and paint her fingernails, and serve high tea. Or serve a special breakfast at "txmaggie's cafe," on a cute little table in the living room... Pick out some old music, take Mom by the hands, and tell her you want to dance with her (gently, and while she's seated, of coarse.) Looking at old pictures sometimes gets the juices flowing. OK, you get the idea. Be creative, and it will lighten both of you.

How about a Daughter Appreciation Day? Pretend it's your award ceremony. Bake yourself a cake, and serve your Mom a piece, telling her you got first prize for being the most attentive, loving, caring daughter in your county that day. Make yourself a blue ribbon and pin it on and smile away! Remember how special you are to care for your Mom.

And while you're at it, make a "Welcome Home!" sign for your husband's return. I used to do that for mine when he worked away from home. I'd write a letter of appreciation, and put it on his pillow, and make his favorite meal. It'll make you both feel great.

And if those in support groups are feeling altruistic, perhaps you could ask for a visit one day. How great would that be!? How about a visit from some ladies at a local church? Some may just like getting out themselves. It could be a great blessing to you and your Mom. Thanks for being on these boards. You add a lot to them, and we are glad you're here! Here's praying you find joy in your journey! :) Take care, and please keep posting.

24/7 is entirely exhausting, txmaggie. It is what I am doing also. One of many ways I acheive balance is to live my life on an entirely different schedule. Early mornings when Mom is sleeping are great for me-time, quiet time, prayer, fellowship and devotion, and sometimes a walk or short drive to get a cup of coffee, or just feel the wind on my face. It requires being very attentive to your Mom's periods of greater and lesser activity, and it has worked for me. Nothing is perfect, but I can't imagine being of any use to myself, or Mom if I didn't enjoy precious moments to myself. Another technique for me is that I don't do laundry daily unless I need to. Other times, I relish seeing an empty hamper! It's the little things that make me happy, which is why I say precious minutes! lol Physical therapy is an exhausting mental process, however. I am sorry that is added to your caregiving routine. The other thing that helps is that I would never have the time, or energy to go to any offline support group. It would be just one added activity to my day, so online support is the way I choose to balance caregiving support resources.

Thanks for your responses. Yes, I'm here 24/7. Been doing this for almost 2 yrs. Mom is 92, has mild but progressing multi-infarct dementia. Worst part is she knows she's losing it but yet still thinks she can function on her own (she can't). Needs meal prep, medications, frequent checks during the day because of falls. She can't be left alone. Tried the adult daycare for several months but she hated it. I do have a lady coming in one day so I can get errands done. Nurses come in 1x/week and they are starting physical therapy again next week. My husband works away 3 weeks, then home 10 days, so I'm really alone while he's gone. We live way out in the boonies, 1 hr drive to the nearest town and support group and they meet too early in the day for me to get there on the day the lady comes in. Maybe you are right, jellybeans, perhaps antidepressants would help me get out of this funk. And to SecretSister, thank you, also. Knowing there are others out there to offer emotional support is a huge help. I'm so thankful I found this website!

Are you with her 24/7 at home? Maybe taking her to adult daycare but telling her that she's going to a volunteer place to help others or a senior center would help. A lot of times, they don't like going AT FIRST, but after awhile, they get used to it and really enjoy it. Also, you could have a caregiver come in while you are there, say it's a friend of yours, let her know the caregiver and then leave her with the caregiver or have the caregiver take her somewhere fun like shopping, the hair salon, out to eat.
You might benefit from joining a support group, counselling, antidepressants. Do things for yourself, something just for you.

Dear tx, I hear you, and you're not alone. How can we best support you? Are you the sole caregiver? What types of help do you and she need? I can think of lots of responses, but don't exactly know your situation. There are many answers depending on your needs. Without knowing those, we can pray, but will wait till you respond with more information. So glad you wrote. Hope it helped just to get that much "off your chest." At one time or another, many of us feel the strain of Caregiving, and many of doing it alone without outside help. We're here to encourage and be supportive. Do you need rest you're not getting, respite? Take care, and hope you find some answers that will help.