What do you do when you cannot get a late-stage dementia patient to move?

Also. My Dad does make requests and she does pretty much whatever he says. But I learned early on that as her daughter -any request from me would NOT be reccived well.

I should add that I began preparing for a method of triggers, patterns, and habits whilc Mom still did some self care, I very closely watched the movements she made when standing, taking her partial out, brushing her remaining teeth and bathing. I established words and phrases to act as triggers by what I Said at moments she initiated a movement. I say it EVERY SINGLE TIME exactly the same way. And I know how to move or hand her things that prompts her hand or body to respond in a way that initiates the action needed.

How loving and patient you are lrhawkins! I know what you mean about cues and I've used some (like starting to put on the pants can start the standing pattern . . .) but often resort to the gait belt because I don't want to take hours. Your way is much more caring. I'm going to work on my approach. thank you.

We run into this often with my mother. Reasoning with her is fruitless and merely Creates arguments. How Could it do anything else when her reasoning ability is gone. Our guiding principle in MOm's care is using routine , habit , and triggers. The part of the brain where habits or stored is still working in Mom- although nearly everything else is not. So we use that. I Never instruct her. But I use activities or words that trigger an ingrained habit to get her To move.
For example, Getting up from the Love Seat js particularly difficult because she is warm and cozy. First I sit down next to her -cuddle a bit enter her warm cozy world to Come out of it together, ' Then I will slide a hand behind her just a bit to rub her Shoulders. oh-She Likes that! Soon I Can get her to move forward to the edge of the seat So I can rub her lower back. I have her Walker already sitting jn front of her Only once she is fully engaged with me do I initiate standing -but I still don't say it. I may notice something across the room that needs fixed. Or talk about my being hungry And Wanting lunch. Still rubbing her back- Now with my hand at the Small of her back giving a slight pressure out and up with my movements I say "Lets take care of this or that" Then a moment later "Let's do this Now and I Stand my hand Still on her, Generally She Comes right up with me.

If he's in that much pain, you might ask the doctor for "lidocaine" patches. They can be applied directly to the areas that hurt and alleviate the persistent pain. From others' reports, there is a product called Salonpas patches that work similarly, but available over the counter (without a prescription). If the doc wants to prescribe oral meds, a word of caution: almost *all* pain relievers have some major side-effects, not the least of which is constipation; many have more long term effects like liver and kidney complications. Whatever you get, it's worth researching the long-term side effects. There's nothing like providing a cure that's often worse than the original problem.

P.S. for HolyCow. My dad was always very stoic. Your reply helps me see that perhaps he's been in a heck of a lot more pain than I've realized. I've been thinking that it's the dementia that has made him confused about moving, yet sometimes he's very clear about not wanting to move. Your 2nd paragraph describes they way he acts! If you have other ideas on how I can help ease the pain, please share. He has meds and I put Ben-Gay type ointments on his hips to soothe the ache. Sometimes I place a pillow under his knees but he usually moves it during the night. Thanks for the insights.

Jeanne and StandingAlone, thanks for putting the three choices out there. They've been swimming in my head, yet for some reason it helps to have them delineated by someone else. #3 isn't an option. I don't need a bad back and I want to be in good shape to play with my grandkids (that's one reason among others . . .).

So, I've started getting more help but it's the short-term option.

Thanks all and keep in touch!

What JG said.

I think you have at least 3 choices to consider:

1) Get sufficient in-home help and in-home equipment to continue to care for your father there. Some of it will be covered by Medicare. Some of it will have to come out of Dad's assets.
2) Place Dad in a facility that can deal with his dementia and also his arthritis. Visit him often. Have breakfast with him before you go off on a job search (and hopefully soon a job) and/or tuck him in at night. Be a loving daughter to him but give up the day-to-day hands-on caring to professionals.
3) Continue trying to do it all alone. Damage your back and damage your mental health. Perhaps come to resent your father and then feel guilty for that feeling!

Late stage dementia usually leads to placement in long-term care centers or hospice houses. It is very difficult to handle effectively at home, and nearly impossible for one person to provide all services needed.

I send you warm wishes. This is a hard job!

I use to look at older people and get a bit agitated about how slow they moved or hearing them moan when they stood up, or tried to reach down for something...it was annoying. Fast forward 50 years and whoa...it's me, with arthritis and all the moaning and groaning and hardly being able to stand up or get down on the floor and have to crawl to grab hold of something to get up. How lucky am I to get every ailment that BOTH sides of my family had!!!

I can tell you for sure it hurts, every stinkin joint hurts, you may want to stand and yet your body is not willing to do it. You find yourself sitting there on the edge of the chair counting, 1, 2, 3..pull....and hopefully up I go....then I have to groan because every step hurts!

I too would suggest that you see about getting some in home help. If Dad stays in the same position all the time he will get bed sores, which are horrible to try and heal. I can attest to the fact that it is painful, pills or not!

Good luck and God Bless!

Takecare you have the right idea -use their money for their care-also medicare may pay for w/c's and hospital beds-you will get a statement each month but you do not have to pay anything sort of rent to buy after a while it will be paid off by medicare-you will need a note from the doc and PT and OT people know how to get it done if they are responsible.

What your are experiencing is part of the progression of dementia and it difficult to watch a loved one decline and try to care for the individual. There should be a dementia support group or department of aging locally that can help. If your dad is a vet, the is support through the VA. My mother has dementia and we have some of the same problems. agingcare.com has lots of information about benefits. don't threaten him as he may not understand everything that is going on. There are lift assist devices that can help but you will have to go a medical supply store or check with his PT/OT person about them. I am spending my mother's money on her not saving it for my siblings inheritance. She and my dad earned and deserve to reap the benefits. I have her in adult day care during the day and use caregivers other times when I need to. The most important thing you can do for your dad is TAKE CARE of YOURSELF. Good luck in making some difficult choices.

On a serious note .. maybe it's time to put in bed rails? If he's in a double bed, place pillows on the side where he's rolling to. And lay a blanket or pad under him to help you roll him - that way you're not doing all the work. Do a search on Youtube for turning a patient in bed (the ones I found had special sheets, but the concept is the same).

Still love the fire ants. At 6 degrees outside with subzero wind-chill factor, they will be hard to come by.

Dad is far enough along that sometimes he really doesn't know whether he's standing or sitting (it seems). He knows to put his arm through an arm hole when helping him dress, but he doesn't even try to button/unbutton clothes any more. I don't like calling paramedics all the time, but thank God the fire station is close by, because I certainly have had to!

Last night a tall neighbor came over to help me get him from the wheelchair (a recent addition to my household items) to his bed. He literally had to hold him up while I changed him.

When I try to roll him on his side in the bed (which does hurt my back), he resists with the force of a much younger man. I know he's afraid of falling, but really, it's not like I've tossed him on the floor! Just the way it is, I hear.

Just trying to buy some time as I job search . . .

Thanks for responding. It's just nice to discuss with those in similar situations.

Ladee I like your thoughts-no way should anyone break their back lifting a heavy person-I called 911 every time the husband fell-most of the time he fell because he was too lazy to lift his feet up when walking-it was over 50 times they came sometimes twice in one day-then he wondered why he needed to be placed.

fire ants are cheaper.

Oooh .. if he's on the cheap side, and not ready to 'go over that hill' .. tell him, "That's fine dad, I hired one of the paramedics to come help me turn you .. It's only $35 every time he comes in." Punch the numbers in the calculator .. "Yep .. that's only $2500 a month. You can afford that, right?"

I just know that I cannot do it alone any more.

he can not get medicaide because he has too much money-what else is he going to use his money for relatives who can not or won't help-he will have to spend down and then medicaide will kick in-he will just have to pay up front-It will cost at least $4000.00 a month that will use up the money fast then medicaide will take over-an elder's money should be used for their care-what else?

extra glaze.

sorry, im such a d**k but a d**k witrh a dozen killer cinnamon rolls. its effin hell on earth.

Wordy2Shoes - He seems strong, but is it possible he is near the end? In his position, having a strong heart and body can be a problem, because he could linger long past the time to go.

Assuming he isn't starting a steep decline, ask him how long he plans to live. Tell him that he is sentencing himself to death by refusing to move. Tell him trying to move him hurts your back. Tell him if he won't help you change him, you will end up in jail for elder abuse.

Give him an extra pain pill before you ask him to move, or time it for half an hour after he gets the pills. Don't underestimate the depressing effects of pain. See if he can get something extra from his doctor.

I'm so sorry this is happening. This job is so hard.

Sounds like besides the physical problems, there is some depression going on. Sometimes seniors feel that there's just nothing left to look forward to and no hope of it getting better. Perhaps you could talk to his doctor about this and maybe an antidepressant would help. If you could get his mood up to where he wants to do something again, but the hip just won't let him do much, then a hip replacement might help. I've had so many patients tell me they don't know why they waited so long for the hip replacement 'cause they feel so much better and can do so many things they hadn't been able to do for years.

Thanks captain for the laugh. Too late 195 Austin. Already caregiver. He is not eligible for medicaid anyway. Private pay is only option for facility. Sought big, burly live-in, but didn't work out. haha!

it is time to get social services involved-it may be time for placement but he needs an assestment-trust me you do not want to spend years being his caregiver-he should be started to apply for medicaide and if it works out so he can stay in him home for now with aides but do not take on the job of caregiver and if you work do not quit your job unless it is something you want to do-now is the time to get him help or placement-if you have siblings who will help that is great but do not expect them to want to help or to help-keep us posted on how you are doing-we educate each other on this form.

fire ants. you need some of them little red fire ants. those s**** will make a hippo run for water.

Thanks for your responses. It's been several months since I could get him interested in doing things. In June, he was walking around the neighborhood (extremely slowly of course) and doing some exercises with me or the physical therapist. Sometimes it seems like he just doesn't feel like he has anything to get up for. He doesn't even want to take car rides any more, which has always been a draw. I play music, read, and try to get him to "play Uno" or other games, but he just sits there. I feel bad for him (and for me because somehow I have to get his briefs changed!). I have an occasional home health aid but it looks to be time to get someone for rise and shine as well as tuck-in. And sometimes I think he's tired of just me being around, so perhaps a facility is better for him now anyway.

Does he like any kind of music? Try playing some that he likes that has a good beat and maybe he'll be more open to moving. Music memory lasts long into dementia from what I read. Maybe others will have a good idea. And do you mean moving like walking around moving, or just getting him up and out of the bed?

You should call his doctor and see he can order home health aides. He should also see and orthopedic hip specialist, because hip pain can be excruciating. If he is in good health, hip replacement may be an option.

can you get him to go to PT (or get his PCP to refer in home PT)? there are lots of sitting-in-the-chair exercises for seniors--lots you can find on youtube. i do them with my mom. hopefully, you can get him in a good frame of mind so that he wants to help himself get better so that eventually, he can go with you to fun out-of-the-house excursions like slowly walking around parks or museums. lotsa luck...