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I usually have him move from the wheelchair to a walker and help him move around to maneuver to toilet or into a chair. He could also hold on to bathroom railings and hold himself up while being cleaned etc. Now his knees buckle and he falls backwards. I can manage him but it seems like caregivers are reluctant to or can't hold his weight. Clearly I will not be able to physically manage him soon - so looking for advice on how to continue move to the next stage.

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Oh boy. I don’t mean to be negative but it only gets worse. My mom has Parkinson’s. Neurological diseases are so tough.

Mom lived with me for 15 years. She started off with a cane. Then a walker. Kept saying that she was going to end up in a wheelchair. Numerous falls. Many home health physical and occupational therapy visits. Then rehab in a nursing home. It never ends. It only helps temporarily.

They lose muscle mass, motor skills, become very weak unless they continue to do the exercises which they don’t have the stamina to do if they haven’t slept well. Even with a bedside commode it is exhausting for them to wake up throughout the night.

I did order a bedside railing for mom’s bed for her to have something to hold onto while getting out of bed. She needed something to pull up on. Her strength at 93 was going down hill. Yet, in rehab she worked very hard. She never stopped and it does help. Ask for home health and rehab if possible from her doctor.

With Parkinson’s disease, the mind wants an action and the body isn’t always able to follow through. Every person responds differently. Medication helps but does not cure.

Physical therapist will use tricks such as placing tape on the floor and instructing their patient to step over the tape in order to take larger steps.

My mom had the issue of tiny, baby steps and shuffling her feet which is typical of a Parkinson’s patient. Plus mom’s knees were wearing out. She also had shoulder issues. Just too much.

I felt awful that she endured so much pain and frustration of feeling like a burden. She expressed many times that she was ready to be with my father in heaven. Can’t say that I blame her.

My heart aches for you. I lived this. Mom is no longer in my care. Long story. She is now with my brother. I burned out. It is emotionally and physically exhausting.

Therapy helped me express my feelings but didn’t change my circumstances. For my own survival I had to end caregiving. I started having my own health issues.

I wish I could tell you something positive. I really do. It’s so hard. I feel your pain and frustration. You are justified to have these feelings. It’s frightening.

Falls become common. Their fear turns into extreme anxiety which is contagious to the caregiver. It truly becomes a vicious circle. Maybe you are coping better than I did. I tried my best. We are all different and we all have our threshold of pain. I certainly hit mine.

Do I experience guilt? Yes. Do I feel like I failed? Yes. I put that on myself. My therapist continually works with me knowing that I did as much as I possibly could and that I had no power to change my circumstances. I know this logically but emotionally I question myself or doubted myself because of never seeing improvements.

I suppose I desired seeing some improvement so badly that I could not deal with the constant depression of feeling like I was in a sinking ship with my mother and I couldn’t save either one of us.

I don’t know if I am expressing myself clearly enough or if you understand how I feel and can relate.

I’m afraid that I wasn’t much help to you and I hope I have not depressed you or frustrated you further. If I have, I apologize.
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Dollie1974 Feb 1, 2020
You are an Angel on Earth.
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My husband has parkinsons as well as other health problems. He has been in rehab since Nov. 4 and is moving to LTC Feb. 11. Before that I was his caregiver along with Home health Care. He fell numerous times, always backwards. He never broke anything, but was always bruised and sore. I am having a hard time dealing with the guilt I feel having to place him in a facility. I am in the spend down period of applying for Medicaid and feel so guilty spending the money we have saved, actually mostly from his earnings. It is so hard to think of him never coming home again, but everyone tells me I have to think of my own health and I am doing the right thing. So, Samlil, I know how you feel, but there comes a time when you have to make a choice—your life or his. After all, if something happens to you, what happens to him? It has been nice to go and visit him and not gave to worry about helping him to the bathroom or making sure he gets his meds. Start looking into options for his care.
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97yroldmom Feb 1, 2020
Cardell, just hoping you are being protected as the community spouse. Have you gotten advice from a certified elder attorney? You don’t have to be left impoverished in order for your husband to be in care.
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I think at this point your only choices are to get a lift or move him to a facility. I guess you could also choose to care for him bed bound but I personally wouldn't want that for either of you.
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An 81 y.o. with Parkinson's was able to manage his mobility with very little assistance, even as it progressed. Check with his doctor about light massage on his legs, feet, and ankles just prior to getting up.

One minute, he was mobile scooting his walker (with a seat) down the street to cash a check at the convenience store. The next minute, we would get a call to come help him, as he had 'froze up', and needed to be wheel chaired home.

For the bathroom, when he was not okay to get up himself, the caregiver would be standing by to assist. This amazing elder with a will to live would get on all fours and very slowly, crawl to the bathroom. (so give him time, do not rush him).

Other times, because they had smooth laminate floors, he would scoot or slide himself while sitting. Keep in mind, all this was accomplished from the floor!

Another way, he would roll onto a throw rug and be pulled by his wife or caregiver to the bathroom. He was then able to get himself onto the toilet from the floor. He was thin and wiry. Hard to imagine many without Parkinson's getting up off the floor at all! Each person is different, with different abilities. A person with Parkinson's will have good moments and very difficult moments.
This man kept changing his mattress to find something that worked for him. (So he would not fall out of bed, but could still get up by himself when able.)

When their mind freezes, at these times forward movement while standing is not possible. We discovered that to unfreeze his mind, a distraction of interest helped. Quite by accident, this was the discovery: 81 (I will call him) would routinely remove his hat at the top of the stairs and throw it inside, but one day he missed. He was standing there 'fozen', could not walk. When he missed his target for the hat, he could not tolerate it being out of place, so he 'unfroze' to get his hat. Sorry that this does not sound scientific. We later cut out feet from orange felt and placed them going up the stairs when he 'froze up'. Wow, this worked!

A book called "Parkinson's for Dummies" was very helpful.
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I read a while back that biking was good for Parkinson patients. Helped with their balance. I wonder if a stationary bike would work?

Caregivers can really hurt themselves trying to "hold" up dead weight. My daughter, RN, really hurt herself trying to get my Dad on a toilet. He started to fall over and she grabbed for him. She literally pulled her back muscles so bad that her spine was crooked. She went to a Chiropractor for a long time. I doubt if your Caregivers are insured unless from an agency. Would ur homeowners cover them?

You may need to make a hard decision. It sounds to me DH is passed an AL. They aren't equipped for this kind of care. So it means LTC.

By the way, there are special walker for those suffering from Parkinsons. A friend explained that they fall backwards and the walker is weighted in such a way to help with this. He had one for his wife.
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I have been seeing an eldercare attorney who has been guiding me through this process. Now I think I need therapy to get me through the guilt. I havent given up on eventually bringing him home, but at least for now he is well taken care of and I can have a relaxing stress free visit with him.
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I agree with Willie, a lift or facility. My mom has Parkinson's and can't walk. The caregivers refuse to transfer her without a lift, and she is 5'2 and 110 lbs. I am transferring her myself, trying to have her help as much as she can with leaning forward and trying to use her feet. Maybe your Hubby's doctor can prescribe physical therapy in home to evaluate your options?
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Di27813 Feb 1, 2020
With regard to transfers...my 87 yr old Mom is having more issues with this. The overnight visits to the bathroom are difficult on her and my Dad who has a bad back. We looked into the 'pure wick external catheter' for her for overnight. Its been great in the hospital. Cuts down on risk of falls and helps with keeping skin dry.
Start up cost is around $500 and monthly $250. Its relatively new and they hope it can be covered by insurance in the future.
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Move him to a facility. They are trained on how to do this, and then none of you will get hurt. Get an elder lawyer for yourself so you handle assets and Medicaid for both of you.
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The criteria for safe usage of a sit-to-stand is that a patient have at least 60 percent weight bearing ability, complete head and neck control, and ability to bend at the knees, hips and ankles. It doesn’t sound like your husband meets that criteria at this point. I have seen the tragic consequences from people thinking a sit-to-stand would work when the client actually needed a hoyer lift. One occurrence resulted in death to the client and significant injury to the caregiver. I’m not trying to scare you. Instead I’m trying to encourage you to see how potentially unsafe this situation is so you can make the appropriate decisions. I sincerely wish you and your DH well moving forward.
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I just saw your update samlil -
when my mom began to get pressure sores on her backside I was advised to get her a ROHO cushion for her wheelchair. The price tag was shocking, but after the initial sore was healed with bed rest she never experienced another one.
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