Husband with advanced Parkinson's can barely stand/walk so difficult to get into bathroom etc. Caregivers are struggling - any tips/tricks?

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.

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.

Take him in wheelchair to the foot of the bed. Put an over toilet shower chair next to wheelchair. Try to synchronise, you giving him a lift under his arm whilee he attempts to stand. He may be able to hold on the bed end whilst you shift wheelchair way and replace with the shower chair. Pull his pants down befors sitting him. Wheel shower chair over toilet.
I did this for my mother by myself for a very long time.
Eventually had to hire a lift I could set ip and transfer her on my own. Was very difficult. Ended up with torn tendon in my shoulder.
There is always another way. Make use of incontinence wear as a last resort.
If presence of pressure sores. I smothered with Sudocrem every time she was toileted. It helped a lot.

HI Everyone - really appreciate your responses.  He has had the gamut of PT, OT, speech therapy for years.  Of course, Medicare will only pay for so many visits.  He is permanently catheterized, on a feeding tube at night and has his meds delivered via a pump 16 hours a day.  It has been 8 years of rapid decline.  Moved into a new house 3 years ago where he has his own large room on the 1st floor, installed an elevator and a large handicapped bathroom.  Lots of investment.  I did just get a sit to stand lift which is helpful.  He does wear depends but has butt sores so really try not to have him sit in soiled depends any length of time as it makes the sores worse.

I do have an appointment at a care facility next week.  I would love for him to be out of the house for many reasons however, caregivers and medical providers are always surprised that his never has a UTI and to date no colds, flu, pneumonia etc .  Guessing our house and his current care keep him healthier. 

I am very active and in good shape but constantly lifting him and holding him up is becoming too much.  Keep in mind, I work fulltime so really just responsible for nights and weekends when I am alone.   Just hard to think about having someone in my house 24/7 if a care facility doesn't work out.  Such a difficult disease and feel so sorry for him but getting to the end of my ability to live with this.

From what I am reading, you simply have no choice but to place him into a facility before something horrible happens and it will happen - I assure you. The time is now. You cannot wait.

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.

My 'client' when I worked Elder Care also had Parkinson's. It truly was frightening how sometimes she'd just 'freeze' and she'd obviously be thinking "I can walk, what's going on??' I took her to PT and one day, getting ready to get her into the car, her PT said "I need to show you some maneuvers so YOU don't wind up getting hurt" I cannot really remember the exact things--but essentially, you do not want to be holding the full weight of your LO in your arms and back. This PT customized the moves for my client and it helped so much. (I did, actually, ruin my own back during those years of such hard physical labor!).

Partly, my client was a very impatient woman who wanted to be on the go all day long, and you know with Parkinson's --the meds interact with so many foods. She inevitably would mix something sugary in with one of her meds and that made the 'freezing' MUCH worse.

She did wind up in an ALF, b/c the care she required in home was burning up everybody in the family & this caregiver!

You can take out the removable armrest on the wheelchair and move him sideways to and from seated positions. That will save some effort and risk. Use pull-up diapers and cut away the sides so they easily drop off when he's moved to the toilet.

Perhaps it is time to consider placing him in a home, he appears to need more care than you can provide. He will be cared for 24/7 and you can visit him as you wish to.

If needs a nursing home and you can not afford self pay, look into Medicaid, time to make a plan to handle the inevitable.

I wish you the very best...don't forget to take care of you too!

Have you contacted Hospice?
They can help with equipment that will make it much easier. A Sit to Stand or Hoyer Lift would make things so much easier. And you and caregivers will be trained how to use the equipment.

My husband also had Parkinson’s. If you want to keep him home, you will need to hire a care agency to have daily help. Also consider getting Hospice involved. They have something called Palliative care. Hospice provides nursing, people to help your husband wash and pastoral care. They’re very compassionate.

I got a baby monitor so I could hear my husband at night, a hospital bed and a commode since we only had an upstairs bathroom. He lived downstairs so he could continue to be part of what was going on.

A physical therapist can teach you how to help your husband transfer from bed to chair. You will need a wheel chair at some point and probably a patient lift. It’s very hard, you have my sympathy.

Medicare and health insurance paid for Hospice. Hospice provided the hospital bed, commode, wheel chair and patient lift.

Place him in a facility where trained medical professionals know how to handle this. You're going to get injured.

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.

Have him wear pull-ups so you can throw everything out when it goes in there...if it don’t hold in place good enough, then diapers...& caregivers don’t have to rush to bathroom...& it’s all disposable...maybe get commode to put near bed. Don’t risk getting injured by physically holding him up.
hugs 🤗

Hi Samlil. I’ve been researching sit to stand lifts and reading many many reviews. I am struggling with same standing issues with my Mom. I have found one that I am going to try. It has two pieces to swing under back side when needing to sit. One review was very helpful as it explained how to lift one piece/side to wash and then lift the otherafter toilet if. Many lifts like this on the market. Some over $2,000. One I found was $550. Amazon sells it Lumex LF1600. Check it out. I hope this helps you. Good luck.

Get a judo belt and tie it tightly around his middle so caregivers have something to grab on to. If caregivers straddle his legs when lifting him, they can keep him upright more easily. I'm sure you're probably using pants with easy, stretchy waistbands like Hagar's, sweat pants, etc. You can also buy some that have Velcro on the sides. Seems like you have pretty much everything else you need... same as a long term facility.

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.

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.

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.

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.

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?

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.