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.
Start up cost is around $500 and monthly $250. Its relatively new and they hope it can be covered by insurance in the future.
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.
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.
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.
hugs 🤗
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.
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.
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!
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!
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.
I wish you all the best in finding a suitable facility. Don’t be disheartened if the first couple of facilities aren’t a good fit. Keep looking and with persistence you will find a good match.
My mom has Parkinson’s so I get it. I totally get it.
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.
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.