Some background: my mom died of COVID in a rehab facility on April 30. My dad declined very suddenly after that. He was hospitalized after a fall and was diagnosed with Parkinson’s and dementia. We did not want to send him to rehab so we brought him home and hired a 24/7 home health aid. My sister also moved in so he has the help he needs. He keeps insisting that he can walk and tries to climb out of his hospital bed. Sometimes he gets very angry and forceful. Should we tell him that he has Parkinson’s? We know he will forget and that we will have to remind him often, but we are wondering if he would be more willing to stay in the hospital bed if he knew.
Wishing you the best of luck finding a solution to this dilemma.
Of course you don't tell him. Let him know the doctor said he has to stay in bed if that's the case, but otherwise you'll need to figure out a way to get him out of bed if he's capable of it.
Please don’t let him lie in bed, that will only lead to his demise.
He is probably depressed and disoriented after his wife's death but is unable to recognize or articulate the situation. Help him do whatever he can still do snd relate to him in the oresent moment.
Can he still walk at all? Maybe you could ask the doctor to request in-home care and do some physical therapy to help with walking or maintain whatever strength he currently has.
Just keep in mind that you can't really make a broken brain be 'more willing' based on detailed explanations. He can only be 'willing' to do things in the moments that he remembers what you said.
My mom also had Parkinson’s disease. Dementia was a part of it, but hers was not as apparent as other elderly folks I’ve worked with. Telling someone a diagnosis may or may not help them. If a person can’t remember something, it really is not helpful to keep reminding them of a disease. (My dad had prostate cancer that spread to the bone, and he also forgot his disease. I didn’t bring it up once I realized that he couldn’t remember that he had cancer. It really didn’t change anything to keep reminding him.)
I fully agree that physical and occupational therapy are the best thing that can happen to a person with Parkinson’s. Whenever my mom was doing PT, we saw a noticeable change in her. She was more alert, slept better at night, and actually showed more interest in things around her. As soon as the PT stopped, she would decline again. Medicare would only pay for a certain amount of PT, but I was always impressed by the help it brought. I even discussed with the therapist about continuing PT and us paying out of pocket. It never happened, as my dad didn’t think it was that necessary.
Falls are a huge issue for a Parkinson’s patient. They often fall backwards, flat on their backs, and not down into a heap. Walkers and wheelchairs do become a necessary part of their routine, whether they like it or not. My mom used a walker after a hip fracture and the doctor told her it was her new best friend! She may not have liked it at first, but she seemed happy to be up and mobile, and feeling safe as she walked. When she did start falling (backwards), we knew it was time to have more skilled care for her, and she used both the walker and the wheelchair for her own safety. Her care staff was very good about helping her remember to use one or the other. There were times when an alarm became necessary and one was placed either on her bed or on her recliner, depending on where she was reclining. It alerted the nursing staff that she was trying to stand or walk (by that time, she needed extra help and would fall without aid).
I hope your dad gets all the loving help he needs at this stage of his life. It sounds like he has some great children who are willing to be there for him. This is becoming more rare as families grow away and apart. He is blessed, even if he doesn’t fully realize it.
Prayers for all!
There is no reason to tell your Dad about his condition.
Let him try to do whatever he thinks he can do. If he wants to walk, have a walker for him to use. It will keep him healthier the more he can walk and do for himself. My Dad is 96 and I'm thankful he can still stand up and use the walker to take a few steps to his wheelchair. He is still able to tell you he has to go to the bathroom and he eats by himself tho he will ask what he is eating and what to do next. Of course he has to have 24 7 care. Just try to make him happy and as long as he feels love and safe, he will be happy. At this age, I let my Dad do what he wants even if he wants a snack every 2-3 hrs like a Baby.
His legs cannot hold his weight, so he cannot leave the hospital bed. It would take 3 people to get him from the bed to a wheelchair, so I'm afraid that is not going to happen. His appetite has declined but every once in awhile, he will ask for beer and we are happy to oblige him.
Marie
Although it may seem counterintuitive, a low bed or mattress and box spring on the floor can sometimes be easier for the LO, especially if they are already inclined to climb over the sides of a hospital bed in their desire to get somewhere else.
As far as “telling” anything to someone with dementia, my rule of thumb, through 3+ generations of family members with dementia, is to speak slowly, simply, and quietly about subjects that reflect love, security, safety, and comfort.
Telling or reminding him that he has Parkinson’s wouldn’t seem to me to be in my own comfort level as gauged by my criteria. I usually ask myself how I expect my listener to benefit from what I’m telling them before I say it. If something might add to the discomfort or confusion, I skip it.
Is someone in his bedroom all of his sleeping hours? Have you tried a motion monitor to be pinned to his pajamas?
Falls resulting from decreased personal safety awareness are very difficult/nearly impossible to avoid.
Have you tried in-home PT? Sometimes it’s more important as a tool to raise the spirits as to move the body.
I’m old, and I can’t think of anything I’ve ever done that was harder than dealing with the consequences of the problems of the aging. Good for you for looking for the best you can do to help your dad feel loved and appreciated.
I'm concerned that he didn't have the opportunity for rehab; this might make all the difference in his recovery. I don't wish to disparage your efforts, but I'm not convinced that either you or your sister, or both, can address recovery from a fall. Did he suffer any broken bones?
What kind of doctor D'x'ed dementia? At what stage? And how far advanced is the Parkinsons?
Personally I think the controlled and supervised post fall recovery is the best option if the individual is able to participate. I guess that's the question here - is he?
I commend you both for your willingness to provide care; that's really quite touching.
I do think a physical therapist and occupational therapist could offer insightful advice though. Your father's physician could script for this kind of in home therapy.
You have good instincts. If knowing that diagnosis will not improve your dad’s quality of life, there is no need to make things worse for him by telling him now and dropping yet another bomb. With support, he will stabilize over time. The shock from the loss of his life partner has probably pulled him down farther and he will bounce back - he needs lots of love, a new sense of purpose, a feeling that he is needed and wanted. It sounds like you all have created that environment for him.
When my Dad died, Mom experienced “broken heart syndrome” a real medical condition where she was experiencing severe new medical problems that could have ended her life. She stabilized over time.
Her primary recommended to take her to an eldercare psychiatrist. The doctor I chose was elderly himself. The mere act of discussing all the new life changes, fears, and loss with a new person in her general age category gave her tremendous relief and helped her bounce back faster.
Is it your intention to keep him in a hospital bed? Or are you saying his getting in and out without help is because he cannot remember? If the latter is true the diagnosis will mean nothing to him and you may as well forget it. Parkinson's is a complex and difficult condition that will effect every aspect of his life from mentation, to ability to eat, to ability to have any balance at all.
Is this a hospice situation now with palliative care, and you intend to address it at home. I think that right now discussing his disease is a moot point. I am all for honesty, but to scare someone who cannot in five more minutes understand what he is a afraid of isn't good.
What kind of home support do you all have in this?