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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.

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Imho, there is no real benefit for telling him of these diagnoses since more than likely they will not register. Prayers sent.
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Reply to Llamalover47
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Does he take medicine for Parkinson's which can help his energy and activity level for a few hours at a time? When the medicine wears off, the patient is quite weak again, but for parts of the day to assist with activities talk to the doctor about medications.
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Reply to RedVanAnnie
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I don't think telling him ANYTHING is going to make a difference, much as it doesn't with my mother who has moderate dementia and all sorts of other health issues. She, however, lives in a Memory Care ALF and a whole team of people get to help her with whatever she needs help with, and there's A LOT she seems to 'need' 24/7. Your father getting angry & forceful is not likely to have a good outcome, either, what with these diseases being progressive and getting worse. At the very least, you need to call his physician to let him or her know about dad's behavior and aggression, along with his insistence on getting out of bed. Medication can likely be prescribed to calm him down in general, which is a much better scenario than having him fall out of bed & you needing to call 911 to get him back up into bed. Cuz that's what's happening next. My mother has fallen about 50x in the ALF and it's all because of her having a VERY very hard head. Nothing gets through to her, either. N O T H I N G. If it did, she would not have fallen ONCE, never mind 50x.

Wishing you the best of luck finding a solution to this dilemma.
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Reply to lealonnie1
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I found a product years ago which I used for my Dad. It clips to the patient’s clothing and to the wall. When he tries to get up, the line detaches from the thing on the wall and your recording will play. I said “Dad, sit down!” He was confused by it but did sit down and alerted his caregivers he was trying to get up. I wish I could tell you where I got it. Maybe someone else knows.
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Reply to KathleenQ
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You can tell him anything and he will (l) deny it; (2) become angry; (3) ignore it and keep causing problems. Why on earth if he is so difficult do you have him home with you impacting your life. Put him into a facility where he can be cared for and you can live in peace. He will only get worse. Don't put up with it.
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MarieAR Sep 15, 2020
We have him at home because my mom dies from COVID while in a rehab facility in April. We looked into facilities and then his family doctor placed him in hospice care. At this point we're just trying to keep him comfortable and our of a facility.
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He and you all are suffering this loss. You have done "super" bringing him home. The getting out of bed...the caregiver deals with that and he may need something to sleep. You have access to counseling for both of you. This decline is obviously connected to loss of his wife. Behavior of any kind comes from him, and you and the caregiver are dealing with that. Yes, talk to him about his diagnoses. The major med for parkinson will cause cognative decline. Talk to his Dr. about the affects of parkinson meds. Yes, he will forget, just deal in a loving way his behavior. Reminding him about memory does not help. The Dr. can give a mild anxiety med. His wanting to get out of bed has been a lifetime of practice and that will never stop. When it becomes a danger to him...anxiety med. may help. The railing may not be high enough, but anxiety med may reduce his ability that comes from his mind.
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Reply to DKelso34
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If he's going to forget, how do you assume he'll remember not to get out of bed?

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.
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Reply to MJ1929
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My Dad has Parkinson’s and his legs get weak, like your Dad’s. He has had PT several times over the years. Physical Therapy will help him tremendously. They will not only strengthen his legs, they will show him how to move around safely, using a walker, getting in and out of bed, etc.

Please don’t let him lie in bed, that will only lead to his demise.
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Reply to BeckyT
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Aww, God love him. He wants to remain independent and active, not sit in a bed all day. I don't blame him. I would encourage activity, even if just bed exercises. Can he walk? My mom has parkinson's/dementia and I walk with her with gate belt and 4-wheel walker every day. Has anyone assessed his abilities with mobility assistance such as walker/rollator? Does he need a wheelchair to get out and about? Not sure why he is to remain in bed all the time. Not sure informing him of diagnosis' will help. If he is cognizant for a time, maybe approach the subject and tell him. Dementia is not usually 24/7 but can be roller coaster of good days and bad. Hugs to you and family for caring for him at home. That is best, imo. Bring in the help he needs if more required. Take care.
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Reply to renoir
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No point in trying to "explain" his condition to him. It will not register. Help him do whatever he is able to do in as safe a manner as possible.. If he wants to get up or walk, have his helpers support him as needed and do some PT exercises. Je may regain some strength or he may not, but you can commend him on his exercise session and then have him "rest" until another session or activity.

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.
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Reply to RedVanAnnie
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"if he would be more willing to stay...in bed if he knew". If he knew and could remember, yes he would stay in bed. However with the memory problems he may know this minute and not the next. It's not going to hurt to repeatedly tell him that his fall injured him and he must stay in bed to heal. You will be wasting a lot of energy to explain what Parkinson's is each time he forgets what you told him the last time. When you tell him he has Parkinson's, the next question will be what is that, etc. If you say he had a fall and injured himself, that is pretty easy for anyone to understand and much easier to repeat several times a day.

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.
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Reply to my2cents
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jacobsonbob Sep 15, 2020
Parkinson's Disease is common enough that might know what it is (probably having been aware of it years ago, so it's in his long-term memory), but remembering that he has it, or even accepting that he has it, are entirely different matters.
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I am very sorry for your loss. These COVID-19 days are so difficult for families with aging loved ones (particularly those in Assisted Living, Nursing care, hospitals, etc.) We have not been able to visit my in-laws for many months. I have no idea when we will be allowed to see them face-to-face again. Hopefully, by Thanksgiving, we can at least visit in small groups.

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!
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Reply to busymom
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First of all,, sorry to hear thst your mom died and I'm so happy to hear your Dad gets to stay with you instead of having to go into a Senior Home.
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.
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MarieAR Sep 15, 2020
Bev,
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
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You can try explaining the Parkinson's disease to him. Dementia is part of this disease process. Please make sure he has a walker, good fitting shoes, and no rugs to trip him up. You might consider a bed or chair "alarm" (see medical equipment websites and stores) that lets you know when somebody tries to get up without assistance. Unfortunately, he is more prone to falls and will probably have more in his future.
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Reply to Taarna
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I would check into some in home rehab for your Dad. My Mom has Parkinson's with dementia and walks around her NH non-stop. Even standing still talking to me for a few minutes through a glass door, it would appear she's "marching." Always moving. Telling him his diagnosis isn't going to make much difference in my opinion. Best wishes to you all.
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Reply to Litlebit67
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Was a hospital bed recommended by the specialists who were seeing him during the hospital stay?

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.
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Reply to AnnReid
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My mom was diagnosed last year at 86 with Lewy Body dementia. We sat with her at the doctors..She was so relieved to get a diagnosis explaining why she felt she was going crazy. She had felt no one believed her. Then she cried....she grieved the diagnosis for a few weeks and has done the best she can with the changes...I feel knowing helped her prepare. She is in an assisted memory care facility the past 5 months and when she is struggling with Lewy Body {it has up and down bad dementia and Parkinsons like symptoms} she will say “remember I have that disease”.
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Reply to Sadinroanokeva
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Is his Parkinson's such that it prohibits him from walking?  Even with assistive devices?   

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.
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Reply to GardenArtist
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Be positive. Be kind. This all has been life’s worst nightmare for him. It has been a very hard year for all of you. I am so sorry for your loss and the tumultuous changes.

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.
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Reply to ACaringDaughter
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I can't really know what is happening here. You say you didn't want him in rehab. Is that because of covid-19? Because rehab to someone/for someone who can cooperate, can make a Parkinson's sufferer so much more mobile and safe esp. in terms of balance and correct equipment.
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?
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