Please help! My dad has Parkinson’s and Lewy dementia. Had a fall and was taken to hospital. He has gone downhill in the 2 weeks he has been admitted. Any advice?

As an RN, I suggest placing him into a nice skilled nursing facility - they have staff to care for him 24/7. Sell his home and use the funds to pay for his care. Visit him as often as you can. Engage a local lawyer to handle all legal affairs of your father - and to be available if your siblings cause problems.

Good Afternoon,

Have you consulted with a Geriatric Neuro-Psychologist? My mother has Lewy Body Dementia. Prior to her actual diagnosis it was a nightmare. Not every family is in a position to hold a "family meeting". Some of the blogs, newsletters, etc. where people show up with a casserole and give the caregiver a day off and hand you a $100 gift card for a day of beauty, usually these things only happen in the movies.

Once your loved one is hospitalized, they can't get any sleep, it's noisy, too many blood draws, the shift changes bringing along different faces and it confuses the elderly.

Check for a UTI and unless you plan on living with dad, Lewy Body affects the "executive functioning skills". Basically, they can't open anything, write a check, anything with more then 2-3 directives, sequencing. Their peripheral vision also goes which is a major issue. They may walk behind a car that is backing out as was the case with my mother in the early days' before she was initially diagnosed.

Teepa Snow an Occupational Therapist has a lot of YouTube videos. She is fabulous.

Lewy Body usually the gait is off when walking. Their balance is out of whack.
Occupational Therapy, Physical Therapy and Speech Therapy are a big help. Don't underestimate the power of these things. You don't want their body to atrophy by inactivity.

In other words should dad come home or wherever he goes, no CNN marathons and he sits all day in a recliner his weight will skyrocket.

You need to build your team--caregivers, Church people, Primary Care, Geriatrician Neuro-Psychologist, VNA--speech, physical and occupational therapies. But in all honesty, it's best if a family member or someone who knows him well can live with him. If not, other arrangements will have to be made.

With the right medication(s) you can reach a baseline where your dad could have some quality of life. But he's going to need help with everything. There are respite programs, but what about at night?

The Veteran's Aid & Assistance if your dad was a veteran could have some $$$ for you. It is NOT a given but worth checking out. Lots and lots of paperwork.

An UpWalker Lite was a tremendous help in getting my mother back on her feet.
Speaking of feet make sure your dad's shoes fit properly. When your loved one loses weight their feet shrink. Buy "good" quality shoes.

Get rid of area rugs, any step-in shoes, put railings around the toilet NOT the booster seat because you can't wipe yourself well. Have railings installed, a shower chair, nozzle and most of this can be purchased via a scrip from the primary care doc and delivered from a durable medical equipment company "in network" from health insurance.

Keep a schedule, NOT a lot of tv, since the tv is not good for Lewy Body. Call on the Church people to visit or join one and log on to the portal for all doctors since it's convenient and will keep you up-to-date on your dad's health.

Pay a visit to an Elder Attorney so that you have the authority to make decisions on behalf of your dad. You have to have the right paperwork in place even to discuss the dentist.

Most people just want to get home. Are you local, out-of-state, working full-time? What is your situation since that is going to depend upon a lot.

Check out ALL of your father's doctors online and find out if they have any disciplinary action. You can find out through your local Medical Board.

I could write a book on this. If you want to write back with any questions, I will be happy to help you. I will pray for you. I know it's hard and you have to think rationally and stay focused. You may not get your support from your siblings but you can build your own team.

Keep records of everything and receipts for everything. Make an appointment with an Elderly Attorney and line up your ducks soon.

I'm sorry you're going through this. There is also an online video from Lewy Body Ireland that may help you YouTube.

Amen...

Sammybucca123: As your father suffers from Parkinson's and LBD (Lewy Body Dementia), he requires placement in a managed care facility.

First thing I would do (I speak from experience) is to make sure that he is getting all of his medications and that he gets them on time. My husband was taken to the hospital and they did not give him his Parkinson's medication for 4 days. I'm sure you know what happens when PD sufferers don't get their medication. You say that your dad has a huge house which means he will not be eligible for Medicaid. You might want to consider the cost of care when making your decision.

You have to consider both your father's needs and wants, and also your own capabilities. Don't worry too much about what your siblings say, if they criticize any decision you make, and don't take their criticisms personally. It's easy to criticise, and difficult to actually take on the responsibilities. He's going to need a lot of care, and he may need more care as he ages. Do you know what his preferences are? Is he still able to discuss and make sound decisions about his own care? Is he able to afford 24/7 caregivers? Do you live close enough to him so that you'll be able to oversee his care and the caregivers? It's easiest if you go through an agency (they'll handle all of the necessary paperwork for payroll, withholding taxes, unemployment insurance, etc.). If you don't use an agency, it's best to have an accountant handle the payroll taxes, etc. You can't leave caregivers totally alone. They have to be supervised and guided, you would become their "manager." Don't give them access to credit cards. If they need spending money, use cash and ask for receipts. If you have "strangers" coming into his home, you should lock up all of the valuables and personal papers. Don't leave any letters or papers with financial information lying around. if you are his POA for financial matters, it's best at this point to take over his finances. Set up all accounts online and paperless, and have all bills sent to your address. If this is too much for you to handle, a memory care/skilled nursing facility may be the best option. There will be professional staff there to handle his day-to-day needs, a 24/7 nurse, do the housekeeping, laundry, feed him, bathe him, arrange activities, etc. If you decide on a facility, try to find one near you so that you can visit often and oversee his care. He'll need help finding a facility, downsizing, and moving to the facility. You'll probably be the one who does all of the legwork to make this happen. He may still need someone to take him to doctor appointments, while he is in an assisted living facility. Some facilities have doctors, dentists, barbers, etc. that come to the facility. If you cannot do this, you can pay caregivers to take him to appointments. After he moves, it may be best to sell the house and use the proceeds for his care, if needed. If you are doing all of this, be sure to keep receipts, so that you can prove to your siblings that you are spending his money on his behalf. You can discuss with them if you should be paid for handling all of this. This is a big moment of transition for your father and the family. All the best to your father and you, and the family.

If your siblings are not involved in your Dad's care, disregard their ranting about whatever decision you make.

If you find a good Care facility placement, this will be easier on you physically and emotionally. If you are considering 24/7 care in your father's home, you will need to monitor closely enough to know he is being well taken care of.

Hi Sammy, here's what happened with my dad, who had Parkinson's and had a bad time of it in the hospital. He absolutely was nearly hallucinatory in the hospital and came home with care and he was better.....but that was for his first or second hospitalization. After what turned out to be his final hospitalization, he was sent to rehab, which really didn't work out well. He was released at my behest to be cared for at home, since he wasn't improving and his 20 days had just about run out, anyway. We had a homecare provider scheduled to come in, but he ended up back in the hospital, then hospice. Long story, short: Your dad cannot be home alone. If he goes home, it's with 24-hour caregivers. However, can it be assured that there will be persons with him 24/7? And, honestly, even with 24/7 care, it will come to pass (sooner or later) that his condition will require quite a high level of care. It may be that a care home is the way for him, though, I know it's hard to have to decide to place your father in care. Don't worry about brother and sister, if they are going to come down on you no matter what you choose, you already know that you have to ignore anything they may have to say. It's hard, Sammy, I know, but the Parkinson's adds a level of difficulty that is really too much for just one person to handle. Take care and know that no matter what, you have made the right choice.

Sammy, I'm responding to your reply to me below. They can't discharge him to an unsafe environment. He needs to go to a nursing home. Why isn't the Dr recommending nursing home placement?

Sammy, oh my gosh you are still dealing with the caregiver issues. Back in 2020 you asked for our suggestions as it was becoming overwhelming, so sorry to hear now you didn't get any help or placed your Dad in a care facility. agingcare.com/questions/i-feel-like-i-am-having-a-mental-breakdown-due-to-looking-after-my-father-with-parkinsons-any-advice-463763.htm

Agree Parkinson's can make everything harder & more complicated 😥

Here is my simple view...

Crises happened.
Brought a change of health.
Changes will need to be made.

My longer re-phrase;
Dad fell. Now in hospital.
Not stable to go home.
Not stable for rehab.
Not able to self-manage aides for 24/7 care at home.
So only option left is to stay in acute care until he his stable to move elsewhere.
His medical team hopefully includes a social worker to help with discharge planning. A functional & cognitive assessment may be required.
This may indicate supported care / nursing home is required, temporarily (or permanent). If so, suitable locations are found.
If Dad can choose for himself, he can choose.
If not, POA can choose. If no POA, hospital may need to apply for emergency guardianship - the OP can take this on (if wishes to).

A trial at home (with arranged supports) can be done if suitable eg: someone is responsible to arrange a care agency, the care agency have staff available, behavioural or medical issues are able to be managed at home.

I would certainly factor in the estranged relatives with substance issues. Would they come sniffing around Dad's home? If high risk of elder abuse - facility would be safer.

If any relatives have popped up to offer their advice - take care. Those who offer support, have Dad's best interest at heart, keep in contact. Those that guilt or have their own agendas, thank, then block.

** Do not engage with any abusive or manipulative people **

Let us know how things progress if it helps you.

I would just like to make a comment very limited in scope. I was just on a webinar today for Parkinson's patients and the issue of hospitalization came up. It is VERY important for Parkinson's patients to have their Parkinson's medications given ON TIME. EVERY TIME and if this does not happen the patient can have a lot of problems with both motor symptoms (like walking) and non-motor symptoms, like mood issues. It is well known to neurologists that their patients have trouble getting their meds properly when hospitalized for other acute issues, like after a fall. The hospital staff don't always consult with the neurologists who are dealing with a chronic condition when they have an acute issue. of concern to the hospital. It might be a good idea to check on the medications for his Parkinson's and Lewy Body Dementia to see that they are being given according to the neurologist's guidance. I'm sure this won't solve everything but it couldn't hurt to check on this aspect of his care. Parkinson's patients have worse outcomes than other non-Parkinsons patients when hospitalized so all you can do to make sure that the meds are correct is helpful.

You DO need to have legal representation for dad to be able to make decisions for him.

Brother and sister just need to be ignored--I know that's hard, but necessary.

Dad needs to be where he can be cared for, appropriately, 24/7.

I find that most people who post here already really know the answer to their questions, they just need supportive words.

Yes, families SHOULD come together in the best concerns for elderly family members. It works out, sometimes. Often, though, it's more like what you're experiencing.

And do NOT let yourself have one moment of 'guilt'. That's for people who are doing wrong, which you are not.

First, you go see a lawyer. He is no longer competent and needs a legally appointed, court ordered Guardian. You let the court decide on placement so you are not the bad guy.

Care home. Since you already know your siblings are going to freak out whatever you do, think about how you’d deal with taking care of dad at the same time you’re feuding with them. You can’t. Having a seriously ill person in your home is hell even with good caregivers, especially since you have your own limitations. Let him go to a place where dedicated professionals can look after him. Your angry siblings - ignore as much as possible. You don’t have to justify anything to them.

Welcome to the site! This may not be welcome news, but the general experience of carers is that Parkinsons and Lewy are a really difficult combination for the elder, carer and anyone else involved. “Going downhill rapidly” may be a blessing in disguise. You “want to make the best decision for my dad”, but please make it in the expectation that things may get much worse.

You can get more information from the site by clicking on Care Topics at the top of the screen, then L for Lewy and P for Parkinsons. You will find experts’ articles, and past posts from people about their experience. It should help you to work out what to do. Best wishes, Margaret

Your dad needs to go to a skilled nursing facility. The Parkinson's will get worse and he will need 24/7 supervision. Have you met with the hospital's case manager and social worker yet? They likely will recommend the same thing. You will have to figure out the finances as if he has money, it will have to go towards his care at the NH. If he has quite a bit of money, I would recommend getting an elder care attorney on board to advise. Hopefully the siblings aren't living in his house, if they are you are going to have to deal with that. The house may have to be sold to pay for his care.

If I were in your shoes, I would have Dad transferred to a nice Long term care facility. Rehab will probably be recommended, I would send him. Will give u more time to get things set up. Ask that he be evaluated for 24/7 care.

Lewy Body is one of the worst Dementias, IMO, because of the aggressiveness. Your Dad will need meds for the aggression. I would not want to be the one arranging aides and having them not show up for shift. If you hire privately, legally ur required to take out payroll deductions and make sure the proper agency gets the money. Agencies are expensive. I would just use what money Dad has for his care and apply for Medicaid when funds are almost gone. You cannot care for Dad alone. You will enjoy him more with him in care. Then you just visit.

Sammy
Sorry for your situation. Do you have authority to place dad? Is he agreeable? Is he able to weigh in?
Either choice will work.
It is generally thought that it is less expensive to choose a care home. Sometimes hard to find 24/7 careers and manage the care and keep dad (or siblings) from dismissing them. A lot easier to have dad safe and sound and you be able to visit rather than try to run the whole show.
What does his care team recommend?
With siblings as you describe, I believe I would seek the help of an attorney to help you chart the path with least conflict. As you said, either way they will not be happy so find the way you will most likely be able to manage and protect you and dad. Don’t take opinions, go find the reality of what you are able to do w/o sibs approval. Each persons circumstances are different.
I assume from “mum” you are in UK. We have posters from your area who are professional caregivers. Hopefully they will see your post and weigh in.