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Topic Really Overwhelmed with 64yr old Father Go to previous topic Go to next topic Go to higher level

By dadsdaughter On 2009.08.02 22:34
Hi all,
I am new to this forum and really need help. I am beyond at my wits end. My father who is only 64 was diagnosed with pd-Lewy Body August 08. Since then, he has significantly declined health wise. My brother and I moved him into an assisting living facility two months ago because we could no longer help him (we are both in our early 30's). When he moved in he could still walk with a walker but not for very long periods. He could not roll over in the bed or reposition himself. He has been diagnosed with major depressive disorder and anxiety since he was 19 yrs old. Of course, both these disorders have been worse since the diagnoses of PD.

Currently he is using a wheelchair and is no longer walking. He cannot even sit up by himself anymore. You have to prop him up in a wheel chair, bed, etc. His tremors are now on both sides of his body, he is drooling, and his nose constantly runs. He is still eating and swallowing fine.

Currently, his brain is functioning fairly normal-ie: no hallucinations, , etc. He is very anxious and someday's he cannot eat because of this.

Yesterday we bought him a brand new bed to help him get in and out of the bed and it is adjustable so maybe he can be more comfy.

The last week has been Hell. He has called the police from the assisting living 20x in one night and 3 the following night. He says it is because he cannot get comfy and the caretakers are not helping him. The police told him if he calls again, they will take him to the ER and place him on a mental health hold. Well, he called again but thankfully they just took him to the ER to get him some pain medication since he was complaining of severe leg pain. The nurses at the home say that he calls them every 5-10 mins and they cannot help him that much since they have a lot of other residence to help ( makes sense).

The neurologist is not doing anything to help. He says there is nothing he can do and this is what happens with parkinsons. The psychiatrist is at a loss of what medications to give him because the neurologist obviously says that he cannot take certain ones because of the pd.

Currently dad is on about 12 different medications. He is only taking Sinement for PD. The rest is for bladder control, blood pressure, anxiety and depression.

I don't even know what I am asking except for help. What should I do? What can I do? Is this really Parkinsons...not being able to move, period?? Yesterday he could not even feed himself because he kept following over in the wheelchair, not because his hand was shaking too much.

Any suggestions with the Neurologist?? Anyone have a good neurologist in South bay Area (SF-CA)? He currently has Kaiser but medical kicks in Sept 1, 2009 so we are getting him out of Kaiser.

His other problem is that he hates the place he is living. He says the people are way to old their and no one will talk to him. My dad is very young BUT physically he is the same age as the other residents so I have NO clue what to do. Plus, he withdraws and does not really talk to anyone. It is hard even talking to us these feels like he is in his own world/head most of the time. It feels like we ask him questions and he ignores us or says "ok" to anything and everything. So I really do not know what is really going on with him or inside of him to know how to help or make things "better" or easier.

Is it time for a nursing home? Hospice? 24/7 live in care-giver?

By annwood On 2009.08.03 00:23
Welcome to our forum. You can say or ask anything here.

In reading your post I think perhaps what you need the most is a place to ventilate - you have found it.

We don't give any medical advice here other than our own experiences. It does seem that most of your father's problems are related to his PD. The falling over, inability to walk or turn in bed, and the bladder problems all can be a part of this disease.

The fact that he has been diagnosed with Lewy Body Disease means that his symptoms will probably progress much more rapidly and there will be much more mental decline. I would recommend that and your brother read all you can about this disease. Knowledge is power. There is everything you need on the internet just Google it. You can also look through old posting on this site.

Nursing homes, assisted living, etc always have issues but they do the best they can. Sounds to me as if your dad is used to both of you being available and is now having to adjust to a staff with many patients. I would highly recommend that his telephone be taken away if this behavior continues. How could he get 20 calls made without someone noticing?

As for the ER - keep him away from there and all hospitalizations whenever possible. Very few physicians are familiar with PD and the medications. Many of us here have had dreadful experiences because of this.

Understand that you dad's mental status will decline and he may develop dementia. Realize that you are wasting your time if you attempt to get his cooperations. Make decisions for him and stick to them. There will be much manipulation on his part. There is no way you could care for him so do not feel guilty.

As for the neurologist - I would contact USF and ask for the neurology dept. Then ask for the movement disorder specialist - this is who your father needs and he/she should be coordinating all of his meds. I know that they have good people there.

I am sorry that you and your brother are going through all of this. It is a terrible disease. Your father i blessed to have both of you.

By susger8 On 2009.08.03 08:17
I would say it's probably too soon for hospice. Nursing homes don't usually have enough staff to give the kind of 1-to-1 care your father seems to need right now. For my own father, a live-in caregiver was a better solution than assisted living. My dad is not sociable and would surely have stayed in his apartment and continued to eat poorly, groom himself inadequately, and skip his meds. I have heard of people in assisted living having a live-in aide, if they have a 2-bedroom unit. That's expensive, of course.

A change in physical environment is very disorienting to a person with PD (well, to many people regardless), and often contributes to confusion or strange behaviour. That might improve over time, or it might not.

I found it incredibly difficult to see my father, always an extremely competent man, lose the ability to do simple things, and lose his mental function. It's an awful disease.


By caregivermary On 2009.08.03 11:02

My husb was DX at the Parkinson's Institute in Sunnyvale, Ca. When we moved to northern Nevada we continued to see a movement disorder specialist at the Institute. This is an excellent option for you to explore. They may still take patients now who are not covered by medicare or insurance they generally accept.(Kaiser) You will need to explain how difficult the situation is and how important for you father to be seen asap.

There are many meds to help relieve the distress your father is having but before that he needs a thorough evaluation. He will definitely get that at the Parkinson's Institute. You can check their website by searching for Parkison's Institute in Sunnyvalle, Ca.

Take care and if you have additional questions, please let us know.

By bandido1 On 2009.08.03 14:32
dadsdaughter: welcome to the forum! I am one of several patients who will respond with the patient's point of view. I agree with the advice given about seeing a movement disorder specialist. I don't believe you're going to learn much more about parkinson's than you apparently already know. Your father has classic symptoms compounded by other illnesses.

I am 77 years old and am pretty much incapacitated. My spouse is a cancer survivor with limited physical abilities. Consequently, we use a local care facility in an at home environment. A nurse's aide visits me daily to shower and dress me. A registered nurse visits at least weekly and is on call. When my spouse needs to be absent for any extended period, such as out of town visits, we hire hourly house sitters capable of monitoring my condition. Incidentally, I wear a cell phone around my neck 24/7.

If your father will be eligible for Medicare shortly, I believe this to be your best course of action. Nursing homes, veterans facilities, assisted living, etc. do not provide adequate care for parkinson's patients.

Good luck, and as my buddy Al would say--hang in there! Bob C

By WitsEnd On 2009.08.03 15:30
Welcome to the forum. I've a couple of observatons.

First, you said "assisted living". Assisted living may mean different things to different people. To me it means a separate apartment where there is a community dining hall and your laundry gets done--but not constant care. It sounds like your dad's condition is beyond what can be provided in this kind of environment--plus it is expensive. Someone who can't turn themselves over or sit up need some type of nursing or aid attention on a regular basis.

That leaves you with hiring sitters, getting home health care, etc. like Bob has. If you do this, you can move him into a regular handi-cap friendly apartment.

Nursing home is an option. I am not sure about hospice--but to ease your mind--make the phone call. Hospice will be happy to talk to you and if you don't need them now, it is always a good idea to know your options.

From your post it is hard to tell if the behavior is dementia or something else. I would recommend talking to your primary internist or family doctor and getting a referral to a different neurologist for a second opinion. 12 different medications could be causing side effects and interactions that could be causing problems. One type of Parkinson's meds may not work. The neurologist needs to be open to trying different med combinations to see if something could improve.

If it were my dad, I would see if the doctor would admit him to a rehabilitation facility temporary to see if something could be done to improve him sitting up, etc. with a physical therapist. While there they can tweak the meds and see if that helps. The social worker at the rehab place may be able to help with some other area facilities in your area.

Good luck and hang in there.

By lbellomy On 2009.08.03 23:40
Here is a website that you can learn more about Lewy Body Disease. You can go to the home page and find more information.

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