For those who care for someone with Parkinson's disease
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By pegk3548 On 2009.08.21 22:35
My husband has had PD for over 18 years. He has had home health for over 2 years after being in the hospital in Feb. of 2007. He is in the advanced stage of PD. He is on coumadin and has to have blood test anywhere from once a week to once a month depending on what his pro time is. He also has to have his white blood count checked once a month or he can not get his clozapine refilled. Well about a month ago he was discharged from home health because they said medicare would not pay for it any longer because he did not have any skilled needs. Can someone please help me out and tell what this means. I can't get anyone to explain this to me. All they say is takeing blood is not a skilled need. It is so hard for me to get him to the doctor because I never know if he will be able to function at all on any given day. Sometime he can walk (although it is very wobbly), sometime he falls, and sometime when he gets up to walk he passes out. We have a wheel chair but I still have to get him to the car.

I have not posted for a long time although I have been reading the posts. I have just been haveing a hard time for the past few months dealing with everything. It just seems like this has been going on for so long. I hope someone can help. Thanks.

By annwood On 2009.08.21 23:06
Hi, Peg
Welcome back! Sorry things are not going well. As a registered nurse I know skilled needs to mean a procedure that requires lisensure or certification. They evidently feel that he should be able to get the blood draws away from the home. If he was receiving any other type of care they might consider it (OT, PT). There are also lab services that will come to the home if that is the only need. Have you considered getting Hospice involved? They can take care of the blood draws, provide any special equipment and all PD meds.

I feel for you - my husband had PD for 18 yrs and the last 3 yrs were terrible. I didn't know how long I could continue. You believe your life is over but it isn't. I hope you will stay with us.

By bandido1 On 2009.08.22 19:02
Peg: Patient Bob here: I am on a home health care program and in addition to PD have heart problems,and am on coumadin. A registered nurse checks my blood every six weeks at home( PTNR). I would suggest rechecking what has been told you. Good luck! Bob C

By pegk3548 On 2009.08.22 22:15
How would I find the lab services that come to the house? What would I look under to find them. I tried looking in the phone book but could not find anything like that. Also thanks for your kind words.

By annwood On 2009.08.22 22:41
Not real sure but I would try phlebotomist, home health services or laboratory services for starters. You can also ask your physician.

By atir On 2009.08.22 23:06
Hi, I am new to this forum. I have just gone through much of what I am reading with my husband. I cannot discuss anything with him and make him understand. He wants to buy a second car and I keep fighting him about that. He isn't able to go out by himself. I take him and either use a wheelchair or walker. I have had the problem with sex also and it about drove me crazy. Since he is incontinent, I just don't have any desire for it. Also, he hasn't been able to perform for many years. There are times when I get so frustrated and wish I could get out, but I know that isn't going to happen. I have had guilt feelings and I get very tired of being his caregiver. There are times when I think he could be doing more for himself but just wants me to do it for him.
It seems like we fight so much anymore, I don't feel like it is much of a marriage. I realize it is the Parkinson's but that doesn't make me like it any more because of that.
I'm happy to hear that others are experiencing the same things I am. I will keep Praying for patience.

By Emma On 2009.08.23 07:17
I have two messages, one for pegk3548 and one for atir.

First, pegk. Do you have a senior services center or council on aging in your area? Where I live we have both and they have caseworkers who can refer you to services. There fees are on a sliding scale based on your income. Just a thought.

Atir, welcome to the board. I know that just being a member of this forum has been very comforting to me this past week. I feel like I finally have friends who truly understand what I am going through. My other friends and some family try but there is no way you can ever explain this to someone who isn't living it everyday. As far as the sex thing, my husband can't perform either but that doesn't stop him. That whole issue is probably the hardest one for me to deal with because there is so much emotion attached to it, including guilt.

Everything that you're feeling, I feel. Sometimes I dream about what life would be like if I didn't have to deal with all of this. I'm jealous when my friends talk about simple things, like their husband fixing a broken tile, or going canoeing. So many things that I/we used to do are lost to us now and I grieve for those things. I have a new granddaughter and everytime I see her she has changed, learned something new. It's as if someone is sticking plugs in her everyday and she lights up with every new plug. With my husband, everyday a plug is pulled and the light goes out. Somedays it's so dark that I can't see him anymore. This is a terrible disease.

annwood has recently reminded me that arguing is useless, you will never win. I know that is true but sometimes I can't help it. Especially because there are days when he seems almost like he used to be and I think maybe he'll hear me this time.

I hope that just the understanding and compassion of people on this board will be a help and comfort to you.

By atir On 2009.08.23 23:10
Emma, I appreciate your comments. You are right! Even my children don't seem to understand. My oldest son told me I am acting like a child. I am supposed to "just deal with it".
My sisters ridicule my husband and think he is just acting. They told me they wouldn't put up with it. So you see, I really don't have anyone to share with.
Some days I feel like I am going crazy.
Now today was a more normal day. I went for a 1/2 hr walk by myself and left him watching TV.
I can't always do that. Then this afternoon I took him out to eat and we went shopping at Wal-mart. He loves to ride the scooters they have in the store. It does help just to get out of the house.
We are 70 years old and he was diagnosed with PD about 20 years ago. He is on so much medication that he started to have Hallucinations. I cut back one dose of his meds and that seemed to help. Sometimes I don't even think the Doctors are a lot of help.
Thanks for listening.

By susger8 On 2009.08.24 08:22
Atir, it's common for older people, and those who have had PD for a long time, to reach a stage where the PD meds don't really help the symptoms much any more, but they tend to cause hallucinations. I had to change neurologists (found a movement disorder specialist) in order to find a doctor who understood this and was willing to change my dad's medications. He's been entirely discontinued from Comtan and Requip, now taking only Sinemet, with no worsening of his tremors or other PD symptoms. I was hoping that his mental status might improve, but that didn't happen. At least he has fewer pills to swallow, and fewer prescriptions to pay for.


By pegk3548 On 2009.08.30 14:05
Just wanted to give everyone an update. My husband was put on hospice Friday. I had to take him to the dr. Thursday because he had been passing out and was very dizzy all the time. Well it was a struggle but some how I got him there. He looked pretty bad because he had fallen Monday and his forhead and nose were all scraped up. While we were with the dr. he could hardly sit in his chair he keep leaning forward. I asked the dr. if he thought he might be ready for hospice and he immediatly said yes. He said we can help you with some referals. Well I just assumed I would have to follow up on this myself. Boy was I suprised when the hospice people called me the next day and said the dr. had faxxed a request for eval. for my husband. Over the phone they did not sound like they were sure they could help but said they would be glad to come out and see. When the nurse came she said we did not think your husband was in this bad of shape just by looking at the paper work. The nurse called her supervisor who then came over and admitted him right away. They told my husband and myself we are going to get you some help right away. This is a releaf but also bittersweet.
Annwood thank you for your suggestion.

By annwood On 2009.08.30 15:57
I am so pleased that this is working out for you. There are many misconceptions about Hospice because initially it was reserved for dying patients only. Now it has a much broader range. I hope that you find them to be as kind and helpful as I did. Keep us updated.

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