Saturday, April 27, 2013

Caring for the Parkinson's Patient

I have known and loved my husband for more than 35 years. When we met I had two sons ages 6 and 2. When we first moved in together the boys were 7 and 3. That was a long time ago. He is the only father these two boys ever knew. He helped me raise them. And they love him as much as I do. He has Parkinson's Disease and is in the end stage of this disease. It sucks! But life is what it is. And we deal with it the best way we can. And it is heart breaking!


As I have said in previous posts (here and here) about Parkinson's, it is a disease that occurs when your brain stops making dopamine. Dopamine is what is needed to help your body move. And it affects your mood. Parkinson's disease is progressive and there is no cure.

If you are the caregiver for a patient with Parkinson's you need to be prepared . Just like the Boy's Scouts! Be Prepared!. There is a lot of information out there that will explain to you what you are to expect as your loved one progresses through the stages. You will have to make a commitment not only to your Parkinson's patient, but to yourself that this is something you can do. And it takes a FULL commitment. Because it is a hard job.

You are going to have to assess your environment. It will be a good thing if you can do this far in advance just so that you are prepared. I did not do anything to prepare our home. Our house is a single story house on a cement slab so we have few steps to deal with. However there is one step into the garage and one step off the front porch. We also have what was called a 'sunken living room' and it has one step down into the room. Our doorways fit a standard size wheelchair. But it is a snug fit. We have a shower in one of the bathrooms and a tub in the other bathroom. The shower has a glass door entrance and a tiny door to enter into that bathroom. So far we are managing without removing the glass doors. However, I am sure that will happen in the future.

You need to be able to go to all appointments at the doctor with your loved one so that you are both hearing the same thing. If your Parkinson's patient is anything like my husband, he was in denial for the first few years and didn't always come home and tell me the 'exact' truth that the doctor was telling him. There were a lot of omissions.

Start now to assess the financial situation. In my husband's case, when he had his stroke in 2011, it was necessary for me to quit my full-time nursing job to stay home and take care of him. This was a BIG financial burden for us because we had simply not planned for this to happen when it did. Do that NOW. Also, make sure you have all your papers in order: Power of attorney, power of health care, do not resuscitate orders (if that is your choice) insurance papers. Almost all of our possessions are in both are names so that has not been a big problem for us. But if yours are not and your loved one becomes incapacitated before you are ready for that you are going to have big problems.

Take care of Yourself. This is the hardest one for me. I am a control freak. I want to be his caregiver all the time. And he wants me too. But if you are tired and run-down you cannot be the best caregiver. Take breaks if you can. Get someone to sit with your loved one while you go out to dinner, to the grocery store, to a movie. Whatever you need to do to get away. It is challenging to take care of someone 24 hours a day; 7 days a week. And that is what a Parkinson's patient needs.

Get help. I have finally done this one by signing him up with Hospice. Our doctor wrote the order for hospice and they are a big help. It is part of the Medicare benefit. It is free. And Hospice is wonderful. They will provide all of the supplies, medications, and moral support you need. You can ask them for anything.
I think the most important thing you need to do when giving full time care to a Parkinson's patient is to maintain your relationship. Whether it is your husband, your wife, father, or mother. As the disease progresses your roles may well change. I have become the strong, independent head of household. Not a postition I ever wanted. But it is what has happened. And keep laughing. You will find plenty to laugh about and maintaining a good sense of humor sometimes is all you can do in such a sad situation.

I understand there are many good support groups out there. So far I have not found it necessary to find one. That is just 'not me'. But if you are the type of person who needs that kind of support go find yourself a group. My support group comes in the form of my kids, my brothers, and my grandkids. We have some good friends that continue to offer moral support. But whatever you find, you need a lot of emotional support to care for the Parkinson's patient.

Parkinson's is a cruel and nasty disease. Be prepared!



2 comments:

  1. We had hospice for my Aunt who we cared for (she had dementia and then cancer)they really are wonderful.
    And as far as additional support i get what you mean about groups. On a personal note. When my son and daughter died in 2006 (in an accident) people suggested Bill and i to join various groups; wasn't us either! We did get counseling but it was in a private setting.

    ReplyDelete
    Replies
    1. We have to do what is best for us, don't we?

      Delete

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