Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Thursday, November 30, 2006

Care Giving Ain't What It Used to Be

It's only been less than 4 years since we were care givers for my FIL, keeping him at home with the help of Hospice, after he had been in the hospital. He was in a very nice Assisted Living Home before then, because he resented us, probably for taking him out of his home, and we couldn't handle his violent outbursts. They never had any problems with him at the Assisted Living. It was an emotionally draining job, but one we have never regretted doing.

Here I am, just 4 years older, and taking care of Daddy has worn me slap out, thanks to PD. My dear hubby has really had to take up the slack and get much more involved in taking care of my Daddy than he would have had to, if I had not developed Parkinson's Disease. As an example, a couple of days ago my legs stayed wobbly all day long, even after I took my PD meds, and I didn't trust myself to help Daddy walk, so DH had to do it.

First off, the emotional stress of finding him Friday started me off "in the hole" so to speak, and my medicines never have been able to catch up.

Also, I've not been able to get a decent night's sleep at Daddy's. The same recliner that I slept in for several years when I stayed with Mama is no longer that comfortable to me, and that's the only place there is for me to sleep. So, I end up going to sleep early, waking up somewhere around midnight, and spending the rest of the night on the computer. Luckily, I've been dozing quite a bit on the computer during the rest of the night hours. But that's still a poor second to a good night's sleep.

So we decided the best thing to do was to try to get Home Health or Hospice here to give us some help. That's why we took Daddy to the doctor's Monday. Well, Dr. M. followed through, just as I expected him to. The Hospice nurse came today to admit Daddy, and I filled out all kinds of paperwork. They will be sending someone twice a week to help him bathe, a nurse will come by once or twice a week, and they will provide all Depends type products and most of his medicines, too. They're sending a wheelchair Friday, so we can take back the one we borrowed.

Daddy understands that I need the help, so he's being very agreeable to all this. She offered to send a hospital bed, but Daddy's not ready for that yet, so she said just let her know when he needed it. It's not a whole lot of help, but any is better than none, and with his age and all, he's bound to need more and more care from now on. This way, all the routines are in place, and he'll be used to the people coming and going and being in and out of the house. It should certainly make things easier for DH and me, knowing that he's being seen by a nurse each week.

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4 Comments:

  • At 11/30/2006 10:27 AM , Blogger Janey Loree said...

    Hi Rosemary, our family experience with hospice has been all good, but I agree it is not what it used to be! The people that run and work for the hospices need to truly be called to help. If it is just a job to them, then the care is lacking right at the start. You are in our prayers.

     
  • At 11/30/2006 11:17 AM , Blogger Dirty Butter said...

    Hi Janey! LOL I wasn't talking about the Hospice care giving not being as good, but MINE! We've never used this Hospice, so I'm hoping they are as good as the one we are used to. I fear I've had way too much experience with hospices.

     
  • At 11/30/2006 1:50 PM , Blogger Marion said...

    DB, I 'm glad you've got some help. I am so thankful that we have care givers who come in three times a day for my mom...some of whom she's gotten quite close to. Bathing and dressing her is a huge help.

    I do think about you sleeping in that recliner and wish there was another place for you to sleep. That sounds very difficult, especially for you with PD. And lack of sleep makes everything more difficult.

    Please take care!

     
  • At 11/30/2006 2:03 PM , Blogger Dirty Butter said...

    I sleep in a recliner at home, Marion, but this one is designed so much differently that my body is complaining. I'll adjust to it, I'm sure. You're certainly right, though. I need more sleep.

     

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