For those who care for someone with Parkinson's disease
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Topic Daytime Care Go to previous topic Go to next topic Go to higher level

By mytngenes On 2013.02.11 16:45
This is a difficult thought to think, voice or much less write down, but it's one I need to explore. How do you know when it's time for round-the-clock monitoring/nursing home-type care during the caregiver/spouse's work day? And what does that look like for a 60 yr old male with Parkinson's and dementia?

It's very difficult to even begin to think of such, but I so feel like we are there. I feel that my hubby (dx'd 14yrs ago) is no longer able to be "home alone" due to restless wandering, anxiety, freezing gait, extreme rigidity and pain in upper back and dominate shoulder/arm. We've tried an Adult Day Care but he hates it. Due to his wandering he was placed in the dementia/Alzheimer's area with 15 80+ year olds who really get on his nerves, plus there's no place to lie down for a nap or when a "Parkinson's spell" hits. He does not like sitting around all day playing cards, etc... and having an 8hr a day sitter at home is too costly.

I appreciate your thoughts and ideas.

By Freespirit On 2013.02.12 11:32

Thank you for voicing your concerns. I can relate to them as my own situation is very similar to yours.

Have you looked into assisted living as a possibility? Also, hiring family to come in during the day may be a little more affordable, or friends instead of CNA's, etc

As far as the adult day care, have you tried speaking to them about providing your loved-one with the means of lying down when needed? I'm glad you brought this up because I have considered this as an option for my husband in the future, but there is NO WAY that he could be expected to stay up the entire time at this point in his disease.

By chroop67 On 2013.02.12 12:27
My mom was encouraged by a doctor to attend a day program but I told her that that was impossible due to the mobility issues. Also the fact that PD people cannot handle sustained activity. We were instead offered the option of her be an in-patient at a geriatric program at a local rehab hospital. She was there for 3 months and they did their best to help mom in every way. From meds to daily living programs. We all hoped that she would be assessed as needing some assistance but in the end her mental decline proved the winner and she had to move into to a long-term care facility. She was terrified but there comes a time when we just can't provide for all our loved ones needs while looking after ourselves too. She is in a wonderful center and although she talks a lot about the day she gets to leave, she is for the most part happy and I know she is safe and cared for.

By parkinit On 2013.02.12 18:13
I feel fortunate (most of the time) to be able to stay home with my spouse and care for him with additional caregiver help at night.

Honestly, I don't know how you caregivers do it who are still working. I so admire you.

By jcoff012 On 2013.02.12 18:55
In a past life (I have many!), I was the Activity Director in an Assisted Living. A few thoughts...first, no matter who tells you differently, AL's are very expensive..ours went from $2200-4600 a month. The cost is based on need. I would strongly suggest that if you take that route that you make sure the organization puts no lien or encumbrance on your home. Many do, but find one that allows you to manage your own finances. Check with your insurance, as AL's are more often than not, not covered under most policies...The nursing homes often are, but few policies allow for the luxury of AL.

Next, if you decide to consider an AL, just drop warning, to see for yourself what the daily routine is, view the activity calendar (must be displayed prominently), and speak to and observe the residents. Then, make an appointment for lunch. Try the food and ask about special needs ' diets. Ask for a tour...and ask a lot of questions...the employees are all trained to answer...

Just some pointers from one who was part of the system. Hugs, Jane

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