For those who care for someone with Parkinson's disease
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Topic Time for alternative care? Go to previous topic Go to next topic Go to higher level

By glassgardengate On 2009.07.08 14:59
How do you know when your parents need additional care? My dad (86) has Parkinsons and my mom (83) has significant trouble walking and standing, and has macular degeneration, so can't see all that well. So far, between them, they have being doing okay on their own, taking care of themselves mostly. But I know it gets harder every year. Should I let them tell me when they need help? I would love to be a caregiver for both of them; however, realistically, I have two children, am a single mom, and work full time. I don't know how I would be much help, other than what I do now, which is visit frequently, help with purchases they need, sign them up for homemaker services and help when they call for help with something. Having never dealt with this, I"m a little lost about what my role is/should be.


By lostdaughter On 2009.07.09 01:01
This is a difficult situation to be in & it's hard to advise someone else without being familiar with their situation firsthand. I was concerned about my mom's situation long before we found someone to stay with her while my sister & I work. I knew she was doing things I felt weren't safe & that she was driving some. What I didn't know was how much she was out & about. We finally felt forced to find an aide after she was hospitalized after a bad fall. She was still insistent she didn't need anyone with her but I had reached a point where I couldn't accomplish anything at work because I was constantly worrying about her, calling to remind her to take her meds or eat, etc.

This is going to sound very selfish but I'll say it anyway. If they can afford to pay someone to come in & help them or would be willing to consider assisted living, don't take on the responsibility of caring for them yourself. It sounds like your plate is overflowing already. Caring for one parent while working full time has really taken a toll on both my sister & me. One of us has to be with our mother all the time & it feels like I'm a prisoner in my own home. My life has to be coordinated around my sister's schedule & Mom's needs. Outside of working I barely have time to shop for groceries & mow the lawn. "Me" time is out of the question these days.

You're probably fortunate your parents haven't needed more help before now. My mom is only 69 & we've been taking care of her for over two years now.

Best of luck to you whatever you decide. I hope I don't sound uncaring. It's just that caregiving takes a great toll on the caregiver & it's usually way more time consuming than you expect it to be.

By susger8 On 2009.07.09 08:10
My experience is that the big sign that help is needed is finding piles of mail all over the house, with bills going unpaid. My dad kept insisting that he didn't need help, and I (with difficulty) ignored how dirty his house was and how much junk he was eating, but the issue with the mail and bills was what made me overrule his objections.


By WitsEnd On 2009.07.09 09:20
I think the fact that you're asking the question is probably the first indication.

My parents lived out of state and during the initial stage refused help. I offered to get a senior apartment near me, but they refused. I think they wanted to move in with me and me be their personal transportation everywhere--but that's just not doable when you work a lot of hours full time and especially when they go to the doctor every week about something. The place I found them was nice, the cost was reasonable, they had a bus to take them places, and they had activities and people their age to spend time with. It was near me so I could still help them when I wasn't working. It was short of assisted living since meals weren't provided--but they sent out for lunch every day to be brought in from a local Luby's and there was Meals on Wheels--and for a small extra there was a housekeeper. The rooms were handicap accessible--including the bathrooms which were very nice. Initially they said yes they would move to the apartments, but it was under duress. I told them I was sending them a Power of Attorney so I could get their their health insurance swapped over and get the move going and they balked. They didn't want anyone else handling their business. They were still driving. They wanted their independence. So they stayed where they were at.

I got a housekeeper for them and they complained repeatedly about it until we changed services and then they complained some more and finally they stopped using it altogether. The people who came out were "lazy""nosy", didn't do a good job--always something. They did get Meals on Wheels. They also had a free bus that would pick them up and take them to their appointments but they didn't like the bus and complained about it repeatedly too and about its being 10 minutes late for their doctor's appointment. I made a number of trips back to deal with various medical issues for over a year and just gave up on anything more at that time. My aunt was living nearby in the same apartment complex and although she complained all the time she and my parents did for each other. Then mom had her stroke and was paralyzed. At that point it was "you have to come get them and deal with this and do it now" and it was a major crisis. Mom signed an "X" on her Power of Attorney in ICU because she was paralyzed and could no longer write her name.

I bought a condo for them near me, had the bathroom remodeled to make it handicap friendly and hired sitters and went and got them and moved them in the condo--no small feat given mom was paralyzed and it was at best an 8 hour road trip. I thought this would give dad more independence, provide an adequate level of care for mom--keep mom, dad and their dog together which they wanted. We had hospice that was helping and we had home health care, a visiting physician.

The condo simply didn't work. The sitters didn't show up half the time--or if they did they were late or didn't do anything or in one case the woman wasn't good to mom. Dad had Parkinson's, and it was about this time that the sundowning and dementia started showing itself. He wasn't going to be able to be by himself even 5 minutes now. Money was also going out the window like water because sitters don't come cheap.

So after a few months I found a personal care home near me and moved them there. The place had a visiting physician, home medical could come and do basic wound care mom needed with her legs due to the poor circulation, etc. They let them be in the same room together and keep their dog. We still had visiting physician and home health care and hospice as well. It was cheaper than a nursing home and took care of both bedridden cases and folks like dad who needed some supervision but were more independent. From the time Mom had her stroke until she died the following May (2006) she wasn't out of the hospital more than 6 weeks at a stretch. It was a constant crisis (at one point both mom and dad were in the hospital at the same time.) Dad just died this February.

If my parents hadn't been so stubborn and would have worked with me, this wouldn't have nearly been so hard on me. They wanted to be able to keep driving and keep their independence. I can't blame them for that. At the same time though they refused to see the time was coming when they weren't going to be able to drive and it would be better to go ahead and work something out and get a routine set up before a major crisis--especially since I lived out of state. They refused though. In the end though everything did get taken care of. You find strength hidden in places you didn't know you had it when something like this happens.

To make it easiest on you, my advice is for you to come up with a short term plan and a long term plan. The short term is for while they are still reasonably independent--and the long term plan is when they will need full nursing home care. I would contact the department of aging, United Way and other resources in your community and get educated on options. If they will cooperate and you can afford it, I would see if some type of assisted living or senior apartments will work. Assisted living is expensive--we couldn't afford that. The senior apartments though were perfect--just a little bit higher than a regular apartment. Some assisted living facilities have varying levels of services ranging from the fairly independent senior to the senior with full dementia. This means you can use the same facility for all stages. You'll need to go visit the facilities, check references and it will take time to do this. It's best if you can do this while you have the time though vs. doing it when there's a crisis.

Good luck and God bless.

By lostdaughter On 2009.07.09 12:14
My experience has been the same as WitsEnd's. My mom is fighting to keep her life status quo while I want to make plans before the next crisis strikes. Every time my sister & I think we have the situation under control for the time being something else happens & we back up a few steps. In the meantime, Mom wants to stay in control of her future & insists she "plans" to get better, etc.

The advice to have both short term & long term plans is an excellent idea. I know all people want to maintain their independence as long as possible but it seems the elderly don't always take a realistic approach.

One thing I've learned from this experience is that I need to try to set up my own plans so my son doesn't have to deal with that. I also pray daily that I will have the wisdom to know when the time comes I can no live independently.

Please keep us posted on your situation.

By glassgardengate On 2009.07.12 13:32
Thanks so much for all the advice. I love the short term/long term plan idea!!!! Having a short term plan that they like should make talking about long term things a little easier. I'll let you know how it goes. I'm glad I found this site.

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