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Topic Anyone care for PD'r and have little kids at home? Go to previous topic Go to next topic Go to higher level

By overwhelmedinFL On 2011.02.28 15:35
I am caregiver for my mom...she is currently at an ALF so I am not TRULY a caregiver.. but she keeps me hopping. I also have two kids under 10, a career and a husband that has his own business.

We both work from home.

My mom has been asked to leave the ALF. They tell me she is too much work and needs a skilled facility. I toured a bunch this weekend and NO WAY DOES SHE SEEM READY FOR THAT!

I want to bring her home but when her IRA runs out to pay for caregivers (I need to continue my career) then where do we go... we are then on medicaid and without being a resident of a community somewhere already we will be forced to take whatever is availble in the least desireable faciliites.

If we move her now with money (our system is so messed up but I have to present her case like she is a commodity...but I digress) she will get into a community and once she runs out of money they will just make her a medicaid bed and let her stay. At least that is the way it has been explained to me time and time again from different administrators and from my friend who has been in the business for 25 years.

Has anyone taken this on??? to bring their parent home? I would need 24 hour care... husband is home 24/7 and works his tail off. He would have all of my mom's stuff going on while he is trying to work. My husband has been soo great during the last couple years while I change plans minute to minute, come home late, dissapear for hours to make sure mom is not lonely etc.. I dont' know if I can throw this into our family mix but she is MY MOMMA!

Why don't we have PD assisted homes in the states? My mom would be fine with a facility if there were younger people like her (72). She has they physical needs for a skilled facility but the emotional needs of an ALF or better yet an Independent Living.

Sorry for the long rant and ramble.. any thoughts from any of you are experienced would be great.

By LOHENGR1N On 2011.02.28 16:21
overwhelmed, If You go to the "home page" and click on "resources" then click on the American Parkinson's Disease Association, you will find a link to Their Young onset Center. While Your Mother isn't young this site is geared toward dealing with Parkinson's around young children. They might be able to put you in touch with different people in your area to aid with and ease your concerns. I hope this helps. Take care, best of luck and hang in there.

By overwhelmedinFL On 2011.02.28 19:21
Thanks LOHENGR1N, It never occured to me that my situation if she come here would not be much different than that of the spouse of a young onset pd'r. Except the fine line of living with in-laws in your home LOL

My kids are fine with grandma. I am overwhelmed at the thought of adding more on my plate. That is just how I am, stressed all the time. I don't think my mom would like it here. She thinks we will be out lunching and shopping and that could not be further from the truth.

Thanks again. I need to check those resources again as it seems there are more than last time I looked.

By lurkingforacure On 2011.03.01 20:17
My spouse has PD and we have little kids and it's incredibly hard. My mom and both my inlaws live in our town and ALL of them have issues. My FIL has lungs that are failing and we have been told to get ready for hospice for him. His wife, my MIL, just fell and broke her hip and is recovering from that. My mom has liver failure and every day is different, some days when her liver is working better she is fine and other days she is depressed, mentally cloudy, and feels horrible. The thought of any of these people living in our home, with all I have on my plate, makes me want to flee the Earth. There is no way I could handle it. None.

I have to add, I really do see how we become like children when we get old. My MIL was complaining to me how hard it was to caregive to her husband, my FIL....and they have a hired caregiver all day every day! I wanted to scream at her that she had NO CLUE what caregiving really was when she has daily hired help, but what's the use. She knows her son has PD but never, and I mean never, asks about it or him or how we are doing. She actually told me she was grateful to be in the hospital with a broken hip because it was giving her the rest she needed from the exhaustion of caring for her husband, she just wore herself to a nub taking care of him. Yea, right, with a paid caregiver in the house 12 hours a day every day. I nearly dropped the phone. We should all be "so exhausted".

I love my mom and know my husband loves his parents but there is no way, and I mean no way, I could handle any more than I have now. And we all know it will NOT get any easier as time goes on, only harder. I think to voluntarily take that on is asking for divorce, heart attack, and bankruptcy all in the same ball of wax. If you went to a financial planner and laid it out for him/her, I'm pretty sure of what the answer would be. And if you have young kids, you have to think of their needs, present and future, first. It's really tough.

By susger8 On 2011.03.02 09:07
Overwhelmed, I've heard this situation before about ALFs, and it's why I am not so enthusiastic about them. Once the resident gets to be a lot of work, they want to get rid of them.

You might be interested in this as a possibility. I found that there are small facilities that are alternatives to ALFs or nursing homes. One that I looked at for my dad had a maximum of 22 residents, who are mostly Alzheimer's patients but some have other conditions including Parkinson's. They have their own rooms but most of the time they are in the common rooms. They seem to keep residents longer than an ALF, up to the point where they really require skilled nursing, and in many cases the resident can stay until the end of life. They are less expensive than either ALFs or nursing homes. I ended up keeping Dad in his own home with a live-in health aide, but I loved this facility.

Here's a link -- this is a small chain apparently. It's in NJ but you might be able to find something similar where you live. Notice that it sounds as if it's only for Alzheimer's patients, but that's not actually the case.


By overwhelmedinFL On 2011.03.04 17:09
Thank you all so much for your input. I read the responses the other day but I was in a place near mom where I could not respond.

We told mom today about the upcoming move. We have since found out that there is a 12 person waiting list for the room type my mom has... so as we worried it seems a decision made about profitability. LOVELY.. They want highest rent and least amount of work.. so even offering full market value and bringing in an outside companion would not fly with them.

Mom took the news better than I thought but since she does not emote very much anymore it is hard to tell.

We have a few places in mind that we have narrowed down for her and will most likely try another ALF that is attached to a skilled nursing facility so that when the time comes she can "age in place" more or less.

In my attempts to find a facility for a PD group facility (kind of like Sue mentioned) I fall back to an article I read about a local man (boy maybe;) that just opened an ALF strictly for memory/Alz. He is the son of a local family that is in the hotel business.. He was expected to go into the hotel business like his brother but instead went to medical school. In one of his portions of school he decided that he didn't want to be an actualy practicing MD but take what he grew up in (real estate) with what he studied (medicine) and open his own ALF.

I am going to tour the facility and try to meet with this gentleman to see if he has considered making PD a speciality. I want him to meet my mom, and maybe attend the local PD group we go to. I have the desire for this type of facility but not the money. This person has the money. The dementia and cognitive issues with PD overlap a bit with ALz and I think since many patients would tend to be younger it might be a good fit.

So we will see... I hope PD research keeps progressing and I hope awareness progresses even faster.

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