For those who care for someone with Parkinson's disease
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Hi I am new but learned to ask any delicate question safely on this forum. There are many topics dealing with PD that are not for the faint of heart nor do the doctor's want to discuss them or do they have answers. I read hire caregivers, buy new furniture, buy new towels, clothes etc. Does everyone have all of the extra money to do that? Health insurance covers some things but copay's for medications, Dr. visits, therapy add up. Then to come up with money needed for everything not covered is impossible. Even working 2 jobs. I am told there must be some agency that helps? Not if you still own your house and work. I am told then just stop paying everything, default and you can get help. Really? As a bill paying on time, never late or skipped a payment person my brain won't let me do that. Not really looking for specific suggestions, but wondering if any one else is in a tight spot$? |
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I was a single guy when mom was diagnosed nearly 10 years ago, so I moved back home knowing dad couldn't deal with this disease alone (he's rated 100% permanently disabled through the VA largely due to PTSD). I'm a teacher, but with my years of experience and education, I make pretty good money now. During the 2015-2016 school year, mom had severe problems due first to Lyrica withdrawal, and then a series of other dominoes fell related to that which made everything worse. We split the cost of a caregiver three ways, and someone came in 4 hours a day during the school week. The whole situation scared me regarding finances. She eventually got better, but it took over a year. I had been working 8 years before her diagnosis, so had some money saved. Right now I feel secure no matter what happens, but in 2015-16 I was scared. Dad, who is prone to catastrophic thinking anyway, wanted to sell the house and put mom in a nursing home at the first bump in the road. I told him we were not doing that--my feeling was that her problems were due to withdrawals and medication changes, not a permanent change in her Parkinson's. It turned out I was right, but it took a very long time for the evidence of her improvement. Now all the money I would have spent on my own house, family, etc, is in investments, minus all the extra expenses on caregiving, co-pays, etc. So I pretty much gave up my life to be sure mom and dad were secure in their old age, and if I'm smart enough, to ensure my own security. Of course, that could all change down the road. But right now I feel ok financially...except for all the sacrifice it took to achieve it. |
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Meow, Love that name, btw! PD is expensive. Most people recommend seeing an estate planning attorney as early as possible so that you can try to plan. The problem is that PD is very unpredictable and different for everyone, so plans sometimes don't always work so well....but it might make you feel better if you met with someone experienced in this area for some advice. Having said that, I will also say that one thing in particular that I was unprepared for were the unexpected costs of my husband breaking or ruining things that we needed and had to be replaced. There are a lot! I hate to think of all of the items we have had to throw away because my husband has put it somewhere no one would expect and it has gone bad (milk in the mud room), or pooped or peed on it so many times and the kids and I just can't stand the smell any more (and don't tell me you can get it out because I tried everything and repeated urine soakings take their toll), or broken it (shirts and shorts he has ripped or cut off because "they weren't working" and he couldn't wait five minutes for me to get there to help him, washcloths he used as toilet paper, dishes/glasses, binoculars (three pair!), and on and on). I don't let him have anything electronic or even mechanical anymore because he inevitably breaks it (usually cracking it open to see why it isn't working, which it was, until he busted it open, sigh). It is surreal walking into our home as we only have his lift chair and one sad solitary wooden rocking chair (no upholstery) in our entire living room-everything else was so urinated on I had to pay someone to haul it away, piece by piece. As an item gets so ruined I have to throw it away, I am replacing it with only wooden items, if I even replace it, because wood can be truly and thoroughly cleaned. Recently my husband crawled up the carpeted stairs, which he is supposed to stay off the stairs but didn't, and he had feces smeared on his bottom, both legs, and his feet from a bathroom disaster he made in his bathroom. The carpet was horribly soiled and even though I cleaned it as well as I could, I could not get it all out and the stains remain like a crime scene. I've learned to put things away where he cannot get theme BEFORE they can be damaged and I get upset, such as a family heirloom. You might want to walk through your home and see which items you would be most upset about if they were broken or damaged, and put those items safely away. One silver lining about this is that with less stuff, my house is easier to clean, ha. Overriding all of this is the fact that the PWP cannot help it. My husband took care of things so they lasted forever, and was so organized and tidy before PD. This disease has turned him into a careless slob and he is powerless to stop it. I try to remember that when I open the cottage cheese container and find half-eaten tortilla chips stuck in it  |
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Meow, As I told you in another post, my husband is one of the "lucky ones", in that in over a decade with PD, he is highly functioning and requires mostly that I remind him of med times and watching over his well-being. That said, Lurking and Grey are right...PD is expensive. For example, my husband is starting to have trouble backing up while driving...just last week we had to replace a bumper on my car because he backed into a tree and didn't want to report it to our insurance...$1400! Yesterday, he backed over a curb, but no noticeable damage. Prior to his retirement, knowing he had PD, we did several things to protect our assets...We bought a second home to live in and rented out our first home. We used the rent to pay down the first home's mortgage and put the extra money in a savings account which we didn't use. We then went to our bank and spoke with a personal banker who helped us buy CDs and open a second savings account in just my name (for emergencies). We also have 401Ks and I have a 403B from my work in a non-profit. Just this year, we were eligible to start annuities, which we funneled back into our savings account. We have Medicare and an excellent Part B and Part D for meds, so we are well prepared. I guess what I am suggesting is that starting today, try to save, even if it's just a small amount from each check. It builds up quickly. We often sacrificed in order to save, but now i am glad we did. It is often tempting to dig into savings when you first start, but in the long run, it isn't a smart thing to do. As Lurking said, there will be many unexpected expenses. You cannot be expected to anticipate the future, BUT...if you can, plan to have a "cushion" set aside...I agree...get advice from a financial planner or someone at your bank...it is never too early to start. That said, there are and will be times when money is tight. Rely on family. Ask your Council on Aging for any free or low cost help. Don't be embarrassed to ask for help. Don't get yourself in a financial bind. Remember, you need to make sure YOU are able to live, too. Good luck to you. Know we all are or will be facing similar situations with PWP. We all do the best we can. Take any advice given here, but use what works for you. None of us faces exactly the same problems, but we all care. Jane |
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the cost of a nursing home would decimate us financially. My goal is to keep my husband out of one completely. His Social Security would go toward the nursing home.... and mine is too little to live on. my pension is tiny. Here is our solution: Move to whatever would work in terms of house layout, size, price, and availability of help nearby. A plus would be a way for me to earn money while with him. Right now, all is good. We want to move while he is still doing fine. No nursing home, please. |
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Meow, My Dad got long term care insurance decades ago (thank God) and that helps pay for home health aides. (Or until they cut us off) It only covers 8 hours a day though, so extra time (my commutes) is paid out of pocket. I have 3 jobs since I lost my FT job 9 years ago and I always worry about the future. I now do all the driving, bill-paying, taxes, etc. and the financial side scares me. We do have a good estate lawyer and have our wills in order, though. Please contact a local Office on the Aging or get a referral to an Elder Care lawyer. If you can't find anyone, you can ask the doctors or ask a kind reference librarian at a public library. They often have great ideas or suggestions. |