Helping Those Who Care for Parkinson's Patients
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I've noticed that the subject of Lewy Body comes up relatively often. I found this looking up LB & PD; The main disease associated with the presence of Lewy bodies is Parkinson's disease. Lewy bodies are also present in neurons in dementia with Lewy bodies and the Lewy body variant of Alzheimer's disease, as well as Hallervorden-Spatz syndrome. In fact not that many years ago, before advances in imaging, the finding of lewy body's post-mortem was viewed as conformation that the deceased did in fact have Parkinson's Disease. On the subject of dementia, Yes too many Parkinsonians Develop dementia! However, that being said while the fear of losing a loved one back into the recesses of the mind is great and terrifying, We must not jump to thinking confusion is Dementia. The medicines used to treat Parkinson's are powerful drugs which in themselves can cause confusion, hallucinations and mental lapses, these can last for days, months or as long as we are on the medicine. As caregivers (with all the worries and responsibility involved) I can see it may be easier to question, Oh no now dementia is starting? I'm not criticizing, It's human nature to do so, to want to be so to speak armed or forewarned. (But does that really make a difference? does it change the outcome?) I am saying try to slow down and take a wait and see attitude if at all possible. I know you can say well, you're not a caregiver so you can't understand our burden and point of view. This is true, however I am a person with Parkinson's Disease. So I can give a view from the inside. We're terrified also, we know we're in the grips of a degenerative, incurable disease. With every medicine we take we have no idea how it will affect us. If We complain, we're told give it a few weeks to do it's job!?! Easy for the Doc's to say they aren't experiencing it! So here we are inside looking out, trapped! The med's are making it hard for us to remember anything even our name, how to tie a shoe or in the case of freezing how to pick up our foot to step over a curb! Now our lifelines to the world we once lived in are rushing us off to see if we know who's president, what the date is etc. We're having trouble working the dam remote control to the television let alone worrying about the date. Talk about stress, the med's are putting us through hell and we're dragging our caregivers right along with us! To have the added worry that it's not the drugs but you believe we're demented too? If so, what's to be done? Can you cure it? It will come along probably before the disease is done with us but from the view in here why rush it? I'm getting long winded here please forgive me. Last issue for now I promise! Unfortunately most Doctors are limited in time by either insurance company's or medicare/caid or the volume of patients to explain the disease, med's and side affects, progression, secondary features etc. to each individual. I believe that is what a place like this forum is for. Yes it is a support group, yes it is a place to vent, it is also a place to console, counsel and learn. We can take the time to help with a side affect, step in progression, trouble had with a drug, our experiences. I know that is why Bob, myself and other P.der's post, to try to help. As We all know Parkinson's Disease is a cunning cruel sneak thief. It progresses differently it seems in each case, so to worry about potential problems is defeating as the one's worried about might not come to pass but others may develop. The Neurologists hear concerns, look at their notes (pt is taking this and that = said side effect) the response, I don't think it's anything to worry about right now. Communication is paramount to helping each other, if a new drug is introduced take a moment to look it up online (a suggestion, try the F.D.A. site, sites from the manufacturer may down play side effects.....they are trying to sell these drugs after all) see if the new Med's may be causing the problem so recently surfaced. Post questions here We'll help all we can! I've rambled on too long now, so Take care, best wishes and hang in there! |
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Al, This is a great post, and thanks for reminding us what it's like INSIDE the disease. Your words reminded me of an issue that I experienced when working at a care facility. Some of the caregivers felt that it was in the patients best interests to make them aware of every little thing that was going on. But, particularly in patients who may be experiencing some confusion or dementia, is it really in the best interests of their quality of life to make them aware of things that they can't change, especially in light of the fact that they have plenty of other challenges to deal with on a daily basis? I'm thinking especially of one woman who had dementia who was not aware that her husband had passed away, and asked frequently when he would be there. Every day the caregivers told her he'd died, and she had to go through that grief process all over again. Is that informational, or just cruel? She was happy and did quite well for the rest of the time. It has to be the most frightening thing that I can imagine to know that there's something wrong with your brain that you can treat (somewhat) but cannot really do anything about, and that it will inevitably get worse. As a care partner (not yet a careGIVER), I can say that because we love you, we go through it with you. Sometimes we're anxious and our wheels just spin because we love you and this is a boo-boo that we can't just put a band-aid on and kiss away, and it drives us crazy not to be able to help more. I think some of the hyper-diagnostics and over-analyzation of each new little symptom and ups/downs with new, exciting and promising new treatments (cures?!?! oh, we can only pray!) are our way of dealing with the frustration of needing something, some way, of being proactive in fighting this unseen and cruel foe. I tell my DH that if the PD was another woman, I would have called her out and beat her down by now! But we can't... And so in the meantime, we listen and talk and rail and cry and hope for something that will make a change... something that we can get our hands on and our minds around. And we know that sometimes we annoy the heck out of you all by our hovering and our analysis. But sometimes it's hard to help ourselves. Fear is the worst burden to bear, on both sides of this fence. No, it doesn't change anything. You're right. In all seriousness, maybe blissful ignorance has it's place. Maybe it's best to just say "Well, yesterday was a bad day, but this is a good moment, and I'm going to enjoy it." Al, I'm rambling too this morning because I've been trying for awhile to walk in both of our shoes, to see things from both sides of the fence. I'm coming to think that some of my 'got to be prepared for everything at all times' attitude might be better served with a dose of my DH's 'relax and enjoy this time because we don't know how long we'll have it'. As always, thank you so much for sharing the other side of the fence and your great insights. You help me so much in understanding how to help (or not help) my spouse with sensitivity and with love. |
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FROM SHAAKY - PERSON W/ PD This forum, even when we don't all agree does offer some invaluable input. From the inside, yes it's ugly to have PD but reading this post along with the many posts in response to Donna from North Carolina I felt compelled to share something and see what emerges.... So many of the caregivers , especially those caring for someone for a long time, have shared openly their frustrations, problems and hardships. To them, a big thank you for helping me begin to learn how the caregiver mind works, where the pot holes might be and hopefully what I can avoid in the future to help my wife remain sane thru the process. Now I am looking for advice and commentary from those who have been here- done that so to speak. My wife and I began to discuss how best to prepare financially for caring for me about six months ago. I still work, make reasonable money and should be able to continue for 5 more years , maybe more, who knows .... We own our home but like most, times are tough and we are often waiting the next paycheck. We drive older cars, don't blow a lot of money, just normal middle class people. We began to think that in order to secure our future we should sell our home and use the equity to purchase a mobile home which would be paid for , then pay off any other debt. We can do this and come out debt free except for everyday living expenses i.e. light bill, phone, food, etc. We would then be in a position to bank a lot of my pay until such time as I can't work and the wife would be better able to pay the everyday expenses when I become disabled and care for our family as the bread winner. The problem is this...I am not at a point right now where have to stop working and I have been resisting this drastic measure for any number of reasons. I am more like MyLove's DH - Can't we just chill and enjoy this as much as possible while we still can (because we all know it won't last)... I feel guilty that because of my illness my wife will have to go thru this hell. Frustrated that what we worked so hard to get we should now sacrifice in the name of future planning. Worried that our kids will resent the reality of this move , worried that I will be viewed as a failure for not giving my family better AND at the same time worried that if we don't do this it will cause an even greater hardship for my wife and family. Some could say I am being materialistic, or maybe I just hate to admit defeat to this disease. I'm not trying to put on airs or be materialistic or make anyone feel bad, I just hate the idea of my kids not having a real home. I want to provide better for them and for my wife. There are other factors involved but the above is the heart of the matter. Do you suck it up and make tough decisions to get out in front of the financial burden ? Is it " alarmist" thinking to make that decision this soon ? Should we worry about when it gets here or would we be foolish to wait when we could really put ourselves on a course of financial freedom now ? Does removing the stress of bills bills bills offset the sacrifice ? Go ahead, ask me questions, offer advice, shoot holes in one side or the other ...I am looking for wisdom... Shaaky |
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| With the current economy, we're all in the same boat. My PWP and I try not to over plan. We know he has PD and that it has and will continue to progress. But since PD is different for everyone, we really don't know what is ahead. Our quality is better when we focus on the present. People without a chronic illness don't know what tomorrow will bring and neither do we. We try to be prudent with finances but we also try to be mindful of the present moment. |
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Actually, I have been wanting to reply to this thread before Shaaky's response, but now I MUST reply. If there is one thing that Hurricane Katrina taught those of us in New Orleans, it's that you never know what the future holds, and you could lose EVERYTHING literally overnight. And the future doesn't care about you, so why should you care about IT so much? I agree with Lynn: try not to overplan so much. There is a line to be drawn between anticipating the likely future and planning to die. I'm not sure where the line must be drawn, but I do know this: you're not dead until you're dead, and the present is FAR more important than the future. And speaking as a daughter of a father with Parkinson's, I have to say, you've given your children life itself, and you don't owe them any more than that. (This is radically different from my sister's view -- she maintains that parents "owe" their children a "legacy;" furthermore, although she's a nurse and lives only two blocks away, she never lifts a finger to help out with Dad. Go figure. But I digress.) I think most parents don't realize how strong their kids can be, and character only grows from having your strength tested. Shaaky says, "I feel guilty that because of my illness my wife will have to go thru this hell." Guilt has also been mentioned many times before on this forum, and I have to tell you all, I just don't understand it. Guilt is the most USELESS feeling in the world. I never feel guilty about any of this, nor do I expect Dad to ever feel guilty. It's not as if any of us DID anything to DESERVE this, so why feel guilty? Whether it's the caregiver or -givee, stop this "guilt" business. As far as I'm concerned, if anyone wants to feel guilty about anything, it's not learning and not wanting to learn, and that's something that doesn't apply to ANYBODY on this forum. To try to answer Shaaky's practical questions: I blew up at Dad earlier tonight (although not as badly as I have before -- I am learning!) over what he wants to do with this house we're currently in. It is beyond rehabilitation, according to everybody, expert and non-expert -- except Dad -- and really should be demolished after we move into my condominium. But Dad won't have any of it. He wants to refinance (wants to take out a 30-year mortgage at the age of 78!) and fix it up. I am trying to convince him that it is to no avail -- that it would be better to have the house demolished, and to put whatever money he would have thrown into this money pit into savings or investments. I'm not worried that anybody will lend him any money; even in a good economy, nobody would lend money to someone his age and with his bad credit. I am convinced that his stubbornness in not giving it up is that he is desperately attempting to hold on to some notion that he can still be a good provider. Being a provider to his family is the only reason he's ever had for living. The fact that he simply can't be is deadlier to him than any physical disease. I think this is a peculiarly male phenomenon: the notion that you are of no value if you can't give people material things. This may be where you need to learn a lesson, Shaaky: the fact that your presence alone is enough to justify your being here. You are all that is needed. You don't need to be a provider of money or things in order to have value. Your life is justification all by itself. If this sounds a little hard to swallow, I'm not surprised. Most men have a hard time thinking that way. In the end, I think the most important thing to remember is this: money and possessions (even houses) come and go, but you only get one of each of your loved ones, and each one is priceless and irreplaceable. Just ask all of those loved ones of the more than 1,500 people in New Orleans who died because of Katrina (I actually know a few). Houses are rebuilt and replaced. People are not. Take care of them while they're here, and you'll have no regrets. Take care of the here and now. Remember the proverb, "there is a reason why it's called the present -- it's because it's a gift." |
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Al/Lohengrin Thanks for the wise words and the reminders. It will help me be an advocate for my husband, and to look for medication-CAUSED symptoms when something new arises. We are new to this game and your help is invaluable (and from Bob and Shaky and Peter). As far as planning for future? We are trying not to be too frivolous or too stingy with our money. We also realize the need to live life today, while we can. He can't take his experiences with him, but he can smile today, and while he is still able, we will go and do as much as we can. |
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SHAAKY, You ave posed a doozie of a question. It can't be simply answered. I'll probably just end up leaving more questions without an answer. But you asked for some input. Please don't blame yourself and feel guilty, you didn't go stand inline at the Parkinson's store and buy some disease right. You and Your Wife realize this. Unfortunately stuff happens. We're all here because We all hate to and won't willingly admit to defeat to this disease. However as time and disease progress some concessions are made, by your post you know this. Should you sell your house and buy a mobile home? By what you've typed right now I'd ask are you ready to do that? First and by no means am I trying to be philosophical, the building doesn't make a home. What about the upkeep of the house, lawn and gardens (if any)? Right now it seems no problem, in the future? Children grow up and leave home, that's our job as parents to equip them the best we can so they can go and succeed! A mobile home is easier to maintain, usually the yard is less demanding also. But if you sell before you can be at peace with it, you'll end up hating the mobile home because you'll resent the fact of not having the house. Conversely if you keep the house and can't maintain it you'll resent the fact it's dragging you under trying to keep it up. Just because We may end up in a wheelchair it doesn't mean we buy one and set it in the corner to look at till we do. Now to quote You " worried that I will be viewed as a failure for not giving my family better AND at the same time worried that if we don't do this it will cause an even greater hardship for my wife and family." Who will view you as a failure? When you and your wife decide it's time to make the move (it will be a joint decision right?) who in their right mind would criticize it? Moving to make it easier on yourself and your wife. Children adapt, they may adapt screaming and kicking but they adapt. Include them in discussions, but I'd advise to make sure they know the ultimate say is your wife and you. Finally, if there is any silver lining with Parkinson's Disease, it's what we do with it. We have the chance to show friends and family, what love really is. That love stays and cares not only in good times but when life is the pits! That having a disease like this it is still possible to love and plan to the best of ones ability for the future of our children. That you can still be a father and husband, that one can stand up to adversity, face the future head on. Do what needs doing, that it's alright to rely on and ask for help. That in so doing it doesn't diminish you or make you a failure, instead it makes you wise, prudent and to those that look an example, even a hero to some. They will see someone to strive to be like. I really haven't answered anything for you my friend as I warned in the start. As for any wisdom, I'm not sure of that either. Take care, best of luck and hang in there my friend. Sincerely Al |
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Lohengrin, thanks very much for your view from the inside. It's very helpful for those of us on the "outside" trying to help our loved ones with PD. Shaaky, I appreciate your situation and wish you all the best. I wonder though, if it might be best to hold on to your house for awhile, at least until home prices start rising again. It would be a shame to sell it now, and then realize you could have gotten more for it if you could have kept on to it for another year or so. Now just seems like a bad time to sell unless you absolutely have to, but that's just my opinion and not an expert one at that! |
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| We rent our house, but I have found, in good times and bad, familiarity with the neigbors is invaluable. Several times, when John fell and I couldn't get him off the floor, neighbors came in and helped. Also, as mobility lessens, familiarity with the layout, the furnishing, pictures, pets, kitchen, etc. become more precious. It seems to me, this familiarity often anchored John in his worst moments and is a solace now that he is stable. Having a home also means friends can come and help. I don't think you'd have the same feeling with an RV. Also, would there be enough room for a wheelchair, walkers, etc? |
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| To all those who have made this forum outstanding, this thread is nearly tops on my list of the very best yet. To Al: A public KUDO to you for past efforts as well as your current masterpiece! To shakky,his caretaker and all those who have responded to date: WELL DONE! The collective problems/views expressed by caretakers, patients and their families and friends are the heartbeat of this forum. After almost 50 years in a business of managing wealth I would be the first to tell you (fee free) that there are no easy answers to the financial management questions/difficulties facing PD families. The answers offfered are sound advice. Wealth conservation is obvious. Adopt my model financial plan by committing to the SKI approach---SPEND KIDS INHERITANCE. bob c |
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| To Al - Joe and I recently went to see an Elder Law Attorney. He was incredibly helpful and told us what we can expect financially,what Medicare will and won't help us with, how to protect our assets, on and on. So, don't do anything until you have spoken with an Elder Law specialist attorney. If you need information, I know the law firm we visited gave a free 2 hour seminar we attended and then we made an appointment for further information. They are the only elder law firm in our state. I can pass on their information if you would like it. We were much relieved to know that I won't lose everything if Joe has to go into a nursing home or if something should happen to me and I would need to go into a nursing home he won't lose everything. I was afraid we needed to deed everything over to our adult kids 5 years before one of us would have to go into a nursing home or they would take everything - that is just not true, depending on how it is all handled with wills and trusts, etc . The cost for what we need to have done to protect everything is $900. Hope this helps - don't be afraid and don't do anything until you speak with a specialist. Then you will move forward feeling prepared to enjoy every minute you have together! |