For those who care for someone with Parkinson's disease
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| Was I ever happy to have discovered this site - to be able to talk to people with PD or those caring for them. Both my in-laws have PD - both are around 80 and live in their own home nearby with home care assistance for bathing, meals, and housekeeping. My mother-in-law was diagnosed 5 years ago. She has had severe mobility challenges for some time and is now experiencing a lot of confusion and memory problems. My father-in-law has only recently been diagnosed. I am the main caregiver in the family - I look after all their appointments, medications, and errands (except groceries). A huge challenge I've been facing has been their resistance to have help. They insisted on doing their medication until I discovered serious mix-ups on several occasions. My mother-in-law shuffles around the house without her walker, either holding onto furniture or my father-in-law (in which case they'd both go down!) and has had numerous falls (without injury fortunately). My father-in-law is very unsteady and has also had a number of falls, but won't use a walker. You can imagine the challenge of trying to take them both out and trying to hold onto both! Just this week my father-in-law got out of the vehicle and fell on the pavement before I got around. I am trying to figure out how I can manage taking them places, short of insisting my father-in-law use a walker. He is still grieving the loss of his license and I know that "giving in" and using a walker is likely another huge emotional hurdle for him. If we are somewhere that he can push a cart, that would be ok, but otherwise he really needs some assistance. I am very concerned about them falling. |
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Hi, welcome to our site. It sounds as if you have your hands full with your in laws. I can't imagine taking care of two pts with PD! You can say, ask or yell anything here. There are pts and caregivers and we are in all stages of the disease. I would encourage you to read past posts when you have time because they will fill you in on some situations and also give you a feel for who each of us is. It is a great group of people. My first recommendation to you would be to speak to the physician caring for your in laws and get a feel for what they really need at this time. From what little you have said it would appear that they have no business living alone. Do you think that they would do better in an Assisted Living facility? This would provide them with regular meals, medications on schedule and provisions for their transportation and medical care. If that is not an option they probably need someone with them most of the time. Now you know that both of them will rebel against either idea but the alternatives are worse than their objections. I can guarantee you that they are both going to fall and then they will have real problems. Do you have Power of Attorney? You will need their physician to make the recommendation that you be in charge of their care, including medical and living conditions. Stay with us we will try to help you get a handle on this situation. |
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A married couple both with PD is very, very rare. I think in all of my research I have read of only one such couple. I cannot help but think many many researchers would be very interested in learning their history. How long have they been married, did they grow up in the same area, what jobs did they have, how old are they, what medical histories do they have (like, did both have measles as children, have head trauma, etc.) as well as genetic testing....23andme is trying to establish a database of 10,000 PDers to try and see what genetic links there might be. Is their progression rate about the same or different? And on and on. Those of us here whose spouse has PD would also be very interested in learning this information. I have often wondered if PD is in anyway contagious and although all the expert say no, since they don't even know what causes this, I don't believe them. Some even believe a virus triggers PD, and those are definitely contagious. So I for one would be really interested in any information about this unusual situation. Thanks for sharing and welcome to the forum. |
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| Lurking, You can add another couple. Our support group has a Husband and Wife with P.D. (both worked for many years at the same company). Take care, best of luck and keep on researching. |
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I know this is very rare. Their PD dr. had wanted to do a study but could only find 6 such couples - not enough to provide accurate statistics I guess. They have been married for over 50 years, so it certainly does make one wonder about environmental factors. My father-in-law has cared for my mother-in-law for the last 5 years, but now that he also has PD their situation has become much more challenging. With the care and assistance they're receiving right now, they are still able to be in their home, but both their conditions have been declining quite quickly lately. We want to honor and respect them and their wishes and make their lives as comfortable and pleasant as possible, and know that it is important to keep them in their own home as long as we can. But the time will come when this is no longer possible. We don't really know when this will be as the PD progression seems to be rather unpredictable. There will certainly be difficult decisions ahead. |
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| I think my biggest frustration in all of this is their refusal to listen to the drs, therapists, and us. For instance, I've tried to make them understand that if they don't use their walkers and they fall and break something, there's a good chance they will no longer be able to be cared for at home. But they won't listen! Is this behavior related to PD? |
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My husband is the same way and it is frustrating. When we had a PT, OT and nurse coming in to the house they all told him that he was one fall away from going to a nursing home and that he had to use his walker at all times. He paid no attention to them and he certainly doesn't listen to me. Even when he uses his cane he swings it around like he's Fred Astaire instead of setting it on the ground with each step. It's almost like a defiant child who refuses to wear his mittens in the middle of winter. My husband wasn't like this before he had PD so I don't know why he does it. I think he's just spitting in the face of PD, but it could have disastrous consequences. Welcome to the board by the way! |
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I think many PD pts refuse to listen, I know my husband didn't. His personality would have predisposed him to that. He was a physician and had been taught that he was just one step below God. I think it is a secret course they take in med school. He always knew best. Many a time when he would fall I would first determine that he wasn't injured and then tell him "I don't see a walker or wheelchair anywhere near you". Same with his meds. If we found a combination that seemed to be working he began to play with the dosage. It was extremely frustrating for his neurologist who often relayed this message to him. My guess with your inlaws is it is a combination of pre existing personalities and the fact that they are 80 yrs old. Probably a great deal of denial going on there. As caregivers we have to make some very hard decisions and ones that are not popular with the patients. Sometimes we have to just take the bull by the horns and do whatever it takes to keep them safe. Unless you have 24 hr care I believe they are at great risk. |
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Both of my parents were diagnosed with PD later in life. My dad had tremors in his hands and a masked expression while my mom became completely bedridden and unable to walk. (She'd also suffered from a stroke.) My mother wasn't diagnosed until after my dad had passed away. Thank goodness for her physical therapist who suggested we get her evaluated by a neurologist....her primary care doctors were clueless. We were also unaware because her symptoms were totally different from my dad's. My parents grew up in the same neighborhood while in their teens. We always thought it was unusual that both of them were diagnosed with the disease but weren't aware of how rare that is. Take care, In-Faith, and thanks for sharing. |
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| Hi and welcome. Im new too. Thsi forum has helped so much. I have had the same issues when even mentioning a walker to my newly diagnosed father. He is falling often now and Im going to have to get tough with him. Good luck. How you are dealing with both parents is beyond me and makes me realize if you can do that than I can get through this with my dad too. |
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You have a hard road to walk, my heart goes out to you. In addition to all the other good advice, I wanted to suggest getting a home health aide (possibly live-in) as an alternative to moving to assisted living. I've gotten to be less than enthusiastic about assisted living -- it's a temporary solution at best, as it doesn't usually take long before the resident needs more assistance than they provide. With a live-in aide you get 1 to 1 attention (well, 1 to 2 in your case) which is better than any residential facility can provide. It's not cheap, but it would be less expensive than assisted living for two people. Sue |
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| in-faith: Welcome! I am one several patients contributing to this forum. My response(Warning-it is a long one) can be found by hitting the search button, entering bandido1 and reading my 10/28/09 post on tough love. I think it applies to your situation. Best of luck Bob C |
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I had both of my parents down at the same time--one with COPD and stroke and the other PD. My heart goes out to you. My first thought was why are you the primary caregiver? You are going to need help. Taking someone unable to walk somewhere by yourself (especially when they keep trying to walk and don't always follow instructions) is an accident waiting to happen. You are going to need help and a support system. Is there anybody "free" you can call on to help? Start looking and talking with the doctors about alternatives such as nursing homes, in-home health aids, etc. now even if they don't need it right away. Planning ahead helps prevent having to deal with a last minute crisis. Researching places and getting recommendations takes time. Local social workers at various agencies for the aging, the hospital, etc. might can also make recommendations. Make sure the Power of Attorneys, Medical Directives and anything else you need to know you have. If dementia sets in--you won't be able to ask those kinds of questions and take care of stuff later. Also, the Federal Government won't recognize Power of Attorney. You need to get Social Security checks swapped over now to you if you can--or get them deposited into a bank account that you are a signatory on if need be. Check all finances. If you need to apply for VA benefits or anything else that takes time too--but might can help offset expenses for their needs. Mom and dad were in a cheaper personal care home (mom was paralyzed and need 24 hour care) and that cost $4,000 per month, plus diapers, plus Ensure, plus medicine, insurance, clothes, personal hygiene items and other needs. The $4,000 got them a roof, a bed, food, bathing and meds administered. God bless and hang in there. If there's anything you need...vent...ask a question...we're here. |
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Thank you all for your suggestions & support. It is a blessing to be able to share with people who understand. I have been reading various other posts, and have found the insight from Bob & Al, who can share from the patient's perspective, especially helpful. I am so thankful for a small breakthrough we had this week. My husband had another talk with his parents about the seriousness of falling, taking medications on time, etc. and explained that we were doing everything we can, but they need to do what they can too. They finally seemed to have heard, because my FIL used his walker out of the house for the first time! Regarding them being in their own home, they currently have help with housekeeping, bathing, meals, etc. and we are close-by to help and check up on them. My FIL has been able to manage with the rest. Unfortunately, my MIL is requiring more and more assistance, and we fear it will soon be more than my FIL can manage. With regard to the legal and financial issues, you are right in recommending people deal with them before problems set in. |