For those who care for someone with Parkinson's disease
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Hi all, In the last month my husband has fallen at least five times. Last night was the worst. He fell down a half flight of stairs and hit his head so hard that he left a hole in the drywall. I spent most of the night in the emergency room. Miraculously, he didn’t break anything and ended up with only a concussion. He is very stubborn, and insists on walking up the stairs to the bedroom in the second level of our house. I walked behind him tonight, and I was absolutely appalled to get a good look at how he was climbing stairs. He can barely lift his left leg, and sometimes he crosses his feet. If he walks those stairs, he’s definitely going to fall again. But he won’t accept putting a bed downstairs. The problem with the leg also makes his walking really really bad. Mobility is becoming an increasingly enormous problem, even using a walker, and I fear he is going to end up in a wheelchair. I know that he is afraid of it too, but he never talks about it, just gets irritable when I try to bring up the subject. Has anyone else out there experienced these kinds of issues? What do you do? If the man can’t walk, I don’t see how we can continue to live in our home. Our house will not accommodate a wheelchair, and honestly, I don’t know whether I have the strength at this point to deal with all that. Last night, when I heard him fall -and there was a huge crash and then dead silence- I knew exactly what had happened. I found him unconscious and immediately ran to call 911. But I didn’t feel upset, I just felt, OK this is it. He’s either dead, or he is so injured that he is going to have to go into assisted living. And while I was terribly sad, I felt a sense of relief. The hospital discharged him, and he’s back home, and now I’m waiting for the next fall. I’m certainly glad he’s OK, but I’m not OK. Now I can’t sleep without listening for a crash again. It’s inevitable. I spoke to our primary care doctor, who is pretty worthless. He said well your husband is just going to have to start thinking about assisted living. But my husband is totally resistant to that idea. We’ve been married for almost 40 years, and I can’t just pack him off to some assisted living facility. If there is anyone else out there who has had a similar situation, I’d love to hear how they handled it. Maybe there is no good resolution. All I know is that I am going to feel guilty and alone if he doesn’t stay in the home, but when he is here I live in a state of constant anxiety. Well, it’s helped just to get this off my chest, so thanks for reading. This disease just is awful. Catlady |
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Yes, Catlady, my hubby has fallen so many times it's hard to keep track. So far none of them have resulted in a trip to the emergency room, but he has multiple black and blue marks and bandaids on knees and elbows. When he walks his body goes forward (leading with his head) causing him to crash into something. Also like your husband he has trouble lifting his legs to go up and down the stairs. We are in the process now of trying to get a stair lift. If it was up to me it would have been installed months ago. But again "Ol stubborn him" wants to get the county involved in order to get it cheaper (I guess). Anyway, the process is taking FOREVER and they're asking for information we don't have. (Or don't have handy) and it's ending up being a big headache and causing us to have arguments and problems we don't need. Anyway I hope you're husband is doing better. I will pray for him and you as well. |
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We aren't quite to the place you are but we are planning for the future. We have completely remodeled our upstairs bathroom to be handicap accessible. We did this a couple years ago. We plan to put in a chair lift when it's needed. Thankfully, my husband is aware of his situation and hasn't fought the changes we will need. At least not yet. He told me a while back - you know, there will come a day when I won't be able to drive... In addition to PD he also has issues with the femoral arteries in his legs. He has had to have bypass surgery and has stents in both legs. He will have to deal with lack of mobility from PD or possibly future amputation of his lower leg(s). He's also diabetic. We just take things as they come. Trying to plan for the inevitable. ~sigh~ Just last weekend, I had to bring a saw up from the basement for him because he told me he was afraid he would fall if he tried. So I am grateful he seems to understand his limits. He promised to tell me if he ever falls. He's at home alone during the day. He told me this summer he had fallen outside on the driveway. He was just a bit shaken but uninjured. He will be 69 in January. I plan to retire in the Spring and I hope that being home together will allow me to keep better track of how he is doing. Prayers for all of us struggling with these issues! I'm not looking forward to further decline in his abilities. |
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| Thanks poollady and Sparkysgal for your kind wishes. I never thought of a lift! That is something I will certainly researchto see if it is feasible. I’m sorry both of you are struggling with these issues too, and I know how much anxiety this causes. My husband is doing OK today, and hardly has complained about pain or any other consequences of his fall. But I think it put a healthy fear in him and he has been a little bit better about allowing me to help him go up and down the stairs. Nonetheless, it is now almost 1 in the morning, and I am just wide awake worrying that if he gets up to go to the bathroom in the middle of the night he’s going to fall. His balance is just terrible, Not only from the PD, but also from previous spinal fusions, plural. It just doesn’t seem fair when there are other physical problems in addition to the PD - PD is enough. And driving! That loss of independence is really shattering for a guy. I send hugs and prayers for both of you to have the strength to deal with all these issues, and that your husbands stay as mobile and upright as possible. |
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Hi, Catlady. My husband is not at that point yet but he certainly also has his stubborn areas where he won’t accept his limitations. One thing I did do was our local Area Agency on Aging has a program where they will do a free evaluation of a home safety for seniors. They came out and advised us to get some handrails for the bathroom and other areas. I’ve been saying that for months but I guess hearing it from someone else made more of an impression, ha! I guess it was easier coming from a neutral third party. So that helped a bit. Maybe some third party might get through where you can’t. Also, if his primary care doctor is not interested, do you have a neurologist? We were having some issues and I talked to his neurologist, and she ended up referring us to a medical social worker who had some helpful suggestions. If you don’t have one, can you see one? If you have one but they are not helpful, can you see a different one? You should be able to share your concerns- I’ve had to write my concerns in a letter to my husband’s doctor, because if I spoke up with my husband there, he’d just deny it. In the long run, what I’ve been thinking about lately is an independent living/assisted living facility a few towns from us. We could move there to an apartment as a couple, and then I can do most of the care but there will be someone available if he falls out of bed in the middle of the night or whatever. They have a lot of senior activities, some of which he might be interested in and some I might be, even though I’m still only 53. We just have to figure out what it would take to afford it. Anyway, if you can find a medical social worker in your area, either at a local hospital (maybe the one that saw you in the ER) or by asking local agencies for seniors, they will likely be familiar with local resources to tell you what your options are. |
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Mom has fallen dozens upon dozens of times over the years (possibly more than 40 times) due to her orthostatic hypotension (blood pressure dropping, especially moments after first standing). She got a compression fracture in her back in 2018, and broke her wrist about 5 weeks ago. She gets the cast off Monday. (Her balance has actually been pretty good. I don't remember her ever falling from a balance issue, but there may have been a time or two.) We have a split level home, but mom does not need to go downstairs for anything (bedroom, bathroom, kitchen, and living room are all upstairs). She can be stubborn and impulsive, but she knows not to use the stairs without help (not that she hasn't done it anyway on very rare occasions--never fallen down them though, thank goodness). I have often thought about if it had been my dad with the Parkinson's, I never would have been able to take care of him. He is so stubborn and unreasonable, it just never would have worked. I'd like to get her bathroom remodeled in the summer for a walk-in tub. But I have also thought about remodeling the downstairs if needed at some point if the stairs become unmanageable. A lift might be a better option to continue using the upstairs. I very well understand the tension of waiting/wondering when the next fall will be. I've kind of gotten used to it, so it is just a low grade tension that never really goes away now. I strive to do all I can to make a fall unlikely, but I also must accept that not everything is in my control, and not everything is predictable. I also try very hard not to think in catastrophic terms--to take each moment as it presents itself and deal with it as it comes. I'm better at doing this than 5 or 8 years ago, but still not perfect...and half the time I think exhaustion has numbed some of my emotions, which helps me get through the low grade stress more easily. I don't know if this is helpful at all. I try not to blame myself, or mom, or dad if something happens, because the disease is the root cause, and that is no one's fault. When mom broke her wrist a few weeks ago, she apparently started to feel faint in the kitchen, the dog barked (the dog can see when she's about to faint), so dad walked her back to her living room chair and told her to stay there. He had to go to the bathroom before his eye appointment. But as soon as he left the room, she decided she was going back in the kitchen (her judgment is poor when her blood pressure is low also), fainted, and broke her wrist. Later, her brother said she was on the phone with him and she wanted to say goodbye to dad before he left (possibly confused since he went to the bathroom and not out the front door), so he was blaming himself also. It's just too easy to throw blame around, when really it's just the disease--which isn't emotionally satisfying when something bad happens, but accepting it is a better head space to be in. |
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| I feel like all of this waiting and worrying about the next fall is so exhausting. Not to mention how it is AGING us even more than the regular worries about where things are headed for our PWP. I am feeling selfish today….thinking about myself instead of him. I feel like I should start facing the fact that this is going to be my life. It’s so depressing. I will be 65 on my next bday and I feel so old. Hubby is 70 & in addition to the PD he has prostate cancer (since 2002) he is going pretty strong. It could be (u never know) that I actually die before him… that would be very bad for his situation... no kids. Been doing this caregiving FOR SO LONG. feel so tired of helping him out of each chair and making sure he is steady. No huge falls yet but I’m sure they are in our future. Every single day I have to try so hard to keep my spirits up. Life is passing me by. Oh well, what can I do? I have to just keep my chin up and keep moving forward. I am trying to be optimistic and grateful. No one but US knows how very very challenging this really is. Incredibly hard. We have to be strong and keep going. We have been arguing more lately mostly because I find I am not sugar coating things like I used to…too exhausted. Now I just tell it like it is. Every little thing I try to do around the house is a big discussion and he has to change my intention so then I give up & nothing gets done or fixed the way I want it to. So frustrating! Trying to do things to keep the house up in case I ever need to sell. Wish I could at least function the way I want to. I feel so suppressed. He doesn’t like it if I go out with girlfriends too often so I have to space out all of my visiting. So hard keeping friends! |
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It has taken me a while to get back and read all of your responses because I have been so tired dealing with my husband. As a result of his fall, he is now experiencing double vision. And, he says he has no sense of balance. So, added to my list of chores, is helping him on stairs, doing more around the house that he is not safe doing, etc. Still, I’m glad that the consequences of that fall or no worse. But it seems to have accelerated some of the confusion and other symptoms of the PD that he has experienced lately. I’m hoping that as he gets further from the fall and heals, he will do a little better. Greyeyed, you aregiving me good advice about taking it day today but I’m not very good at taking that advice. The future looms large and dark and try as I might, I just can’t keep my thoughts to what’s happening now. It always hits me at night when I’m trying to get to sleep, and then I don’t get a good nights sleep and it makes the cycle even worse the next day. But I’ll keep working at it and I hope it doesn’t take me five years to get better at staying in the moment. Daytoday, I empathize with you alot, as my husband and I have been arguing more and more lately. Like you, I’m just being more blunt because I’m tired of trying to be “nice” about how I say things. I am 70, and I’m pretty good shape, but I feel like the last years of my life are going to be spent taking care of someone who is very difficult and disabled, leaving me no energy for the things that I would like to be doing. I keep reading suggestions for care partners from various organizations, and every one of their suggestions entails more and more of my time and energy poured into this person who is bears less and less resemblance to the man I married. But as you say, you just keep going and I try to grab some time every day to do something for me, even if it’s just a walk to the corner. |
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Hello all, I have read about what you are all going through and I am counting my blessings. My husband is not experiencing problems to the extent you are describing so I am listening and learning from you all. I need you all to know that I hear you. All I can offer right now is my ear and my shoulder. I am still appreciative that we have each other on this forum. We are on this journey together. NoMatterWhat |
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Hey Daytoday and all of you. Don't blame yourself or feel guilty for taking time for yourself. Afterall, if you don't take care of yourself how are you gonna take care of the PWP? My hubby is 80 and I'm 78. We still get around and we run our small business. He fell again at the top of the stairs last night, but was able to crawl to the bathroom and pull himself up with the vanity. He is facing some other health issues right now, but we're taking one day at a time, and praising God for every day we have. Keep you chin up and think positive thoughts. BTW we each got our Booster COVID shots yesterday. |
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Poollady…you give me great hope. If you are 78 and your hubby is 80 and you guys are still working a business, I have to hand it to you. Pretty amazing. Where do you find the strength? Sounds insignificant but find it difficult to even make phonecalls to get regular stuff done (hubby likes to butt in when I am trying to converse so I can’t even hear what is being said to me) and then when we need to do simple tasks like go to doctor appts or get oil changes etc… it is tough to get them completed. Feels like I have to climb Mt. Everest in order to get small things accomplished. Yesterday while just trying to grocery shop I thought I had lost him in the store and I felt panicked inside that maybe he was wondering around looking for me but he was okay. Just little things like this can cause stress and, like I said before, AGE me. All that cortisol being released into the bloodstream causes my cholesterol to climb (which I don’t need). He is going thru so much just trying to function that the caregiver should NEVER EVER complain about anything right? After all, our bodies can function properly. It’s just that having to constantly be the “work horse” can create tension and sometimes some resentment can build up and this is never good. It’s “stinkin’ thinkin’” that I need to constantly try to block. Feel for all of you. Thankful that we can gripe to each other to relieve some stress at least. (We got our booster shots too). |
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The small things do add up. I think everything is catching up to me. Been kind of depressed lately. ... As I already posted, mom fell and broke her wrist at the end of September, which stressed me out. Then about three weeks after that, the cat ran away. I had hope he would return for about a month, but that's gone now. Then the dog got sick, had three teeth pulled, vet said she might have cancer, then she improved some, but last Monday was having trouble standing when I went to work. Dad took her to the vet and her red blood cell count had dropped even more from the week before, her liver was enlarged, and the vet said she would be going into seizures soon before dying. So we had to have her put down. We now have no animals for the first time since 1989, and that was only briefly (our first dog was in '79). ... Then dad did something to HIS wrist Friday night--slept on it wrong, or something. So both of them have wrist problems, but luckily both seem to be better today. Mom goes in for therapy on her wrist tomorrow, but it is healing well. We have a follow up for her DBS on the west side of the state Wednesday, but that seems to be working out fairly well also. ... I feel like I've barely gotten to catch my breath before something else happens, and I don't really have anyone to depend on in a pinch. I hired a caregiver for 6-7 weeks, but mom has been doing so well I cancelled the service last Wednesday. ... I've been trying to eat better, exercise, take vitamins, etc., but my mood has been low. I don't think it is any one thing, just everything together (and the holiday season). Also, the dog went so fast, I think it is making me wonder what I would do if either mom or dad passed that quickly. I really have no idea what I would do. |
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Greyeyed, So sorry about your cat and dog. I can imagine how empty your home must feel.That in and of itself is enough to bring you down. Add on other issues, and it must be really hard. FWIW, when I lost my fur babies last summer, I got not one, but two kittens. I knew I needed something joyful in my life. Just seeing them makes me smile and it’s been great for my PWP too. Would you consider getting a puppy, or new kitty? I don’t have anyone to fall back on, either, and it is hard. Just hang in there and take it a day at a time. No point in worrying in advance, it’s never the things you worry about that actually happen. I’ll be thinking of you! |
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Pets really do help. We have a kinda weird dog (black lab mix) but he is actually good for hubby. He (hubby) gives him biscuits every morning while we are sitting at the table having coffee. And that helps to get his mind off the pain and helps to lighten his mood so he doesn't feel so depressed. So to all of you enjoy your pets hope everyone has a Happy Holiday Season! |
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| 4 yrs ago we got a Jack Russell Terrier (rescue dog) and I didn’t think he would be as WILD as he has turned out to be. I am praying that he still will calm down a bit but OMG he is a big hand full and if hubby gets worse, I may not going to be able to handle both of them. DH doesn’t want to have a fence put in but I want one. He’s afraid the dog would bark and he is so afraid of bothering the neighbors. All of the walks are probably keeping me more fit than had he not come into our lives but it can be a little icy/ slippery and if I get hurt we are REALLY sunk. I just have to. Keep telling myself to keep going. DH seems to be getting stiffer and slower since turning 70. DH absolutely LOVES feeding the dog and giving him treats. It’s the highlight of his day…that’s sad but probably true. I am so glad I can spill worries to all of you here. It helps a lot. |