From past threads and posts I’ve made, some of you may be familiar with my wife’s health problems. To sum up, she has arthritis, diabetic neuropathy, is legally blind, and was recently diagnosed with Parkinson’s disease. All of this has made her very unsteady on her feet, with stairs being particularly troublesome.
Last Friday I had a morning doctor’s appointment, after which I ran a few errands. Midafternoon I decided to take a nap before proceeding with the housework. Before doing so, I make sure that my wife is comfortably set up in the living room.
When I wake up I pull on a pair of shorts and a t-shirt and head downstairs (our bedroom is on the second floor). When I get to the living room my wife is not in her chair. I start down the hall to the kitchen, but when I pass the basement door I notice it is open; then I hear my wife call my name. I look down and there she is, lying on the floor at the bottom of the basement stairs.
We end up going to the emergency room, because she is, as she described it, “a big pain.” Everything hurts but nothing appears to be broken; x-rays, including a c-spine, confirm this. Not surprisingly they decide to keep her overnight. Unfortunately, the pain in her neck and back is so bad that they have to put her on painkillers strong enough that she’s barely conscious. Yesterday they are finally able to reduce the dosage, although she’s still so groggy that I have to feed her supper. Today she was better, and they may be releasing her soon. However, she may have to spend some time in an assisted living arrangement until they’re sure she can manage by herself.
And what started all this? She had decided that she was going to try to help out by doing a few loads of laundry. We have a friend who comes in twice a week to help with housework (including laundry); I have told her repeatedly that there’s no reason for her to try to go down to the basement, particularly since the stairs are steep and she’s complained in the past that she doesn’t like to use them.
In a recent thread I joked about the fact that she knows I love her because I haven’t killed her yet. Sometimes I wonder if she’s trying to save me the trouble.
Best wishes to your wife! I know how she must feel, though. It’s hard when you feel like you’re not pulling your own weight. Being waited on hand and foot isn’t as much fun as one might think. I hope she’s feeling better and can come home soon!
Care-givers have their own set of problems that don’t often get addressed. I know that you must feel very frustrated.
I wonder if there is a name for the insanity that causes people to be their own worst enemies. My sister has the same type of problem. She has a long list of illnesses that cause a lot of physical pain. Yet she is constantly driving herself to the point of physical collapse.
You may want to consider being very square with your wife about how her insistence on over-doing is causing you problems of your own.
Lurk, for one: I’m glad to see you posting more often.
two: my Mom had Parkinson’s, drop me an e-mail if you’d like discussion on what to prepare for (if that’s not to forward of me). AND hang in there hon.
I can only imagine what your wife is going through. It must be so humbling have your abilities taken away.
As well, it must be wearing on yoruself, emotionally and physically.
Of course I don’t know what your financial situation is, but since your wife wants to help and be more active than sitting in the living room, perhaps you can move to a small, single floor home so she can be safely mobile. It’s almost vital to one’s existence to feel somewhat useful and productive.
Best wishes and pats on the back for being a good husband. Handling sick people can be tough. They want to help to assuage boredom and helplessness when they often shouldn’t.
Maybe you could come up with ways for her to help that don’t involve her moving around a lot – like she could fold the laundry after someone else brings it up from the basement.
Hang in there, lurk – know you’ve got all kinds of doper support and best wishes coming your way.
having spent several months semi-disabled last year, i can sort of see things from your wife’s viewpoint. it’s incredibly disheartening and frustrating to be helpless and dependant. sometimes you just have to face the realities of what is and is not possible to accomplish. sometimes, though, with a little advance planning and accommodation, you can get past some obstacles.
stairs were a major challenge, since i was on crutches and couldn’t put any weight on one leg for a while. the method of “hopping” from step to step that they teach works, but was terribly tiring (and felt a bit risky at times). my solution? dignity be damned–if crawling up the steps was faster and felt safer, then hands and knees it was. i found myself a little backpack that i wore for my trips up and down, so i could bring things along yet still keep my hands free. (made things much easier, since i had to drag my crutches along on the trip too.) and going down steps one by one on your bottom should mean a much lesser chance of toppling over.
so if your wife is unsteady but can’t be dissuaded, try to at least convince her to travel in a safer mode. babies do it all the time, and most make it to adulthood. the loss of supposed dignity was a piffle compared to the greater ease in mobility for me.
My father has diabetic neuropathy in his legs. Thank goodness he still has his mental faculties.
My MIL is going through chemo for ovarian cancer (3+ years from when it was diagnosed, thank you very much), and is weak from the chemo frequently.
This is a woman who’s husband took off with all their savings 30 years ago. She raised the two children on her own, working for the county. She refused to move back in with her father when she heard him say to someone else “She’ll never make it by herself.”
She lives with us about 25 days a month. It drives her nuts not to be able to do so many things that she takes for granted. Laundry was her own time. She loves doing laundry. Folding, ironing, the whole shebang. Sometimes she can do it sometimes not.
We try to come up with tasks that she can do to help out. Sorting and folding works well, as we can bring the basket to her and she doesn’t have to get up. Socks especially.
Are there any other tasks that you can “assign” your wife so that she feels like she’s contributing?
More to the point, what can your wife do so that she is contributing? She’s sick, not stupid, and it seems to me that if I wre her I would know the difference between made up work and real contributions.
Don’t fall into the caretaker trap of thinking of her as a child (and it is oh, so easy to do. Even the best, smartest, most well-educatated and careful caretakers have to watch this all the time). Trust her judgement about what she can do. Make a list of all the things that have to get done, starting with the ones that you hate the most-the things that are causing you resentment–and together come up with creative ways that she can actualy take over some of these things so that you don’t have to do everything. Don’t assign her tasks: work it out together, based (like any other couple) on what you both hate to do and what you are both best suited to do.
And it’s ok to be angry with her: she knew that what she was doing wasn’t safe, and she did it anyway, like driving home after a few too many drinks. Be as angry with her ow asyou’d be if she had done that.
I wanted to offer my support, too. My dad (deceased) had Parkinson’s, too, and I (and my brother) took care of him for some time. As his disease progressed, not finding him where I expected him caused great anxiety. Seeing ambulances caused this, too. Waundering was a problem for us. Can you find her a job(let) to give her some useful work and keep her planted somewhere? Also, put a slide lock on the top of the basement door. Since most women are short, she won’t be able to reach it. Install it now so she will get used to seeing it- you don’t have to use it at this time, but falling down stairs is horribly dangerous.
I hope Mrs. Lurky is feeling better and has made it home. Tell her to put on her warm cosy wool jumper, grab a kitty or two and just relax for a while. You too. You both deserve it.
Thanks for all your thoughts and comments. Over the course of the last few years I feel like we’re stuck in that ancient Chinese curse: May you live in interesting times.
I can certain understand my wife’s frustration at her inability to do things around the house. Things like grocery shopping, cooking and housework were always her responsibility, and now she can’t do any of that. We’ve been trying to come up with things she can do, but between the mobility problem and the loss of vision her options are limited. At this point she can still manage to fix herself breakfast and lunch with a little advance planning, which means we don’t have to have daily home care.
What I find particularly frustrating is that she can’t seem to grasp the concept of making things easy for herself. We bought a set of those multi-compartment pill holders which I fill so she doesn’t have to try and sort out her medicine herself. She will come downstairs and leave the day’s pillholder in the bedroom so she has to go back up. I’ve tried to get her into the habit of always putting things in the same place so she doesn’t have to look for them, but we still end up searching the house for her upper plate.
The Parkinson’s is a fairly recent development, and according to her doctor we caught it in the early stages. We’ve gotten some info online and from the doctor; I’ll probably be e-mailing you in a day or two, NinetyWt, as any info is helpful. Last week I looked up a few local support groups and was going to see if we could get hooked up with them before this latest complication. There’s a senior center a few blocks from our house, and I’ve suggested to my wife that she drop in there once in a while if she wants to get out of the house; I may push this a little harder when she gets home.
lachesis, my wife has occasionally gone up and down the stairs on her butt when her knees were particularly sore or she wasn’t sure of her balance.
When we bought the house we didn’t think the stairs would ever be a problem, and we had both sworn that the only way either of us would leave was feetfirst in a pine box. Lately we’ve been reconsidering that decision, but the thought of packing up all our stuff (I’m an inveterate packrat and have collections of books, videotapes and CDs which would rival a small town library) is not a pleasant one. I’m also a few years from potential retirement, finances permitting, and we’ve been considering leaving the Chicago area for warmer climes at that time.
BTW, I talked to my wife again this evening and it’s still not certain when she’ll be coming home. She’s still in some pain and it looks like they’re still walking the tightrope of giving her enough drugs to control the pain while still keeping her functional. I did threaten to smuggle one of the cats into the hospital when I go to visit her tomorrow.
I hate to bump this but I’m in no condition to start a new thread and I need to vent.
Yesterday after work I went to visit my wife. I had talked to her doctor that afternoon and was told that they wanted to move her to rehab as soon as they had stabilized her pain medication, and that she’d probably be there for a least a week. I mentioned that I was planning to visit her that evening. When I walked into her room she looked up at me and asked why I was doing this to her, why had I abandoned her, and then started ranting about how she’s been lying on the floor covered in shit. I tried to talk to her and she just kept ranting about how I didn’t care what happened to her and why don’t I just leave her.
It seems she’s having a reaction to the pain medication they’d been giving her, which is making her delusional and paranoid.
Shortly after I got there they brought in her dinner; at about that time she settled down and I was able to get her to eat something. We were able to have a coherent conversation, and she seemed to have forgotten her earlier comments.
This morning I called the hospital and was told that she was ranting and being uncooperative again. Just now I called again and she had quieted down, and allowed them to change her bedding. They are trying different medications and different dosages, but it looks like it’ll be a while before they’ll be able to move her to rehab.
I’m planning to visit her again tomorrow afternoon. I’m hoping that she’s better by then.
I am sorry to hear of your problems. But I want to suggest that you look at life from her end. Everyone wants to feel useful. You think there is no reason for her to navigate the steps and she feels that it sure would be nice to contribute.
Dad has been pretty much reduced to sitting in his chair and eatting and he has told me he wishes he could die. Find a way to make her feel good about herself again and hopefully she’ll stop doing dangerous stuff.
Hi Lurkmeister, I’m really sorry you and your wife are faced with these difficulties. When my mother became incapacitated due to ALS/Lou Gherig’s Disease, she and my father came to live with us. She, like your wife, was always the one to take care of things around the house and was the type of person who could never be satisfied just sitting around. Even after she was unable to walk unassisted, she would still try doing things to help and would end up on the floor for her efforts. I started to give her things she could do from a sitting position and, at least for the time that her hands were still working well enough, it did help a bit. Some of the things we came up with were: folding laundry; sweeping or vacuuming, either from a wheelchair or I’d help her move from one spot to the next; picking things up off the floor (and there’s always something that doesn’t belong on the floor in my house!) using one of those extended handle grab/claw things; set her up at the table to help prepare food for dinner. None of these may work in your situation, but there’s always something you can come up with. I worked for many years as a special needs/special ed professional and had a lot of experience with adapted equipment and techniques. Even so, it was very difficult at times, to remember all of the things that could be done because I was so caught up emotionally in the situation. Watching someone you love lose their abilities and their sense of self and having to take on all of the responsibility on top of it is, to say the very least, emotionally taxing. I wish you both the best in dealing with your situation.
