My mom was hospitalized for severe constipation for SIX DAYS! She’s had in home care for about 3 weeks and family coming as well to work with her. They will be done soon and Mom will still be chair ridden, I believe.
She can’t walk or toilet without assistance 24/7. I don’t expect family’s interest to last very long afterward. I live with her in her home free of rent and provide care. We are talking REAL 24/7 care with her not walking, meaning I have to arrange for a sitter to leave the house at all.
My question is: how do I keep my mom still trying to regain her strength when the cheering section is gone? She resists my efforts to keep her moving often resorting to lieing in bed for days at a time. Her complaints are many and they have been diagnosed as arthritis so not much help for it.
She was taking pain pills that were the cause of her bowel problems, they said, but more to the point, her ONLY activity is walking from bed to recliner and back. She wasn’t moving around much at all causing her metabolism to slow even more. Since she sleeps 16 hrs evry night, she doesn’t even need to get up and pee during her waking hours. She is still on her hospital schedule and waking early with an alarm right now, but that is not her reality at all. I can’t get her to get up before 2 in the afternoon normally.
Maybe I’m anticipating problems but we’ve been thru this many times. I get in home therapist here for strength building and as soon as they leave she goes back to her old routine. I’m serious, she finds a complaint and will stay in bed for DAYS barely eating or taking fluids. I try to enlist help with family, but I suppose by that time I sound like a screaming ninny and their response is: “she’s 92 you know,” or, “ya she’s lazy.” That doesn’t help me one bit to get her moving.
I understand completely when she asks me why should I get up? Her eyesight is poor, she can’t hear, no one is around but all that is worse because of her willingness to do nothing! Is this going to be a scenario much like a drug addict that I have to accept that it’s all up to her to take an interest in her own life and health?
I feel so responsible that I can’t motivate her myself. Truthfully, she was not taking as many pain pills as she said because I withheld them a lot without her knowing. The last thing I wanted was for her to become an easy chair junkie. She was prescribed narcotic pain pills for diabetic neuropathy and since she left the hospital she’s been getting only Tylenol and let me tell you, she is not happy with that. She’s also getting a lot of digestive meds and laxatives so she won’t get backed up again. I think it is their visits that motivate her cooperation, and I just haven’t been able to stimulate her into trying to help herself when we are alone. We WILL be alone again I’m sure of that. We don’t have a car or much spending money so she really is isolated. I can walk to nearby stores but not now that she can’t get up at all. Any advice please?
Your Mom has arthritis and diabetic neuropathy which are both painful health issues. Your Mom was prescribed narcotic pain pills for the diabetic neuropathy for a reason…because diabetic neuropathy is damage to the nerves as a result of diabetes and is super, super, super painful!!!!
Diabetic neuropathy symptoms include numbness or tingling of the feet and lower legs, pain or burning sensations in the legs or feet, and loss of sensation in the feet or lower legs. Here are how some people with diabetic neuropathy have described their pain on the website
www.medicinenet.com/diabetic_neuropathy/article.htm :
1) “I do not always have numbness but also have a hard time walking on any surface such as rugs or anything, on bare floors, and socks hurt my toes and soles of my feet. This means I am in pain shortly after I get out of bed. I also get stabbing pain in my middle toes.”
2) “I have major numbness in feet, I cannot feel them after standing for 5 minutes in one place. Sometimes at night my toes and feet cramp and hurt really bad like a really hard Charlie horse. I also have a burning sensation in my lower legs that feel like a hot poker is being shoved on them.”
3) “Feet go numb and tingle mostly evenings. Sometimes pain is so bad I cry…I can't wear shoes for more than a couple of hours before they start burning. Sometimes pain and burning is so bad I would love to cut feet off, that couldn't hurt any worse.”
--No wonder your Mom doesn’t want to get out of bed if her feet hurt as bad as these people.
Some of the methods used to control diabetic nerve pain are: combination of multiple prescription medications taken together such as narcotic pain medications, tricyclic antidepressants, duloxetine (Cymbalta), ibuprofen or diclofenac (Voltaren) or other NSAIDS, pregabalin (Lyrica--tends to cause major weight gain), and/or gabapentin (Neurotin); topical agents such as Lidocaine and capsaicin; a bed cradle to keep bedcovers off of sensitive feet and lower legs; heat or cold patches for short periods of time (to avoid burns or freezing of skin); eating small, and/or frequent meals and avoiding fatty foods. Some home remedies listed on the website include: coconut oil (orally or topically), evening primrose oil (EPO) capsules, a lidocaine based rub, “an electrical device one puts one's feet on so an electrical current stimulates the foot, called the revitalize”.
I suggest that you talk to your Mom’s doctor or a pain specialist before you start any of these home remedies.
Plus, I think that you are unknowingly adding to your Mom’s immobility problems by withholding pain medications because you’re scared of being accused of making your Mom a “drug addict.” You stated that “She was prescribed narcotic pain pills for diabetic neuropathy and since she left the hospital she’s been getting only Tylenol and let me tell you, she is not happy with that.” Of course, she wasn’t happy. She was probably experiencing withdraw symptoms from not receiving the narcotic pain medication!
Have you told your Mom’s doctor that you withheld the prescribed narcotic medications and replaced it with Tylenol (without informing your Mom and without your Mom’s consent )? What did he/she say about that? Withholding prescribed medication without a person’s knowledge can be a serious offense and might be considered “ELDER ABUSE”!
You need to seriously reevaluate you and your Mom’s situation. I think that it is time for your Mom to go a nursing home. I know that this is not what you want to hear, but your Mom IS 92 YEARS OLD, not 29 years old. She has health problems that naturally occur when people are elderly and she requires “REAL 24/7 care”.
You have done your part wonderfully and lovingly to care for your Mom. Now it is time for others to take care of your Mom so that you can take care of yourself!
But at some point a line in the sand has to be drawn because you can't keep increasing your level of care.
Something you can try is making the therapy sessions a treat. Relax her by playing favorite music, do a few exercises yourself and see if she'll follow along. Then finish the session with a treat, a reward. Just as we reward animals for performing, sitting, begging, etc., we sometimes need to find ways to reward our parents for helping take care of themselves.
On an opposing issue, perhaps she's become uncooperative because she knows she can get away with it, and get you to compensate for her lack of cooperation.
I'd continue to focus on the meds so that they're not interfering with her ability to get up, and even consider raising the issue of depression at her next doctor appt. I'm not one to advocate for anti-depressive meds on a regular basis, but if it gets her over this hump, it could be worth it.
If you think though that she's just taking advantage of the situation and not being cooperative, it might be time to think about a long term care facility, and filing for Medicaid. You may have to start telling her that you physically can't do any more w/o affecting your own health, and where will she be if you become ill or hospitalized?
We had some serious thinking to do when I had a stroke, and no one was available to care for my father. Had the stroke been catastrophic, or paralytic, he would have been in a desperate situation.
As long as she can get away with not cooperating, she may just do that. I'm not trying to be critical, just putting out some thoughts out for consideration.
For years we've all tried to help Mom to be more active, but she doesn't like exercise and she does like being waited on and catered to. In my mother's case, I think we all pretty much agree that the window of opportunity for her to become more capable and self-sufficient has closed. Her body condition is too poor, and with severe anemia the last few years, it can't really be improved.
I focus on what I'm willing to do, not what I'd like her to do. She would like me to cook all her meals but I cook for her only occasionally, when I feel like it. It's frozen meals or take-out the rest of the time. I won't help her in the bathroom. If she becomes any more disabled (e.g. unable to toilet or feed herself) she'll be looking at a nursing home, and I've told her that. I'm not going to sacrifice my life to make up for her failure to take care of her own.
I took a series of lectures years ago on the subject of "managing the technical professional." The only talk that has stayed with me all these years is the one on motivation. The speaker started by asking us to stand if we believed it was part of management's job to motivate employees. Nearly everyone stood.
Then he talked about white mice and big wooden boxes with mouse-sized mazes. A mouse was placed at the beginning of each maze. Some mice explored the paths near them. Most just sat there. Is there a way to motivate them to seek the end of the maze? Someone called out "cheese!" Ah yes. If the scientists puts a small, fragrant piece of cheese at the end of each maze all of the mice are able to find it. Some take longer than others, but they all get to the cheese.
Those who think the cheese motivated the mice (or that the scientist motivated the mice with the cheese) should remain standing. Very few people sat down.
The mice were brought back to the beginning of the maze and a new piece of cheese added at the end. Again, all the mice found the end of the maze, many of them a little quicker this time. This procedure was repeated again and again. By the 4th round some of the mice just sat at the beginning of the maze. By the 7th round all of mice just sat at the beginning.
All those who still think the cheese motivated the mice remain standing, and be prepared to explain why it failed to do so consistently. Lots more people sat down.
Access to cheese only motivated the mice when they were hungry. It was the little critters' hunger that motivated them all along. It was never the cheese or the clever scientist. The motivation was there in the mice all along. The scientist merely found something that would activate/satisfy their own internal motivation.
(And, of course, the rest of the lecture was about how this applies to managing computer programmers.)
Char, I don't think you can be responsible for motivating your mother to do something she doesn't want to do and which she considers pointless. If you are smart and/or lucky, you MIGHT be able to figure out her internal motivators and remove obstacles or activate that motivation.
Start with why she seems more motivated with the therapists? What is the payoff for her? To appear/feel more capable in front of strangers who are judging her? To get the event over with and have them leave? You may or may not be able to duplicate the motivating conditions (you can't be a stranger, for example) but it would be helpful to think about it.
Mom can't walk to the neighborhood store with you anymore. What motivation might she have to get out of bed, get dressed, and let you push her wheelchair to the store? Is she motivated by her sweet tooth? "Mom, I want you to go to the store with me today and pick out our special treat for the week" might be an appeal to her own motivation. Is she a bit vain? "Mom, I'll bet Lucy at the grocery store would really love to see that fun paper corsage Granddaughter made for you! This is her day to work, so lets go get our groceries and you wear that flower!"
I think you have a very difficult task to figure out what Mom's natural motivators might be, and then to somehow tie them to the tasks you want her to do (for her own good). Hooray for you if you can achieve that with a few tasks. But don't be down on yourself if you don't have a magic wand to do it all the time.
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