How can I get Mom to keep moving once in home therapists are gone?

Is it important to her to be able to stay home? What if you said something along the lines of, "I hope you can stay here as long as you want to. That's why I hope you'll help me take care of your health so that we can manage at home together for a long time. When you become too weak to get out of bed or get to the bathroom on your own, I promise to find a great care center for you! But let's try to put that off, OK?

She might actually do better in the appropriate level care center. Don't ever make it sound like a punishment. But if you think talking about staying well enough to stay home might trigger her self-motivation, it would be worth a try.

A low tolerance for pain is a real burden, poor thing! She shouldn't take more meds than she needs, but keeping ahead of the pain is important. Don't wait until one dose wears out before offering the next. The goal is consistent relief, not an up-and-down pattern of pain, relief, pain, relief.

Watching my mother, I'd say that someone with a low pain tolerance fears pain, anticipates it, and tries very hard to avoid it. My mother fell at home and stayed lying on the floor for several hours before remembering to push her alert button. Did she try getting up? No. She simply was afraid it would hurt. The ER examined her and sent her home. No injuries. Nothing they poked or prodded hurt her.

I have a high pain threshold, but when it is crossed the only thing that motivates me is getting the pain to stop.

My mother's life was so much better when the nursing home was able to manage her pain. Turned out that Tylenol was enough, given in high enough doses and on a regular schedule, never missing a dose.

I think the first order of business is to get your mom's pain under control. Perhaps her doctor could refer her to a pain clinic.

I don't remember if anyone has already suggested this, Char, but I think you might get some insights from a books called "Being Mortal: Medicine and What Matter in the End."

And thanks for coming back with an update!

P.S. Yes we are back to her having to watch Jimmy Kimmel and sleep til 2pm schedule. I find her in bed holding her alarm clock...

I just wrote a long update that disappeared so plz forgive me if it reappears and I have double responses.
I totally agree with you Texas, although now I have family involved I’m told I expect too much. After all, she’s 92 for goodness sakes! As if I don’t know that and where have you been the last six months as she’s been deteriorating in her bed wallowing in her own urine?
And can you tell I’ve become bitter? Mostly I’m tired of being angry all the time. It doesn’t help me get her up out of bed when I stand there and stomp my foot and tell her all day what time it is.
The update is that the critical time that I feared has come and hopefully passed. She caught a cold from my sister who warned me that it was a pretty bad bug. So I nursed her through trying to get liquids down her, keeping her elevated so it wouldn’t settle in her chest and all that.
True to form, she quit exercising and cut off visitors and grumped around the house.
When she stated in bed all day I warned her we are not going back to that! I am not going to keep propping her up when she’s made herself too weak to walk. Or nurse her throwing up when she hasn’t eaten and hasn’t taken my remedies to settle her stomach.
She asked me do I want her to go to a home and I said no I want you to take care of yourself.
Well, yesterday she got up full of piss and vinegar and guess what? Now I’ve caught her cold. Go figger...
I liked the story about the mice. Truth is I don’t know what motivates her. She’s never been a self help person. She unashamedly asks the doctor, “isn’t there just a pill I could take?” When she said she was hurting so bad it was like giving birth. I’m the youngest and I’m 65 years old and it occurred to me, she’s always said she was knocked out during delivery, hmm?
In fact, she’s often said to me she thought I died during my child birthing pains. When I asked what she means she says, “you were in so much pain!” I think maybe she has no pain threshold.
She’s trying to get used to dentures but she spends up to 45 minutes trying to numb her gums before she attempts to remove them! I’ve been walking around her saying, “forget about the ‘trying’ get to the ‘doing’ and get it done!” I need to listen more carefully to myself. I have more insight than I realize. I just don’t know how to put it in practice.
I do worry that I’ve created these problems. Have I kept her alive longer just for her to have a diminished existence? Who did I do that for? Fact is I wouldn’t do anything different under the circumstances and I’m glad to be able to be with her when she needs me. She’s always been here for me and that’s the truth!

Congrats Texas! Stand down and take a break....

Just yesterday, I shared my new "plan" with my 88-year-old Mother who is recovering from a broken fibula and fractured hip. Starting today, SHE is in charge. If she wants to exercise, great. If she wants to shower, great. If she wants to eat, great. If not, so be it. She is a grown woman and knows what she should or should not do. She is too lazy and lacks motivation to get up and exercise (especially since the visiting PT is now finished) and really does not care much about anything. Yes, she is taking an anti-depressant. She always has an excuse for everything she does not want to do: "my knee hurts; I am too tired; I need to rest." On my end, I simply decided to stop nagging her about EVERYTHING! I am tired of constantly reminding her to stand up straight and to take a shower and to get up and move around. I do not like what I have become when it comes to dealing with Mom. We'll see if her mild cognitive disability plays any part in her ability to make good decisions about her own physical well-being. I truly believe that she knows what she should be doing.

My mom is the same in many ways . But she does walk if she isnt super tired that day. She likes music though and likes to dance..even if its just chair dancing . ( and she wears hearing aids) For some reason she likes santana lol. I think its because there arent that many words ( which she cant really catch).. But she likes the tune

I’m sorry I didn’t respond to you all! I didn’t see that anyone answered me! I checked my activity but I didn’t click on my question.
When I took over my mothers care ten years ago she was already taking pain pill rx on her own and was often very impaired.
Also, she suffered from nausea and vomiting and bouts of diarrhea which limited her from making plans socially “in case she had a bad day...”
I determined that she was over medicating herself and also that she’s very sensitive to the pills making her throw up. I started monitoring her on how often she took it but also made sure she took it with food. She later admitted that some days she was “real fuzzy” on the pills. She still had nausea and vomiting so I tried to determine her level of pain and found she was taking them by rote whether she had pain or not so we cut back even more. Face it, if your meds make you nauseous and ruin a whole day for you, you don’t need to take them for a headache. She takes neurontoin at bedtime as well for burning in her feet that keeps her awake.
I also determined that the metformin she was taking was causing her diarrhea. The pharmacists don’t agree with this but I read many testimonials about generic metformin causing this. Her insurance requires generic where applicable so her dr changed her to januvia and she responded well right away.
Now fast forward thru a fall at home requiring in home therapy, therapists increased her pain meds which caused her to completely lose her mind for a while when I told them about the nausea so they added phenergan, up and through this recent hospitalization. The hospital stopped her pain meds as soon as she was admitted and noted in her discharge “only Tylenol for pain” six days later.
Whew! That was a long answer. I’m sorry for that. I will be right back. She and the pets are all fussing for dinner.

PAIN

I hate it! Fortunately I have a fairly high pain threshold, but once it is crossed I'm a real wuss. My poor mother had a very low pain threshold and also bad arthritis and also sensitivity to many pain drugs. Keeping her out of pain was a main goal, and I had no trouble empathizing with that!

Was your mother weaned off of her pain medications while she was in the hospital, Char? And were you told to discontinue them at home? Or was that your idea? Did you have some advice on how to go about it?

I think a little clarification about the pain in your mother's life, and the ways of managing it, would help us understand the situation better.

"I feel so responsible that I can’t motivate her myself. "

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.

CharK60, I am sorry that everything seems to be going wrong. Your Mom’s home care will be ending soon, your family most likely will not stay around to help take care of your Mom, the prescribed narcotic pain medication caused your Mom to become severely constipated, your Mom has poor eyesight and she can’t hear, and, worse of all, you feel so responsible that your Mom is not getting better no matter what you do.

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!

You've answered your own questions your mom has limited sight and hearing so she probably feels why bother. She is not up and about either, which probably has caused some muscle loss as well. In short she probably is just "existing" until her time comes, sad to say.

Char, I'm afraid your situation is not uncommon. My mother, who's 87, is the exact same, what my sister who's a former nurse would call a "bed-chair patient." My mother gets up to pee but apart from that it's from the bed to the recliner in the morning and the reverse at bedtime. All meals and drinks have to be brought to her. She can leave the house for medical appointments only in a wheelchair. And she refuses physical therapy, saying she's not up to doing it.

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.

Motivating seniors to be active, ouch. You have to be consistent and as many have stated you have to become their coach. Also observe their movements and make sure they are using proper form. Try to explain sloppyness or going through the motions could lead to injury. If they got results try to emphasize the more you move the better the numbers.

He had two visits in one day several times and thought for sure his second visit would show high bp numbers but they were lower because when the therapist came first that activity got the blood going and gave the nurse who visited later lower bp numbers. It's all about the circulation.

Although I knew the benefits of exercise and activity the senior here didn't until he started hearing the same thing from 2nd and 3rd parties-reinforcement. It's the right personality too, there were certain nurses sent out I know he liked better than others and he seemed to listen to them more. It took 2 incidents in one year with follow up home nursing and pt before they realized they have to get going. I remind them when they argue they had to be taken to the hospital 2 times in one year by ambulance for stuff they could've walked in and that seems to counter and temper their objections a little bit.

Some how you have to emphasize fitness & activity are part of daily life, not something to do. Also with the constipation try getting them to drink as much fluid as possible. I put extra ice in drinks so they get more water and I always keep a drink in front of them. Emphasize eating fruits. Also they say pain meds and some stomach meds can constipate people as well. Details count when figuring it out.

Stay consistent , Good Luck

Char, YOU become the cheering section. Observe the therapists' techniques and approaches, and imitate them. Granted, your mother probably won't be as responsive to you as she is to therapists, and she knows she doesn't have to.

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.

Have your mother's mental health issues been addressed?

She isn't really infirm. She is getting more disabled each time but I can see her thriving for years relying on a wheelchair and having us dress her and bring her food, as long as she doesn't sink into depression and refuse to get up. I hope I'm being pessimistic and the family stays in touch but what do I do if my worst fears come true? It's also very hard to watch this strong woman act as helpless as a baby, whining and crying all the way.

All I can tell you is that I asked the physical therapist the same thing and she said that if it was her parent, she wouldn't keep pushing to get her more active. She is not sleeping 16 hours a day like your mother, and I have cut down on pain medicine also, but unless I stand there, she will not do exercise, and even then fusses about it. If your mom will drink lemon juice and hot water in the morning, that will help with the constipation. Honestly it might be time to call in palliative care or hospice. Frustrating when you try to help but no cooperation.