Should I try to structure my mother's days?

For my 100 1/2 year old Mom, there is comfort for her in having a "routine". She sleeps during the day but I wake her at the same times and have time for talking and engaging her in things etc. We have a morning routine, snack routines, lunch and dinner routines, bed time routine. They become like children who need the security of routine. She feels the cold more too so I put a (dry) flannel sheet in the dryer to get it really warm and then take it and put it on her, covering her with the other blankets on top. She loves that! Food has become difficult to chew so I make sure it is food that is ground in the food processor or soft and easy to eat. Lately she is lacking energy to even feed herself sometimes, so I help with that and she eats more that way. Guilt? Oh my, I think as caregivers to the elderly we live with this every day no matter how much we do!! Hang in there. You are doing well!

My mother has fairly good general health at 87, but MCI, little short term memory, mobility issues, painful joints from osteoarthritis, along with back pain and loss of mobility from spinal stenosis. I find a general schedule/routine works best with Mom, but there's a lot of flexibility in it. Mom may wake anytime between 5:30a and 8:00a and I start our morning routine when she does. I only wake her around 7:00a if necessary on adult day care days, but she's easy to wake by walking into her room and turning on a light. Mom rarely says she's hungry anymore but usually cleans her plate and might take up an offer of seconds on fruit or a sweet; she often comments on something tasting really good. Yesterday at lunch she didn't want anymore spaghetti but did take an extra cookie. Mom likes the Healthy Choice Steamers meals which I use to provide variety and something quick and easy when I'm not up to cooking when Mom's ready to eat. The evening meal is sometime between 5:30p and 7:00p. I usually cook for a 5:30 time, but if Mom is napping I don't wake her, just serve her meal later and sit with her sipping a drink while she eats. We always do the evening routine about 10 minutes after she finishes eating because Mom may be awake for a couple of hours or more or she might fall deeply asleep and I do not want to wake her from a deep sleep.

In addition to seeking pain medications, warm gel pack wraps with slight compression, gentle exercises through range of motion and massages can help reduce arthritis pain. In home PT was able to show us several gentle exercises done from a seated position (some using stretch bands) to help maintain range of motion and reduce pain. Focusing on reducing swelling as much as possible has reduced her pain levels and need for pain medications.

Is her doctor listening to all of her symptoms? I understand why he may hesitate to prescribe pain meds if she she up and walking around, because, she may be a fall risk, but, honestly having her in constant pain sounds horrible. I'd focus on treating her pain above all else. The constant pain can also cause depression and that may contribute to her sleeping so much and loss of appetite. I'd explore pain relief, including Hospice, if they think they can help.

Mom was 92, had cancer of mouth, had operation. Was on routine for 1 month then cancer came back, kept forcing her to eat, and get up etc. Finally called hospice and let her sleep when she needed, made comfortable. She passed in one week. My feeling is when death is near, there is more sleeping and no interest in food. The body is getting ready to pass. If it is just depression then I would push it. But it might be her time is nearing. Call hospice.

Dear Essie Marie, Since your mother is in pain and sleeping so much, I'd just go with what her body is telling her-at least she is comfortable. (Maybe until she can get pain medication), Structure is very good, but with all else considered, I'd err on the side of her comfort. My mother-in-law just passed, she was sleeping alot and not eating and was coughing (even on liquids). The doctor said when they sleep more,..it's a sign of the end. I hope whatever you decide, you have special talks and moments with your mother. Sincerely, Julie

I agree with calling hospice in for a consult.
Consider changing doctors or get her to an urgent care for pain meds. Also, just wondering about her thyroid. Has that been checked recently? My aunt, 93, gets very cold when her thyroid is out of range. Might be worth a check. And make sure she’s getting Vit D3 and her Bs.
CBD oil helps me with pain and anxiety. I have another aunt who has Parkinson’s. She’s been on hospice for two years now. My cousin started her on CBD oil thinking what would it hurt. and it helped her mom tremendously.
I personally would not be concerned about her sleeping except that being in bed too much can also cause pain.
Try to get her out on sunny days to sit in the sunshine. You could also massage her arms and legs to warm her. A mild muscle relaxer might help with the pain and cold. Let us know how she is doing. Hugs to you EssieMarie.

My mother didn’t have half of your mom’s problems but I couldn’t make her do anything!

She is fine now but had several months of depression, I guess, but was finally hospitalized for constipation which turned us back around.

She just quit getting up even to change wet clothes. She wasn’t interested in food either.

I would try to get her up gently at first but I would end up stomping my feet and shouting at her. I was so angry all the time, it was awful.

If she had been ill I could have handled it but it seemed she just gave up on life.

I FINALLY got family to help and she was picked up and carried to the car to go to ER. 

Following that She had in home pt but wouldn’t work with me on exercises. She still won’t but now she dresses herself every morning and makes her own breakfast.

In my frustration, I often wondered if I should just leave her alone and let her have her way because it wasn’t doing any good yelling at her and I didn’t like being so mean.

You have my utmost sympathy. I hope you get some good advice here.

charlotte

I would discuss maybe a house physician to come and evaluate her pain issues and why so much pain and what medications would help her. I also would give her Ensure or Boost mixed with protein powder for muscles and add fresh fruit and ice cream to this shake. That’s if she likes those. It takes less effort to drink a milkshake than chew food and she gets lots of protein and vitamins too.
house doctors can be located by using google online or asking her insurance company if they cover such services with an assessment done by her primary physician. I found them very helpful for my mom . As far as a schedule goes, she sleeps because she’s bored. Maybe have some interaction and try to encourage the Memory game or play cards. Let her fold simple laundry, invite a relative or friend over for a visit , show old pictures and talk about the happy times and places she visited. I’ve worked Alzheimer/Dementia clients for 32 years and sometimes it’s a challenge but getting her motivated and out in the fresh air when warm is all good. Caregiving is a long sometimes hard to bare when you try so hard to be positive and want the best for your loved one. Keep active yourself even if it’s a short walk or a chat with a friend. I hope I’ve given you some ideas that might answer your concern.

I agree with Sunnygirl1. If she is 94 and in pain, I think I would be inclined to ask the doctor if it's time for hospice care. Most people don't call them soon enough! Hospice can help her be comfortable during her remaining time. They emphasize comfort, eating just as the patient wants (no force feeding), have home health aids to assist with bathing, visiting nurses, etc.

I’m no expert, but my mom is 100 and has dementia. I let her sleep the day away sometimes after her demented period of semi awake constant talking, chanting, screaming, wandering & paranoia that can last from 2-3 days. She needs that 24 plus hours of undisturbed rest so her body and especially her brain can reset. She will then be relatively normal for 1-4 days( this stage of the cycle is getting shorter recently). But the brain needs to rest. So don’t feel guilty. Just monitor her breathing and play catch-up with meals and meds as best you can. It’s been working for us. Good luck.