Should I try to structure my mother's days?

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Should I try to structure my mother's days?

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Hello, my 94 year old mother suffers from Dementia, severe Bursitis, COPD and other ailments. Her doctor was reluctant to give her pain medication which she desperately needs to be able to walk, etc. Now her condition has worsened and she will sleep half the day away. By allowing her to sleep as much as she wants, I find myself cooking dinner at 9pm at times. She states that she hurts all over and is too cold to get up. I have to force her to get up most days. Should I let her sleep or wake her earlier to give structure to meal times etc. She just picks at her food when I do cook so at times rather than feel guilty, I will let her sleep which also causes guilt on my part.. Thank you in advance for your thoughts.

Care Decisions Family Caregiver Guilt Sleep Issues

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Yes to mealtime structure and yes to moving around as much as she can. If you can get her one of those seated pedal machines or have her do some seated leg lifts just to get her circulation moving, she will feel better and not be as cold. I would have to exercise with my father to get him to do it as he could not figure it out by himself. Tried to make it fun. On the other hand, he didn't have COPD.

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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

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Hi and thank you for your kind response. I am just curious is your mom in her 80s or 90s? Essiemarie

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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.

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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.

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Your mother should not be in pain, there are medication to help that are not so sedating. Her doctor should be advising you, if not get another doctor, a pain specialist for example. I feel bad for your poor mother in pain. Meal times planned is best in my opinion. I find routine works better for my mom. She was napping this afternoon and I woke her up for dinner. She was sleeping for three hours. I prepared her pureed foods while she was sleeping. All I had to do when she got up to eat was pop the pureed meal in the microwave. It takes me a quite some time to make a pureed meal, I want it to look attractive and taste good, so family all do the taste test. I would get her up in the morning for breakfast, nap late morning, up for lunch, nap afternoon, up dinner until bedtime. See how this works, then maybe a small nap in the afternoon only. Hope she has a comfortable recliner for the day time. Please address the pain issue with a pain specialist asap. Hope things get better for your mom. My thought and prayers are with you both.

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God Bless earlybird. And also to other's whose advice is well received. Thank you all.

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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.

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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.

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They should not allow your poor mom to be suffering with untreated pain. I agree that hospice might be the answer. At least look into it.

I think it's not a bad idea to get her up for meals, even if she doesn't eat much.

How to get her warmer? Can you turn up her heat, add a blanket, heavier sweater? No one likes to get out of their nice warm comfy bed so make it more appealing somehow.

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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!

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Oh, this sounds so familiar to me. I had a terrible time trying to convince the doctor to prescribe pain meds for my mother (now 87) - too many physicians are reluctant to prescribe for the elderly, and with the current push to "end the opioid crisis!" it's getting worse. In your mom's case, the doctor may also be wary of opioids because of the possible respiratory suppression side effects, which may exacerbate her COPD, and if she is taking meds for the dementia, the use of pain meds may be contraindicated.

I finally got the doctor to refer my mom to a pain management clinic. Mom was under their care for about a year, and when it finally got too difficult for her to travel, I found a new doctor who makes house calls (praise be!). He was also willing to continue her pain medication regimen, and adjusts it as necessary. As a result, Mom is in a lot less pain, though not pain free, but getting her the relief she so desperately needed helped a great deal in getting her to stick to a routine - and life became so much easier for both of us.

Everything depends on your mom's overall condition and prognosis for the future. If you think that she may regain some quality of life through pain management (they're experts in the field and may be best equipped to assess the risks and benefits), by all means question the doctor about it; otherwise, she may be a candidate for hospice, as others have mentioned. Best wishes.

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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

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Hi Julie, thank you for your kind words. I have decided to let my mother sleep until 2pm. I wake her and help her out of bed. Unfortunately I have severe physical pain as well and sometimes sleep as long as she does. Thank you and others for heartfelt replies. G od Bless!

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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.

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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.

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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.

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Your mom is lucky to have you! These are all great suggestions. We tried to do the same things for Dad but I wasn't as consistent because I didn't live with him and I think that is important. He took Tylenol 2-3 times/day for leg discomfort (prescribed by doctor). When he went into Memory Care, they were willing to be flexible on eating so he could sleep in if he wanted to. I think he slept out of boredom.

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I would insist on pain meds to help her quality of life If that is what she needs. Or find another doctor who works well with seniors. A geriatrician perhaps who will work with you on this issue. We keep moms meals on a pretty strict schedule along with her meds. She is on pain meds as well for her rheumatoid arthritis and most days is able to get up and get out of bed to enjoy a little of the day and evening along with the naps she needs. She also has dementia andCOPD.
If Mom didn’t have the pain meds she would likely be in bed all day long too trying to sleep through the pain.

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At 94, her body could be getting ready to shut down. My DH lived to almost 97 and he slept a lot and his appetite dwindled down to nothing.

Call HomeHealth (she should already be using it) and ask for advice. They see enough that they can tell you if Mom's body is starting to shut down. Also, if she's eligible for Home Hospice, they will see that she gets the pain management medications she is needing.

Doctors are so afraid of prescribing much needed pain meds for the elderly and the patients are the ones to suffer. It's not right. It happened to my dad and it's the reason he quit dialysis - they gave him 12 hour morphine but only 1 daily. Duh!

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Morphine slows down the heart. Often given to patients in hospice to help with breathing. When you are fragile, it can result in death. They will never say it is the direct cause, but it is certainly a participant. Wonder if she is on any over the counter pain killers.

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Essiemarie, you need to yell & carryon until her doctor gives her something for her pain. Staying in bed is harming her health. Make sure the doctor is aware that she is spending the day in bed because she hurts too much too getup.

Doctors are afraid to give pain medicine any more. My Papa’s doctor said he would get “dinged” if he gave him pain meds. He’s 92 and has several chronic pain conditions. That’s just the atmosphere today.

I hope you’re able to get her some relief soon.

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I have asked nurses and doctors this same question about my 100-year-old mother with dementia. Answer: let her sleep.

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It's true that sleep is a pain reliever.

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Talk to doctor again to request pain medicines. In my opinion, better to be able to walk as long as you can. With so much info out there about pain meds, most of the doctors are just eliminating it for all of the patients even though some really do need it to function. Unless the pain med has some sort of adverse physical or mental reaction, I don't see that it matters if someone at this age becomes dependent on it. (My parent cannot take any Rx pain meds because of severe constipation that seems to be far worse than the pain).

Rather than cook at 9pm, prepare things earlier and just heat up when she feels like eating. I'm not a big eater myself and time does not determine when I'm going to be ready to eat (which was a problem even as I grew up in a family that at breakfast, midday meal, and supper based on the hands on the clock). You could even prepare your own meals and freeze meals out of it for her to avoid trying to put something together when she does get hungry. Food can be one of the easier things you deal with as a caretaker.

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One consideration with sleep is if she has her days and nights reversed. If sleeping all day means she is up all night and by extension you are up all night that is a sign you should be trying for more structure and activity during the day. Mostly because that is not sustainable for you, and your well being is super important. If she is sleeping all night and all day I agree with other posters that it is likely a sign her body is shutting down and a hospice consult is a great idea.

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I would be demanding your mother have patches for her pain. It takes the angst out of situations with dementia patients especially. The patches are continually delivering pain relief, whereas it is a judgement call when to give oral meds a few times a day - and having to fight sufferers' increasing resistance to taking any meds at all. (I am being poisoned, how do I know it is the right medicine, my doctor did not say for me to have this, how do I know the nurse did not make a mistake, I have already taken it............). My mother is in advanced and progressive vascular dementia and Alzheimers and her pain seems to be better controlled after just a month on this type of treatment. I might add that her previous pain was sometimes from simply sitting in a wheelchair too long, or constipation, a pressure sore on her heel, headaches, vague arthritic issues. Patches are changed weekly. I wish you well, and admire you still caring for your mother at home. It is a herculean task.

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Try to arose her by some good smells of food - like bread or pastries baking.

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Another possibility is that your mothers body is winding down. Sleeping more and eating and drinking little can be signs the persons life cycle is coming to a close. Treating her pain could make her more comfortable in the mean time.

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Your mother is 94 years old and she has the right to feel these symptoms of feeling cold and sleeping all the time. She has illnesses, ailments and diagnosis. She’s very old and they tend to sleep longer and more as they age because of their body’s weaknesses and condition it’s in. It’s best to let her rest, and it’s best to wake her up when you prepare food for her to ensure she’s getting nutrition. Don’t feel guilty as you are doing your best to take care of her on a daily basis and you are there for her by already doing your part by cooking, monitoring her, watching over her. I think your guilt is coming from something else that is an underlying issue or just feel bad for her to see her this way. This is your time to you’re making up for it for any guilt you may have so be proud of yourself and just be there for her, be positive and make her smile for the last days and years of her life. Do not expect the doctors to prescribe her pain meds, trust their judgement on holding off on prescribed pain meds, narcotics are very strong and could harm her or knock her out to sleep for long periods and may not be recommended for her frail condition. Hope that helps.

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Should I try to structure my mother's days?

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