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Bengentleben Asked March 2019

My mother (85) lives with me. She can do a lot for herself, but won’t try to make own small meals. How can I set her up so I can take respite?

She won't make her own meals like, sandwiches, toast or coffee. I would like to make plans for my husband and I to take a weekend trip together. My mom moved in with us after her neck surgery. A nerve was damaged and she couldn’t lift her left arm. It’s been a year and 1/2 now. Her arm is back to normal. She can wash and dress herself. She walks with a walker and moves along fairly well. I make sure she has breakfast, lunch and dinner, I wash and lay her clothes out every day and manage her medications. I manage her doctors appointments and also take her to them. I have learned that she is not self motivated and will wait until I ask her if she wants to go to a movie or out to a store. Since she’s moved with us, she hasn’t stepped out of the house for fresh air unless I ask her or she has a doctor's appointment. I don’t expect her to change but I would like some input on ways I can set her up for a few days while my husband and I take a day or two away. Setting up her clothes is easy but getting her to fix her own toast, sandwich or heat up a dinner is questionable. I can have my daughter check on her but I really need her to do some of these things herself. Especially when I know she can. It took her a year to adjust and mentally settle. She’s moved from Philadelphia to Texas. Which was a huge change but, she asked to stay. We welcomed her with open arms and put a good bit of money in to make things comfortable (bed, new toilet, chair, pull out drawers for easy access, bars for the tub etc). I think she has gotten so use to me doing everything that she doesn’t want to try. She tells me the coffee maker is to fancy or she doesn’t know how the water dispenser works. She almost coughed herself to death once and didn’t think to get up and get water from the sink, frig or the dispenser! Any advise will surely help.


PH

JoAnn29 Mar 2019
Your profile says Mom has ALZ/Dementia and is incontinent. Sorry, but I don't think she should be left alone for a few days. The coffee pot may be complicated to her and showing her may not work. Maybe she has forgotten how to make a sandwich or heat up her food thats why she allows u to do it. My Mom forgot how to cook a turkey dinner that she had done for 50 years. She forgot ingredients when she baked, been baking for 70 yrs. And this was in the early stage of her Dementia. Later it was not knowing how to use the TV remote or the cordless phone and leaving a pan on the stove. As the disease progresses, they are more comfortable in their own little space. Mom lasted no more than an hour out and was ready to come home.

And the incontinence, how is she going to handle that?

I would see if there is an AL near you were Mom can stay while u get away. Yes, it will cost but you will have peace of mind.
Bengentleben Mar 2019
Thank you so much! This really helps.
Countrymouse Mar 2019
It might be time to revert to the childhood lessons your mother maybe gave you! Ask her directly to help with specific tasks, under supervision, gradually increasing the range of them until she's got her confidence back.

I remember well that it is quicker and easier just to manage these routines by yourself and not wait for your elderly mother to take all day to fix her breakfast porridge (guilty!) - but the downside, as you've discovered, is a loss of confidence and a sort of learned helplessness. It sounds as though that's what you want to try to reverse.

You may discover, of course, that for reasons unrelated to the nerve injury she actually is losing some of these abilities; but in that case you need to know about it so that you can arrange different support for your mother. I completely applaud your thinking about proper respite breaks for you and your husband, though.
Bengentleben Mar 2019
Thank you so much! My mom mind is strong but she is forgetting her words. I look at our situation and see this is the best time to plan. But, definitely not leave her alone.

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AvaC42 Mar 2019
I wondered why my Mom stopped cooking and doing other things for herself too. It seemed to happen overnight but, in reality, there had been changes in her routine/behavior that I just hadn't noticed. Looking back now, I realize these changes were because of her cognitive decline. Either she didn't remember how to do things or they became too complicated, even if there were directions on the box. I tried the frozen meals but when I realized she was forgetting they were in the freezer, I knew something had to change. She loved to make chocolate chip cookies - they were her signature baked item. When she stopped making them too and that's when I knew she was really struggling. She would never say that, though, so it was by observing her in the kitchen that I knew she could not handle cooking or baking anymore.

I, too, thought maybe I was just doing too much for her - making it easy to stop doing for herself. I know now, though, that she was either confused or afraid to try because she wasn't comfortable - even in a kitchen that she had cooked/baked in for almost 60 years. You mentioned about your Mom's coughing and not thinking about getting up to get a drink - that is a good indication that she isn't able to think things through like she used to.

It is so hard for us to realize this is what is happening because this isn't the person we once knew. But, as difficult as it is for us, I can't imagine how it must be for the person who is changing. In her more insightful moments, my Mom would be so sad recognizing she could no longer do the things she always did. I, then, would wish she could just simply forget. My niece called it "dementia purgatory" which is an apt description. My lesson from it all was to try and put myself in my Mom's shoes and practice patience as that is what I would hope for if I ever found myself in the same position. Best to you and your Mom, I give you a lot of credit for taking such good care of her.

mmcmahon12000 Mar 2019
Hire an in home caregiver. That'll give you the respite you need for your trip. Leaving your mother alone for a few days would not be a good idea. Especially when it comes to her meds. Look into Visiting Angels. We used them and they were wonderful.

dads1caregiver Mar 2019
My FIL lived alone & he got to the point that he wouldn't fix anything to eat. I started making 3 weeks worth of simple meals & put them in individual containers. I labeled each one w masking tape. Most would go in freezer. When I would go visit, I would move 3 meals out of freezer to frig. FIL would eat cereal for breakfast and would heat meal up each day. This worked for a year & half until a full time caregiver needed to be employed.
NeedHelpWithMom Mar 2019
Dad’s caregiver, I love to cook and freeze in portions. Really does help.
polarbear Mar 2019
My mother is 82 and has Alz. She doesn't remember any name of any food or what they taste like or even how to eat them. So, making food is out of the question for her.

Your mother at 85 and has Alz among other things according to your profile. She may not be as bad as my mother, but I would not be surprised if your mother has forgotten how to make food that she knew how her whole life.

My mom's taste buds also changed drastically. She drinks mostly nutritional shakes. Throughout the day, she likes to munch on sweet things, but only a couple bites here and there. So, we have a row of small containers of various snacks like crackers, cookies, cereals, etc. for her to munch on whenever she wants.

I agree with other posters that your mom should not be left alone. You need to hire a sitter to stay with her so that you can go out, take vacation and have a life.

My family hasn't gone on vacation for 3 years. Now that my mom is not with me 24/7, I am hoping we can get away for a few days to play with snow before winter is over.

I think you have to adjust your expectations of your mom. Otherwise, you will continue to be disappointed and angry.

I wish it wasn't this hard with sick and aging parents, but it is and it could be worse.
Bengentleben Mar 2019
Thank you so much. Great information. It really helps to read others stories and experiences.
HospiceRN14 Mar 2019
It sounds as though she may have the beginnings of dementia. I don’t recommend leaving her home alone. I would check into having family care for her or if there is no family then private caregivers. I don’t know what health conditions she has, but it’s possible she could qualify for hospice and hospices do offer respite stays at facilities usually available once every 2-3 months. It’s also possible that she is depressed. I suggest discussing the things from your post with her Dr. I hope you’re able to find someone to care for her so that you can get a break!
Bengentleben Mar 2019
Thank you
So many post have been very helpful. Thank you for yours. I have access to help right at hand but I didn’t think about it until I read posts like yours.
I plan to have my daughter stay with her if I need her. She would be great and someone my mom knows.
rocketjcat Mar 2019
Her inability to take initiative for her own benefit shows that she should not be left alone. It’s too risky to think she will make her food, drink her fluids, take her meds, toilet herself and keep up her hygiene while you’re gone. But even more concerning is what would she do in an emergency? Can you say with 100% certainty she would be able to call 911 or would she be flummoxed and do nothing? Can your daughter stay with her while you’re gone? Could she stay with your daughter?
Bengentleben Mar 2019
Thank you, thank you!!
This is truly food for thought!
MAYDAY Mar 2019
Mom cannot be left home alone for that long. ASk doctor office if they have caretakers or know of someone.

check with local adult day care centers or hospitals about caretakers or friends if they know anyone.

Meals on wheels/ volunteer organizations. You are in a tough spot.

She needs more daily care. Don't plan her to make food now. Ask doctor about palliative care.

Enroll her in adult daycare a few times a week.

You take care, breathe.
shad250 Mar 2019
She needs a man
crzyhorseldy Mar 2019
bengentleben-
I am in a similar situation with my husband. He has Parkinson's and there is a form of dementia that comes with that. I am an active, healthy 68 yo and ride horses at least four times a week. My passion is showing these horses in reining competition. We recently moved to a smaller house/acreage in a new town. I have scheduled horse shows about once a month. I contacted one of the local home heath providers and we worked out a plan for a caregiver to come on the weekends that I am away. She comes in for 11/2 hours in the mornings to help him dress, get breakfast, meds. I cook and leave meals in the fridge for him to microwave for breakfast lunch and dinner. Thankfully, he can still do that. I always go over how to use the microwave before I leave. He is usually fine during the day, mostly just sleeps. The caregiver comes back in the evening around 8 and stays until 9:30 to help him get dressed for bed (he is incontinent at night and requires a diaper which he can't get on by himself). I have taken two weekends so far and (fingers crossed) this has worked out well. My two sons live about 15-20 minutes away and one of them will usually come by and check on him on Saturdays. I have to have this respite to maintain my sanity and you should too. Check into primary home care providers in your area. I have to pay a little more because of the abbreviated schedule but it is sooo worth it to be able to get away, worry free (almost). Also, since he takes meds 5 times a day, I bought a device that dispenses his pills on schedule. It is locked, and there is an alarm that sounds when it's time to take the pills. Also have a back up alarm on his phone in case he can't hear the pill box alarm. Have used this for around 18 months and it works really well. Conditioned responses are still possible in people with dementia, I guess. Good luck and prayers to you. Take care of YOURSELF!!
Bengentleben Mar 2019
Thank you so much.
Your post is very helpful. The pill timer is a great idea too. My mom complains of dry mouth so she wants to take her medication before 3:00pm. I’ve been putting her evening pills with her lunch pills. She knows the difference and will take her evening pills in her room to take later. The problem I’m seeing now is, she’ll drop pills on the floor. This worries me because, we have animals and grand children (They know better but, you never know.) Time for me to regroup! So your post is a good help.
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