Problem with getting Mom out of bed

Janet44

  Hello

This is my first time on this site. I am the sole caregiver for my mother. She is 91 years old and was diagnosed about 4 years ago with dementia. She has been living with me for about 3 months now. She remains totally mobile, but can never be left alone and has absolutely no short term memory. I have a million questions and things I would love to talk about, but I will begin today with my biggest concern and frustration. I welcome any input, suggestions or related experiences. To all of you out there caring for or dealing with a LO with Alzheimers, this is HARD!!

My first problem is getting my Mom out of bed, in the morning. She goes to bed about 8:00pm and I begin trying to get her up around 10:00am. It is a struggle every morning. She begs and pleads with me to let her stay in bed. After 14 hours in bed, I have noticed if I don''t get her up she begins the day totally disoriented, confused, anxious and does not know who I am or where she is. This state many times results in tears. I find that the longer I let her stay in bed, the worse these episodes of disorientation and tears, become and they last longer. I call them meltdowns. If I can get her up at around 10:00am, the day begins a little bit smoother. I feel so horribly mean and guilty, pulling her out of bed. If I let her, she would stay in bed all day. I welcome your feedback on what is the best avenue to take with this issue.

Thank you

Jo C.

Hello Janet and a very warm welcome to you.  This is indeed quite a challenge and I can imagine how frustrating this must be.

Having dementia is one thing, however; the body still has multiple systems that could be impacted upon by other factors.  First question would be, what medications does she take at bedtime or just before bedtime?  Sometimes, even if a Loved One (LO) has been taking a med just fine for some time, there can be a sudden change and the med can become problematic causing negative outcomes.  (Of course never stop meds without doing it under the supervision of one's doctor to avoid preventable risk.)

Could she have one of those "silent" urinary tract infections that happen so often but go undiagnosed?  This is common for many of our LOs; these UTIs are called "silent," because there are no complaints of pain or burning, but there are most often changes in behavior and/or function and/or cognition. The UTIs can also cause severe weakness and other changes for some.  It is best to have the doctor order a lab test that includes a culture and sensitivity.  The test strips that can be done at home have a high error rate for false negatives as well as false positives.

She could also have other health issues that perhaps the doctor would want to do a check up and screen for issues and also by doing a full menu of labs to rule out anything causing or contributing to the oversleeping and fatigue.

Does your mother have arthritis?  Could it be that it is very painful for her to get up in the morning?  If she has arthritis, does she have any meds to assist with the pain and stiffness?

Sometimes, our LOs have changes that happen with the dementia, but it is always a priority to rule out anything physical first before attributing changes or problems automatically to dementia.

You are right; being a caregiver is really hard.   You are a very good advocate for your mother by reaching out for information and input; she is really blessed to have you by her side. 

NOTE:  The Alzheimer's Assn. has a 24 Hour Helpline that is available 365 days a year.  It can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are wonderfully supportive, have much information and can often assist us with our problem solving.

Please let us know how things are going and how you are doing, we will be thinking of you..

J.

Janet44

Hello J

I cannot thank you enough for your supportive and very informative response to my message. 

My mother was in an Assisted Living Facility for the past 1 1/2 years, prior to coming to live with me. She was depressed and suffers from severe anxiety. Being in a facility, in lock down, during a year of Covid, made her suffer all the more. The staff never encouraged her to get up, they left food in her refrigerator and left her alone. She stayed in bed ALL day while she was there. She is on a depression drug, once a day and anxiety drug 3x a day. Due to the problems I have explained, regarding her staying in bed, I recently changed her medication to be taken at night, instead of in the early morning. I thought this might be part of the problem with her waking up. 

We have an appt. next week, with her primary doctor to check her for a UTI and also with her psychiatrist to go over her medication. 

I am sure she has some arthritis and stiffness, but I don't believe it it hindering her from getting up.

I did a "test" on her today. She went to bed at 8:00pm, last night. I told myself I was going to leave her in bed today and let her stay as long as she wanted, without pushing her to get up. As the morning and afternoon wore on I think I became more anxious and at 2:00pm, I went in and encouraged her to get up. She began to cry and asked me "why did she need to get up, there was nothing to get up for". She eventually got up, had some lunch and has remained sluggish and confused today.

Again, thank you for your support. It was good to know someone was out there that understands what I am going through and let me know I am on the right track.

Best Regards

Janet

towhee

Janet, when she doesn't get out of bed is she getting breakfast in bed? How long is there usually between meals and hydration, between dinner and breakfast? It could be that she is getting a little dehydrated, or has some low blood sugar, or her medication is building up in her body and not being eliminated as usual. Any number of things. Bring this up with her doctor?

Janet44

Thank you Towhee for your response. 

My mother drinks and goes to the bathroom a lot, during the day and night. She does not eat, unless I force her to get up and have something to eat. I agree she could have a problem with her blood sugar. She could go anywhere from 17 hours without food, if I get her up, or like today, when I let her stay in bed, it was 20 hours.   I will talk to the doctor. Do you think I should force her to get up and eat or let her stay in bed or should I bring her food in bed?

Thanks again

Janet

M1

Hi Janet and welcome. I'll play devil's advocate-why not let her stay in bed if she wants to? Are you thinking she'll become more debilitated if you don't get her up? Or that it will hasten her demise?  I'm wondering if you've considered a hospice evaluation.  Their perspective might be useful to you in sorting it out. No easy answers, but I would think that her comfort is top priority. There comes a point at which the only relevant question is whether she's distressed or not. Good luck-

MN Chickadee

My LO's issue has always been more energy than we can deal with or her body can deal with, but just wanted to say that a friend of mine caring for a PWD found that medications can play a big role in this. Her LO was sluggish and did not want to get out of bed. They changed the anti-depressant she was on, and it was like a light switch turned on. She was more animated and energetic. I would say you are on the right track to see both the PCP and psychiatrist to see if there is any intervention you can make like a change in medication or treat an infection. If that doesn't turn anything up, I agree a hospice evaluation might make some sense. At a certain point you have to weigh the distress it causes her to be up and about with what is gained to force it, and figure out what makes her the most comfortable. I'm not clear what stage your mother is in, but perhaps you could look at the waking up routine to see if you can positively affect that;  maybe there is a way to help her ease into the day in a way that won't overwhelm her. Taking it slowly. Opening the blinds little by little, her favorite music, a little hand massage, talking about things to do that she might enjoy. Sensory input can be affected so it might feel strange to her to be woken. Hugs to you, this disease is indeed hard.

towhee

So she is drinking but not eating, could also be low sodium. I would not force her to do anything, but I think you said she is mobile and going to the bathroom on her own? Call and talk to your doctors office and get their approval but if she is going to the bathroom at 7or 8am you might get her to drink part of an ensure before she goes back to bed. You could also try breakfast in bed, but you need to have her positioned correctly so she doesn't choke/aspirate and leave her propped up in the bed for about 20 minutes after she eats. Talk to your doctor. Also, I would make notes for the doctor about how much she eats and drinks and when. The hope is that she would feel better and be more accepting of getting up. It's a long shot. There does come a stage where our loved ones simply won't eat or drink, when small interventions don't work. We all come to our own terms with that.

Jo C.

With the additional information, it seems that you are on the right track getting both primary MD and her psych specialist appointments. She may well need some medication adjustment.  Depression and anxiety is certainly a huge problem issue and one that is so very uncomfortable and colors everything.   Step by step all the possible issues can be ruled out.  I would insist that the primary MD does indeed order a complete menu of labs to rule in or out any system issues.  In this, ask that the doctor also has Vitamin D an B levels checked along with other measures. The lack of nutrition and fluid may well also be impacting on the end results you see in regard to your mother's condition.

Hospice has been mentioned by others.  Medicare does cover this.  In Hospice, one must have six or less months of life left (that is something variable in most Hospice organizations when dementia is present); and one also no longer seeks acute medical care and no ER or hospital care.

If one does not fit this category or if it is not one you would wish for at this time, there is also Palliative Care.  In this model of care, the person is in decline, but has longer to live and one can also continue to have acute care even at the acute hospital level.   In Hospice, equipment is provided at no cost including a hospital bed if necessary; Palliative does not do this. There are more visits and oversight with Hospice, but Palliative can be very helpful. Each can assess for the need for a bath aide to come in several times a week which can be very helpful for the caregiver.

If your mother continues to insist on staying in bed after the medical and psych input, then it becomes a quality of life issue for your dear mother.  She can get up to the bathroom as you have stated, that is good.  Being in bed, be cautious to inspect her skin for potential breakdown.  Also, one could have a hospital bed brought in; have this covered by Medicare, she would have to fit criteria for one and it must be ordered by the doctor; this can be done.  If she is in a hospital bed, I would want one that lowers almost to the floor for the ease of her getting in and out of it.  If she has the hospital bed, then she could stay in bed, and the back could be raised so she could sit up and eat and also to sit up and watch TV is she has one in her bedroom.  Perhaps being in bed is her absolute security.

You will find your way with this, and the quality of life issue will in all probability be driving the train once she has been seen by the healthcare team.

Do offer her what she likes to eat or drink; doesn't matter if it is not what we would eat at a meal, just getting some nutrition in and hydrating would be good if she will accept that. Some of our LOs, after they have reached a certain point, refuse food and fluid - if that happens, then Hospice may be a good support for both of you.  They are pretty wonderful in all they do and are so much help.

Also, the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  The Helpline is open 365 days a year.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are great support for the Caregivers, have much good information and can often assist us with our problem solving.

Do keep us posted on how things are going,

J.

Marta

Janet. Could it be that your mother is ready to die?  Of course, WE are never ready for that. 

Does she have a living will, wherein she makes it known what her wishes are if she is near the end of her life?  If there is no such document, do you have a sense for what her wishes would be if she could tell you, just based on you having known her all your life?

Something to consider. 

Janet44

Hello ALL

Thank you all ever so much for your invaluable support, opinions and information.

I realize now that I should have given a lot more information on the stage of my mother's Alzheimer's. 

I believe my mother to be in the middle/moderate stage. She is still able to dress herself, feed herself and walk 2 miles, on a good day. She is able to get herself to the bathroom and eats at least 2 large meals a day. She loves her sweets. She has no short term memory. She does not know her address, phone number, day of the week, or month or year or the names of her family members, but she still knows who she is and for the most part, who I am. She repeats her questions repetitively and is unable to retain recent events. She has macular degeneration, so she is unable to read or watch TV. 

I am looking forward to our trip to the doctor and psychiatrist, as I am wondering if her desire to sleep all the time has much more to do with her depression or possibly a medical condition I am not aware of.

Again, thank you for your support.

Janet

search4innerpeace

Janet,

I am going through the same thing with my mom.  She is in the middle/late stages and can no longer walk or complete her own personal cares.  All mom wants to do is sleep and says there is nothing else to do, wants to die, and always feels tired.  When encouraged to get out of bed, she will yell, hit, etc.  So it is hard to figure out and what we are trying to think through-is it worth her getting so upset, what could happen if not getting out of bed, finding that balance, and where the quality of life is at.  Sorry I do not have answers other than I know what you are going through.  

Janet44

Thank you Search4InnerPeace for your response to my post. 

It is sad that we find comfort in other peoples struggles, but just knowing that there are others that share my struggles and frustrations, somehow makes me feel better. It seems to be such a fine line between wanting to push our LO to do what would seem to be better for them vs just allowing them to stay in their safe place, which for my Mom, is in bed.

Thanks again for sharing.

jfkoc

Just a thought....is there incentive to get out of bed? Perhaps a little music, singing, dancing...or mom, can  you help me with ......

Janet44

Thank you for your suggestion.

It's nice to know I am on the right track. I have tried ALL those things. I think my singing and dancing makes her want to stay in bed all the more. LOL

search4innerpeace

Janet, you are welcome!  You are correct, it is such a fine line and because everyone is their own individual and every situation is unique, it makes it more challenging that there is no one size fits all.  I do keep trying different things and attempt, everyday is different and you never know when a strategy might be successful.  I love that you sing and dance for you mom