Lately my mom comes into my room when I’m sleeping. She wakes me & starts asking questions. She can’t hear my answers so it’s pointless to answer. I don’t understand this. She seems to be getting worse.
None of us are experts on dementia! We learn thru scar tissue what's going on, and by reading this forum and recommended materials others have given us. It saddens me that any of us are in such a position to begin with, to HAVE TO learn what we can and then sort thru the huge amount of info to see what applies to our loved one. It's maddening.
Dementia is a disease of progression, meaning mom will continue to get worse as she approaches the end of her life. Her actions defy logic, they're senseless, because her mind is no longer working properly. She's likely wandering around at night, as is common with dementia in the later stages, then getting confused and coming to you with questions. This may go on and on, or may never happen again.
Toward the end of her life, my mother was restless and agitated (Sundowning) every day in the late afternoon and on. Ativan helped relax her quite a bit. She stopped looking everywhere for her dead siblings she insisted were hiding from her
I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
She has dementia, what exactly were you expecting?
She most certainly is getting worse and will continue to do so for the rest of her life.
You said her insurance is your income, what are your plans when she dies (assuming you don't die first from foolishly trying to be a sole caregiver, which is a very real possibility) and that source of income is gone?
Each situation is different but basic information is needed. This sounds like sundowning - mom doesn't understand that its time for sleeping. Have her doctor check her out she may need some help sleeping during the night. Getting into a routine should help too. Winding down as the evening begins, no screen time, if she likes to read have her read a magazine or book. Rubbing a lavender scent lotion on her skin - if she is not allergic- or have a scented packet near her bed so the aroma could help soothe her. Reading this site and anything on ALZ.com and dementia will help you. Remember to think outside the box and just because one thing doesn't work try something else. Blessings to you and yours.
It sounds like you got the short end of the stick huh? Plus it sounds like you really haven't educated yourself enough about the disease of dementia, because if you had none of what your mom does or doesn't do would surprise you. And you would know that yes, she will only continue to get worse. To me it seems that it may be better for you to place your mom in a memory care facility where she will be around other folks her age and will receive the 24/7 care she requires. And you can get some much needed rest, and a job that you actually enjoy and won't get so "overwhelmed" with. It sounds like the only reason that you have taken on moms care is for the money that her LTC insurance provides for you and the fact that moms money helps pay some of your bills. That's why I made the comment about drawing the short end of the stick, as I think you are now realizing the reality of what it takes to care full-time for someone with dementia. It's very hard, and will only get harder. You say that you're in it for the long haul, but are you really? Even at the risk of damaging your own health and mental status? And you know that someone with Alzheimer's can live with it for 20+ years right? Do you have another 11 years in you to care for her? There are other options out there not only for your mom, but for you as well as far as employment goes. I'm sure your mom would not want you killing yourself(literally)because of her if she were in her right mind, so please do what is not only best for your mom but for you as well.
You’re right. I do need to educate myself on dementia. Guess I’ve been working hard instead of smart. Education is an easy solution. Thank you for your helpful comments.
overwhelmed622, you mentioned you are in for the long haul for caregiving. Please note that up to 40% of family members who are caregiving die leaving behind the person they were caring. Those are not good odd. Then what? Who would take care of your Mom.
Also mentioned was "long term health insurance provides my income". May I ask if this is in a form of a regular paycheck with payroll deductions for social security and medicare? Are you being paid for 1-shift even though you are actually working/being on call for 3-shifts? Have you figured out your hourly rate?
As for your Mom seeming to be getting worse, maybe it is time to see if she has an Urinary Tract Infection [UTI]. Such an infection can cause all types of different behaviors. Her primary doctor can do this test. For quicker results, an Urgent Care. If it isn't a UTI, please note, as others here had mentioned, with dementia it only gets worse, never better. www.agingcare.com/topics/8/dementia-behaviors
Your profile says your Mom is "88 years old, living in my home with age-related decline, alzheimer's / dementia, arthritis, hearing loss, and osteoporosis."
and that you are committed to in-home caregiving of here "for the long haul".
I assume you are her PoA? And I also assume she has a medical diagnosis of dementia/ALZ, memory impairment so that your PoA is active?
If you are not her PoA and later down the "long haul" you experience burnout and want to transition her to a facility and she resists, this would be a problem. Also, is your home ADA compliant? Does she have enough funds to hire help if she becomes less or immobile? Someone to turn her in bed?
The "long haul" can include a lot of scenarios that are sometimes unimaginable right now and impossible to live with. Just encouring you to be prepared. Make sure you know what her medical issue is and that you are educated all about it so that you know how to interact with her and know what might be coming.
" I don’t understand this. She seems to be getting worse."
If she has dementia, the only predicatable thing is that she *will* get worse and worse. Talk to her doctor (if you are her MPoA and/or her Medical Representative.
You may not have reached complete burn out yet but if/when you do it's better to have a plan B in place. You are going to have to figure out how to survive financially once she dies so I suggest you can figure it out now instead, and I say this as someone who also relied on what my mom paid me and had to find emergency placement when I just couldn't do it any more.
I echo what NeedHelpWithMom wrote. Have you considered facility living for your mother?
You need a good night's sleep.
How long has your mother been living with you? Why is she living with you? Your name says it all -- "overwhelmed." Do you have a family? Did you give up a job to take care of your mother?
We’ve lived together for 9 years. I agreed to care for her if she would help with living expenses. Plus her long term health insurance provides my income. So I’m in it for the long haul. Thank you for your encouragement!
I’m so sorry that you are going through this situation with your mother.
You must be exhausted from being woken up during the night. I’m sure that this is frustrating for you. Of course, you are concerned about your mother’s behavior.
Have you spoken with your mother’s doctor about this behavior? Perhaps calming meds may help her to relax and sleep through the night.
How long has she been living with you? Have you considered placing her in a facility where others will do the caregiving so you can get the proper rest that you need?
If you decide to place her you can be her advocate and visit her as much as you like.
Dementia is a disease of progression, meaning mom will continue to get worse as she approaches the end of her life. Her actions defy logic, they're senseless, because her mind is no longer working properly. She's likely wandering around at night, as is common with dementia in the later stages, then getting confused and coming to you with questions. This may go on and on, or may never happen again.
Toward the end of her life, my mother was restless and agitated (Sundowning) every day in the late afternoon and on. Ativan helped relax her quite a bit. She stopped looking everywhere for her dead siblings she insisted were hiding from her
I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Best of luck, my friend.
She most certainly is getting worse and will continue to do so for the rest of her life.
You said her insurance is your income, what are your plans when she dies (assuming you don't die first from foolishly trying to be a sole caregiver, which is a very real possibility) and that source of income is gone?
To me it seems that it may be better for you to place your mom in a memory care facility where she will be around other folks her age and will receive the 24/7 care she requires. And you can get some much needed rest, and a job that you actually enjoy and won't get so "overwhelmed" with.
It sounds like the only reason that you have taken on moms care is for the money that her LTC insurance provides for you and the fact that moms money helps pay some of your bills.
That's why I made the comment about drawing the short end of the stick, as I think you are now realizing the reality of what it takes to care full-time for someone with dementia. It's very hard, and will only get harder.
You say that you're in it for the long haul, but are you really? Even at the risk of damaging your own health and mental status? And you know that someone with Alzheimer's can live with it for 20+ years right? Do you have another 11 years in you to care for her?
There are other options out there not only for your mom, but for you as well as far as employment goes. I'm sure your mom would not want you killing yourself(literally)because of her if she were in her right mind, so please do what is not only best for your mom but for you as well.
Also mentioned was "long term health insurance provides my income". May I ask if this is in a form of a regular paycheck with payroll deductions for social security and medicare? Are you being paid for 1-shift even though you are actually working/being on call for 3-shifts? Have you figured out your hourly rate?
As for your Mom seeming to be getting worse, maybe it is time to see if she has an Urinary Tract Infection [UTI]. Such an infection can cause all types of different behaviors. Her primary doctor can do this test. For quicker results, an Urgent Care. If it isn't a UTI, please note, as others here had mentioned, with dementia it only gets worse, never better. www.agingcare.com/topics/8/dementia-behaviors
and that you are committed to in-home caregiving of here "for the long haul".
I assume you are her PoA? And I also assume she has a medical diagnosis of dementia/ALZ, memory impairment so that your PoA is active?
If you are not her PoA and later down the "long haul" you experience burnout and want to transition her to a facility and she resists, this would be a problem. Also, is your home ADA compliant? Does she have enough funds to hire help if she becomes less or immobile? Someone to turn her in bed?
The "long haul" can include a lot of scenarios that are sometimes unimaginable right now and impossible to live with. Just encouring you to be prepared. Make sure you know what her medical issue is and that you are educated all about it so that you know how to interact with her and know what might be coming.
" I don’t understand this. She seems to be getting worse."
If she has dementia, the only predicatable thing is that she *will* get worse and worse. Talk to her doctor (if you are her MPoA and/or her Medical Representative.
You need a good night's sleep.
How long has your mother been living with you? Why is she living with you? Your name says it all -- "overwhelmed." Do you have a family? Did you give up a job to take care of your mother?
Thank you for your encouragement!
You must be exhausted from being woken up during the night. I’m sure that this is frustrating for you. Of course, you are concerned about your mother’s behavior.
Have you spoken with your mother’s doctor about this behavior? Perhaps calming meds may help her to relax and sleep through the night.
How long has she been living with you? Have you considered placing her in a facility where others will do the caregiving so you can get the proper rest that you need?
If you decide to place her you can be her advocate and visit her as much as you like.
Best wishes to you and your mother.