I feel so overwhelmed

KellyLea · September 2021

My mother came to live with me in April of this year. She had previously lived with my younger sister until I received a call stating my mother was trying to kill her. Because I had been estranged from my mother due to my younger sisters lifestyle choices and my mom’s enabling, I had no idea what my mothers mental/physical status was.I knew my mother was not capable of any form of violence and that something else was going on, It turned out that my little sister managed to get her biological father to move in with her on the condition my mother moved out. I decided to take her in. My plan was get her back on her feet financially and find a place of her own (all of her savings and retirement was gone due to paying for my sisters opioid habit.) When my mother arrived at my house with all her belongings in garbage bags that smelled of stale smoke, I knew immediately she wasn’t the mother I remembered. She was filthy and hadn’t washed her hair or cared for herself at all. I had to take her to cut all of her hair off because it was so matted. Her toe nails hadn’t been cared for either. She was reluctant to show me her feet. It turned out her toe nails were so long and thick that they changed shape and she wore her tennis shoes round the clock in order not to feel them. I took her to see a doctor in order to assess her health and started her on an anti-depressant. After a few weeks, I noticed she had trouble remembering our conversations and kept asking me the same questions. From there it has gotten worse. She waits for me everyday to come home from work and follows me everywhere I go. Even I go to get a glass of water from the kitchen, she is right behind me. I ask her why and she will make up some excuse, She is also very confused most days. I took her to a neurologist who gave her the assessment test and told me she did well and to come back in 3 months for a follow up. He ordered a CT scan and I was told they found nothing unusual. In the meantime, I am struggling. It is so hard to hold in my frustration and not take it out on her. She can care for herself, but only when she is reminded to do things like bathe or take her medicine. I am working on a plan to deal with the memory issues because I want to keep her with me as long as I can. She does have good days where she acts like her old self and she has shown no aggression or anger of any sort. I feel like I am going through this alone. I have begged my other sister to at least come and see her or even take her for the weekend, but she refuses. She says she can’t handle it and her solution is to put her into assisted living.

DrinaJGB · September 2021

You indicate that she is very confused and was filthy upon arrival to your home--then you say she is able to care for herself. This seems completely contradictory.What you are describing is a very confused woman with some form of dementia--and that she is not able to care for herself AT ALL.

I would not leave her alone. Ever. And I would find another neurologist ASAP.... to completely assess her cognitive functioning level. A neuropsychologist would give you an overall picture of that. The behaviors are indicative of cognitive decline--possibly later stages.

It is perfectly normal to be in some sort of denial regarding a loved ones decline. We all do it in the beginning.It is a stage of grief for the loss of the mother you once knew.

You do not want her to be so impaired, but it sounds as though not only is she seriously impaired, but has been for some time.Good luck.

dayn2nite2 · September 2021

I don't think you have accepted that she CANNOT care for herself unless you are prompting her. But that is reality.

You need to determine whether you can continue to care for her in her condition (which will only get worse, to the point where you will be diapering her, cleaning her, feeding her, dressing her, etc.). If you can, you can keep her at home.

If you work or have children that need care, your plan should be some form of placement that fits with her financial situation.

She is not faking this or able to care for herself.

CoastFog · September 2021

that sounds extremely difficult, especially not feeling support from other family members and having to care for an extremely disturbed parent. I encourage you to explore assisted living options or at least in-home caregiving so that you can have some respite. Taking care of yourself will ensure that you are able to make the right decisions in caring for your mom.

PickledCondiment · September 2021

While getting your mother's issues in order, don't forget about the financial parts of the picture. Does she have any assets (SS, checking, savings, etc)? Does she have a POA (Power of Attorney) naming someone to handle her business, medical affairs? Please contact an eldercare lawyer ASAP to begin to get the required paperwork in place. While seemingly daunting, once you have the proper legal authority, you can begin to make any required decisions for your mother's care. You will need this level of authority should you consider placement in a facility.

As DrinaJGB suggests, find another neurologist ASAP, three months is too long to wait for a follow-up. No provider has all the answers, find someone else and get another viewpoint.

Forget about your sister, you're now adult in the room, you'll need to take charge.

Marta · September 2021

Kelly: your mother sounds as though she is in the mid-stages of dementia of some sort. The brain CT can be completely normal, and the patient still has dementia. CT is done only to rule out other, potentially treatable causes of cognitive decline. Dementia is diagnosed with a neuropsychological exam. Has your mom had this? Part of the diagnosis of dementia is that there be progression over time - no neurologist wants to make that call on the first visit. From that angle, the three month follow up is completely appropriate; in fact, for most dementias the decline can be more sensitively measured at six months.

Use the time between appointments to get the legal issues arranged, especially the POAs. From your description, it sounds as though you will need those, whether or not the final diagnosis is dementia or something else.

Your mom is “shadowing “ you because without you, she does not know what is happening, or what to do, or what is to come.

I highly recommend that you read Understanding the Dementia Experience by Jennifer Ghent -Fuller, available as a free download.

towhee · September 2021

Kelly, you said "after a few weeks I noticed she had trouble remembering". Are you saying she had a change for the worse since she came to live with you? If so, it might be worth another trip to her PCP. It is possible that the anti-depressant either does not work for her or is causing some side effects. It is also possible that she has some mild dehydration or infection. The change in her environment could be causing some anxiety as well. When someone is at this level you can not depend on them to know or remember what their problems are, you have to have oversight.

It is common for people to do better on tests at the neurologist than you think they are capable of, this is called showtiming. For your next appt. make a list of things she has problems with and give it to the doctor ahead of time.

I hope your next appt gets you some answers.

Iris L. · October 2021

Did she have any blood tests to rule out medical causes of memory loss? There is a small chance. Is she on any medications that might cause memory loss? Many common meds that older adults take cause memory loss as a side effect. Check rxlist.com or other sites.

Following you everywhere is called "shadowing" and is a sign of mid-stage dementia, as well as the agitation.

Your plan to work with the memory issues will be to make her home environment safe and comfortable for her. PWDs need routine and consistency. They need no responsibilities because they lose executive function (ability to do multi-steps) in addition to losing memory. She should not be alone.

Iris L.

Emily 123 · October 2021

Hi Kelly,

Our paths are about a year apart. Our family had the emergency 'yikes, what happened?!' with my mom, who came to live with me in early May 2020, and willingly went to a dementia focused AL this February once the vaccine came out. Let go of your sister as a care option and plan around her-she is incapable of providing the care your mom needs. Your mom needs routine and calm--the same old, same old every day. Your sister's telling you she can't handle it, and so doesn't need to be in the mix. Get the financial and healthcare reins in your hands with a DPOA, if you feel like your mom can make that decision on a 'good' day. With her limited resources it's time to get your mom's social security and medicaid status clarified. https://www.elderlawanswers.com/elder-law-attorneys

I know that you may want to try to keep her with you as long as possible, but consider if something like a care home might be a good fit for your mom-a move now while she's still capable of following some direction with her ADL's might be easier for her. It would allow you to go back to a more 'mother/daughter' relationship. Consider if your 'old' mother, looking at how she is now, would want you to do this. This is not like taking care of a mentally sound little old lady who needs help getting around. Please browse the threads here. Caregiving for an elder with dementia is a full time job. It does sound like the current situation is untenable, so at least get some in-home assistance and start making a 'plan B' if keeping her with you doesn't work out. Elder daycare would help too, if there's any in your area.

Did you share with the care providers that your mother was aggressive and angry? If other causes have been ruled out, then meds may be in order to help calm her down. Is she randomly that way, or is it specific to some interactions? Be persistent.

Some of this may be due to her recognizing her losses. I found one of the things I would do with my mother was make the assumption that she could sense the passage of time in days/hours/minutes. After all, she had that big Alzheimer's clock I got her, right? I also thought "surely she can look in the mirror and see that she looks as bedraggled as a wet canary'', but she had lost that ability. Her daughter telling her to shower when she was convinced she already had that day (because she had always showered every day) made her angry and argumentative. Trust me when I say no amount of documentation on your end will convice the PWD.

The other thing I did was try to keep my mom as engaged in activities as she was telling me she wanted to be. I would run around trying to get her set up to do things she would airily tell me she needed to do (Water aerobics? Sure!), not understanding that actually doing these were now stressful or beyond her. She would get angry or sad and try to cover it up by reasoning it away. It's ok if they self-limit on what they do everyday. My mom's happy as a clam playing solitaire on her Ipad & doesn't like going anywhere there are crowds--too much input, too many decisions to be made--so she walks every day & plays solitaire & sits on the porch in the sun at her AL with others and she's good. Something that your mom might find soothing is listening to music from her youth--I pop a pair of (wired) cheap headphones on my mom and set up a Pandora station for her on the Ipad and it makes her instantly happy.

You've probably read this article that Marta recommended already. I found it helpful because even with my mom smack dab in front of me clearly having issues I needed the reference to be able to label the behaviors: http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

This website lists the stages of dementia, and a excellent checklist that identifies behaviors in each stage. The folks on the forum say that when you look at stages you select the most advanced one that fits the behaviors, even if the more progressed stage happens infrequently, since there can be a bit of a fuzzy overlap. You will have to supply an email to download the checklist, but they do not spam. https://tamcummings.com/stages-of-dementia

I feel so overwhelmed

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