Getting Started(1)

GoodSon1

Friends:

I’ve been lurking on this caregiver’s forum for a while, but this is my first (of probably many) posts. I’m thankful the forum is here. It’s encouraging to see heartfelt responses from personal experiences. I hope I’ll find the support I need for my particular situation:

After forty years in another city, I am relocating to my home town to look after my 92- year-old mother. She is still in her house, but it is too much for her to keep up with. Moving to AL is out of the question. She needs no help with most day-to-day activities (waking and sleeping, bathing, dressing, cooking, eating, taking medications, being safe, socializing). I don’t worry about her when she is alone. She voluntarily stopped driving due to neuropathy in her leg. She is mobile, but has serious balance issues and cannot stand without holding on – often with both hands. She moves around using a cane or walker. She is an avid sports fan and TV news watcher. She has developed a hoarding disorder. She has difficulty letting go and making decisions; she is easily distracted, likes to accumulate and ‘churn’ (as hoarding experts say). These behaviors occur on both tangible and intangible levels, and affect everything. She has some cognitive decline and short-term memory loss, and I believe I see early signs of dementia/Alzheimer’s. (Her older sister was Dx with dementia before she died in 2017). Although she still manages to keep track of some her finances (some bills are paid electronically), she is easily confused by some paperwork. She has no will, has not designated POA, and has not made funeral arrangements. Any effort to address these issues is met with resistance. There are plenty of other details, but this is an overview.

I realize there are a number of areas that need attention - most immediately, the will, POA, and funeral. There were some lovely suggestions in a thread started by Anonymousjpl123 on January 29 - I’m open to hearing more. Overall, I want her to keep doing the things that she enjoys, while taking care of the things that will become a burden.

I’m looking forward to hearing from others. Thanks!

loveskitties

You might want to start with checking into what happens in her state of residence if she dies without a will.  More than likely you would have to go to court and go thru legal hoops to be able to take care of her estate.  Then share this information with her and express concerns about that happening.

If you can get her to agree with a visit to a lawyer for a will, let the lawyer know in advance that you would also like him/her to recommend a Durable Power of Attorney, Medical POA and any other docs which would be needed if you need to step in to make sure she is safe and well cared for.

M1

Welcome to the forum. While the legal stuff is important, the first thought i had is safety. Does she have a personal response system and is she capable of using it? A fall while alone could be devastating.  From what you're describing i would worry a lot that she is past the point of being safe alone.

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harshedbuzz

Good Son-

Hi and welcome. I am sorry for your need to be here but glad you found this site.

My first question is about whether you wish to return to your hometown, or would it make more sense to move mom closer to where you are now. There are great resources for those who can self-pay in FL, but if the possibility to need Medicaid is in the future you may find more resources where you are now. My folks split his time between FL and MD; I moved them back to where I live when dad was finally diagnosed with dementia. YMMV.

You mom needs to be seen by a doctor immediately. Her PCP can do the tests necessary to rule out conditions that mimic dementia-- hormone or vitamin deficiencies or a lesion of some kind. A quick mental screening like MMSE, MoCA or SLUMS could also demonstrate a loss of cognition and memory. The PCP could refer to a neurologist or memory center for an actual diagnosis and perhaps a geriatric psychiatrist to treat the hoarder behavior which is sometimes anxiety driven.

At the same time, I would get the appointment with a CELA scheduled. This is critical. FL is notorious for their many professional guardians who have seniors deemed incompetent and take over their lives. The first appointment should be about obtaining a POA so you can act for her and also understanding Medicaid planning if her funds are limited. Since she's been reluctant, attend alone so you can talk frankly. Most CELAs can finesse the situation to get the POA signed assuming they deem her competent. If they don't, you will need to get guardianship which takes longer and costs more though the fees come out of the PWD's assets IME when you prevail.

Wills and funerals can wait. Perhaps the CELA can coerce her to create a Will when the POA is done under the guise of "estate planning". If you obtain guardianship, you will be responsible for this and there will be a formula you must follow if there's no will already. Her funeral can wait unless you anticipate she'll need to use Medicaid at some point. As POA you will be able to pre-pay that as an asset exempted for planning purposes. 

Will you be moving in as her caretaker? I would be concerned about her living alone given the mobility issues. You'd also want to verify her ADLs and IADLs rather than rely on self reporting. You'd also want to make sure she isn't being scammed via the mail, online or by phone. 

HB

GoodSon1

Thank you for the responses and suggestions. I’ll try to answer some of the questions that were raised (primarily by Victoria 2020 and harshedbuzz).

For the past year and a half, I have been living with my mother for extended periods (generally one to four months). I am able to work remotely, but make brief (generally one-month) trips to my home for in-person work. Therefore, much of my reporting comes from direct observation. I’m not interested in returning to my hometown, but I may not have much choice. As much as I would like to, moving my mother to my home would be too disruptive; she’s been living in the hometown since she was a toddler. All of her social connections are there.

She has said she would consider AL if a family member was to live in her house. But she hasn’t identified anyone who is a good fit. I have considered offering to take on that responsibility, but I have a partner who is still working full-time; it will require them to make a move that they are not yet able to make. She has lived in the house since 1968, considers it to be her legacy and does not want it to be sold.

My mother enjoys cooking (she’s good at it!) and is quite focused when preparing food. Most of her cooking activities are either one-handed, or, if she needs to use both hands, leaning on her elbows or seated. The kitchen is fairly compact. She has developed a surface-to-surface process for moving items around. Occasionally, I move a plate of food for her if I sense it might be too difficult to carry. I take care of most of the groceries and other errands, although she does enjoy an outing for shopping. I watch her as she fills her medication container and takes her meds. She has a walk-in shower stall with a seat and a hand-held shower head. Her personal hygiene is good.

Recently, we (a sister who has handled the medical affairs and I) have had a problem with her PCP: they disappeared (yes!) a over a month ago. We’ve found another doctor, but so far she’s had only one appointment. Unfortunately, this means it will be some time before we can address all the necessary neurology issues. Currently, we’re working on setting up the regular prescriptions with the new physician.

There is, of course, more, but this is enough for now.  I’m thankful for the support of others.

Iris L.

GoodSon1 wrote:

. Any effort to address these issues is met with resistance. 

Welcome Good Son.  If your mom has dementia, she will probably experience anosognosia.  This is a characteristic of dementia that causes the PWD to be unaware of having dementia or of any changes.  She truly believes she is fine.  If you confront her with reality, she will resist and become upset aka resistant, as you have seen.  You will have to learn work-arounds from the members.

On the other hand, if your mom does not have dementia, she may just be an aging older adult.  I posted about my frail neighbor who does not have dementia, but who is somewhat like your mom at age 91.  However, my neighbor knows and admits she cannot do anything, and she readily accepts help.  Now that I think about it, your mom does sound like she has dementia.  But that is not for me to say.  She does need a thorough workup for the many dementia mimics.

Regarding safety: my neighbor has used her Life Alert five times in the past two months.  Safety is a huge issue in this age group.  Suppose the pan caught on fire while she was cooking, could she respond quickly to put it out?  There are senior safety guidelines on alz.org and elsewhere on the internet.

Iris L.

H1235

May if you explain what will happen without a will that would motivate her. Could the house sit unused with her things in it. That is kind of a security thing for some, just knowing it’s there.

Aljwhara

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