New member/caring for my mom with memory loss

River54

I just found this forum and have a feeling it's going to be very helpful for info and support! My mother (widowed) is 80 years old and was assessed by her doctor in 2019 with "severe short term memory loss". Her father had AD, but it progressed fairly quickly, compared to how her cognitive decline has slowly progressed the passed several years. It started out about 5 years ago with forgetting what word she wanted to use. As of now it has progressed to a very affected short term memory, where she can forget what we just did or talked about 5 minutes earlier. But, I've also noticed she doesn't have a lot of long term memories anymore, either. I'll try to bring up things from the past, but she doesn't seem to remember much now.

Last year I moved her to be close to me (I was 400 miles away) and she was super receptive to that move, which has been such a blessing, as I am an only child and the one to care for her. It was getting impossible to help her 400 miles away and I didn't want the bulk of care having to fall on my busy daughter's shoulders. Even so, I live fairly rural and am almost 50 miles from her, the nearest place that had AL places. She is currently living in an independent senior living place. The facility provides all meals in the dining room and housekeeping and activities. At the time I moved her here 15 months ago, I questioned them as to how well living in this facility would work with her declining memory and as she would eventually need more help. I was told that many of the residents need additional help and they just hire out 3rd party help to come in to assist them with their needs. I thought this seems to be a reasonable solution, though now I'm second guessing my decision. Mom also didn't want AL, she wanted to have in independent place (like she had been living in 6 months prior, though 400 miles from me).

I think I have covered all the bases as far as DPOA, healthcare directive, etc. We have added me to her banking accounts and retirement account, so that I may take care of things. Until about 8 months ago she was still doing fairly well with her checkbook register and could still get online to look at her bank account. Around the first of this year every couple of weeks she'd call me because she couldn't get online and after I'd help her, she was having trouble recording the transactions in her register. (I have her few expenses all on auto pay). She was 2 months behind on her register, so I offered to take it to update it and get it balanced. I also switched her rent to auto pay, because half the time she was forgetting to take the rent check to the office or she was taking a check twice. I was spending a week every month asking her if she remembered to pay her rent "oh ya, I did" only to keep watching her bank online and see no check cleared.

This is where (as someone on the forum so aptly put it) I have had to fib and deflect. It was just so much easier for me to keep it up to date, than trying to get her to write down the transactions only to find out she still didn't get it done. Then she tried to write a check for a magazine (that I don't think she even reads anymore) twice and I caught that before the 2nd check went out. She also no longer has any idea what to do with mail she receives. It will just pile up on her desk. She will ask me on the phone about some mail she got and I will tell her to shred it (she has to shred, she won't throw in garbage can) and when I get to her apartment a week later, it's still there. I am now starting to have some of the mail (mostly it's health insurance and prescription type mail) come to my address. I fibbed some and told her I was really worried she might be a part of a fraud scheme, so I thought it would be good for me to hold on to her checks. She agreed (thankfully) but then of course kept forgetting I had them and kept thinking they were lost or someone stole them. I think she's finally remembering I have the checks now. She keeps a bit of cash, but if she uses it, she forgets and then thinks someone came in her apartment and took the money.

She loves where she is living and very involved in all the activities, which is great. I have learned a lot the past year. I don't correct her or tell her she's already told me something. I just act like it's the first time I've heard it. I've learned if I correct her she gets worried and upset that she's forgetting. For the most part, she does not think she has a memory problem. I've learned to just not even tell her some things, it's just easier and she won't remember anyway. I thought it would be great having her living so close that I could have her at my home often on weekends or longer periods over holidays. I've learned that she's more comfortable just being in her own apartment and with her daily routine she has there. I've also learned that having her here for like 2 nights is my limit on my sanity of repeating myself over and over and over.

I also learned why, for probably a good 3 or so years before I moved her here, she was always having mornings where she "just didn't feel that good". It happened several times a week, but by later morning she was fine the rest of the day. I had her in to her doctor about it 2 years ago and he was no help. After I got her moved here and was managing her meds I noticed she had Advil and Tylenol PM, which over the years she had mentioned she'd take at night sometimes. I discovered these "pm" medicines are just benadryl and NOT good for daily/long term use! I asked her how often she takes them and she said quite often to help her sleep and sometimes she takes 2. I took the bottles and told her she can't take these anymore and if she's having problems sleeping we'll discuss w/dr. Immediately the bad mornings she had been having for several years stopped.  She has not had any since! I told her new dr. about it and she agreed, do not take those PM pills regularly and that they can cause memory issues in older people. So, who knows if that helped contribute to her memory issues she has now.

She is in good health otherwise, though I'm now starting to notice she doesn't bathe as often and she's not really wanting to do her laundry (there is a laundry room down the hall for all to use). She says she washes her undies in the sink and lets them dry. I said, but what about your other clothes? you might as well just wash them together. Obviously her reasoning on this has declined. But, if I suggest getting someone to come and do her laundry weekly, she balks and says she can do it. She's also having trouble remembering to take her meds. I switched her to a daily pill box (rather than taking out of her her bottles like she used to) a year ago, but now she's starting to have trouble remembering to take the pills. I have a digital calendar/clock (that she loves) that has an alarm to remind her to take pills, but she now will turn off the alarm and immediately forget that she needs to take the meds. These are my 2 issues I'm dealing with right now. The laundry and the meds. Does anyone have experience with that Hero Medication dispensing system? She keeps resisting me to hire help to come in (she has plenty of money). When I do have to eventually move her to a memory care facility, it's basically just across the street from where she lives now. By that point, she probably won't even realize it's a different place, I'm guessing.

Quilting brings calm

Might be time for assisted living, which can handle the medication. 

Also I  suggest you change her mailing address to your home.  Then you can organize, etc. 

loveskitties

I saw someone else post on another thread about having a "friend" come in rather than a helper.  The way they did it was to go to Mom's and take the "friend" along so they could socialize.  After a few visits the daughter would leave the two alone for a while so they could "visit".

The the "friend" called the Mom and said she enjoyed their time together and asked if she could drop by.  After a few visits the "friend" was able to start helping with needed items.  That way Mom didn't have "help" she had a "friend".  Sounded like a great solution.  Of course the "friend" was a paid helper, but Mom never knew that.

Just another work around to make LO feel in control but also allow family to see that things got done.

River54

Quilting - it's so hard because while she's easy going and agreeable, she just doesn't think she needs AL yet. I'm sure that's because she doesn't really know she's forgetting things. I just need to change her health insurance to my address and I think I've got the main bulk of her mail now coming here. I even have her medications coming to me, so I can bring them to her. Since I moved her here first, rather than AL and MC will be needed for sure at some point, I'm kind of hoping I can get some outside help where she lives, until I need to move her to MC. I just need to figure out a way to get her on board and not feel like I am pushing her to do something she doesn't want.

River54

loveskitties - that is a very creative idea. I was kind of thinking of just hiring (there is a lady that works for quite a few of the residents in this capacity) and bringing her with me to visit and telling my mom some little fib as to why she is helping, until she gets used to her.

jfkoc

I do not think your  mother is going to be receptive to "help".  The friend idea might work  but not if she need to drop by more than once a day.

How about telling your mother that it is a service of the facility. ....already paid for.

Emily 123

Hi,

  If she's still doing email, you might want to filter it so that she doesn't get ones that trigger her to go search for the checkbook.  Intercepting the mail will be helpful, too.  I hand my mom her catalogs, and like you, see them still in a pile the next week.  Perhaps also think about setting up your phone # as the contact in any of her accounts that might need password recovery. 

 She's at a point where she can't manage her meds by herself, and skipping or double dosing is a real concern. My mom was taking her vitamins every morning, but thought that they were her AM prescription drugs. That was a problem since one of them was her levothyroxine.  I moved her in with me and tried the big 'Alzheimer's' digital clock +  a pill reminder box but that only lasted a month.  She could not make the connection between the two new things... she was as mad as a wet hen when I would hand them out to her, but there you go...Consider if there are over-the-counter drugs that should be removed too.   

  From what you say about her turning off the alarm for her meds:  If something set off the smoke or CO2 alarm at night, would she recognize what it meant and be able to take the series of steps to rescue herself if she's alone?  As you note, her executive function is diminished.  If not, then you might want to consider AL now while you have time to look at places and she's still adaptabile.  Am not pushing that though--the aides sound like a great idea. Best wishes!

M1

Hi River. If you're not familiar with the term anosognosia, you may want to google it-its more than denial, its true inability to recognize the deficits and it's part of the disease. Sounds to me like she's more than ready for assisted living. Unless someone is there to see the meds go in her mouth, you can't be sure she's getting the right doses.  And about the laundry- I'd worry she might ruin the common use machines and youd be responsible, we've had some very near misses here on that front. I doubt that she'd be capable of cooperating with a takeout laundry service unless you were there to supervise it.

Here's the thing, you need to do what's right for her and is safe for her whether she agrees or not, just as she did for you when you were a child. The role reversal is hard, but you've got to do it. Good luck.

Iris L.

River54 wrote:

  Obviously her reasoning on this has declined. 

It's not just reasoning.  Her executive functioning is impaired.  This is the ability to do multi-step actions.  No matter how much she might want to execute, she will be unable to.  It's part of dementia.  

Iris L.

Mlewis501

Please consider moving her to another place that will offer her the services/watchful eye that she needs.  If you hire someone to come in to help, you are only putting off the inevitable.  I wish I would have moved my mother earlier to where she could adjust while she still had some reasoning skills.  The move is never easy, but she needs more help than she is getting now.

River54

Emily 123 - I have been monitoring her emails for junk for awhile now. She used to get a lot of spam coming through and not able to realize some of it is spam. I reset her spam filters and just as part of my daily morning routine, when I check my email I check hers to delete any spam that came through. Less and less now she even looks at her emails (and now that there is no spam she rarely gets email) I'm noticing now.

All her online accounts I have the log in and passwords for and anything I've now set up for her (new insurance, new internet, etc) I set up with my email as the contact. All her bills are on autopay and paperless billing. I've tried to streamline both her and my life as much as possible. If she does have a problem with trying to get on her computer, I have a program set up where I can access her computer from my home computer and figure out what she is doing. That has saved my sanity more than once the past few years, LOL.

She doesn't read anymore, but she still loves doing her crossword puzzles, which is good. Her senior living place has lots of activities and she does exercise almost daily, wii bowling regularly, and other misc activities they have. She likes to watch the news and some tv in the evenings. She also takes daily walks. She keeps very busy, which is great.

jfkoc - that is a very good idea to tell her it's part of the service she is paying for.

M1- I had not heard that term and will look it up. I don't think it's denial, either. She just doesn't realize she's forgetting. Occasionally she will, and then she gets concerned, but then quickly forgets about it.

harshedbuzz

You've already gotten some very good advice.

Given that you mention she's not showering as regularly as in the past, it is very likely she has moved into the moderate stage. This means she's likely going to need a secure MCF and skip over AL as it will not be sufficient for her needs.

At some point soon, she is going to require 24/7 hands-on care- cameras, mirroring her computer and putting her meds into some sort of electronic device will be no substitute. 

A couple of other thoughts, you describe her as socially engaged at her current place. This really surprises me. IME, people who do not have dementia do not enjoy the company of those who do in the places where elderly live.

My aunt was misplaced into an AL with the hopes it would be sufficient care. She was midstages, but was shunned by the others living there once they discovered she couldn't keep up with their meal time conversations or activities which weren't geared to PWD. A few of the ladies were downright mean to her.

I saw the same with my dad who had dementia. He and mom split their time between a 55+ community in FL and a NORC (naturally occurring retirement community) in MD. They started spending more time in FL because they were no longer included in the social life in MD. Dad told me all kinds of tales about days at the pool, working out in the gym and dinners out with friends. As dad progressed, we sold the FL house and when I went down to clean out the person things and sign the paperwork to sell it, not a single one of the friends or neighbors asked after dad. One gentleman who did visit them remarked on what a pariah dad had become while the rest said they'd not seen him at the pool, gym or dinner club in over 4 years. 

HB

River54

HB - for the most part she still totally understands the how and why of things, she just can't often remember she just did something or talked about something. I think that is what I am seeing with her right now as she is showering less days. I think she has always been one to shower every other day. Well, now of course she can't remember if she did it yesterday or 2 days ago. She's very social (always has been) and with the calendar of activities provided she seems to do well looking at that to see what activities she has going on for the day. If I tell her a few days in advance I'm going to be coming to see her or pick her up to come to my house, she will remember it's happening soon, she just has trouble sometimes remembering which day or what time (most often it's just what time and she will ask me several times). She still keeps her place neat as a pin (other than mail and catalogs in a pile), so nothing has changed there.

She no longer drives, of course. Thankfully that turned out kind of easy to do, when she was still living 400 miles from me. Her battery on her Prius was getting old and died, since she was hardly driving, and my uncle took it "to fix" and then we just kept steering her towards not needing it back and then I moved her where I am, and all was good with not having it.