Wednesday, February 8, 2023

On repeat

Mom's now getting agitated and anxious, most of the day yesterday. They first called me about 10:20. I was going to call in and check on her, but was waiting to see if their maintenance guy was going to return the message I had just left, then they called and said mom was being pretty anxious and kept asking to call her mom, so they offered to call her daughter, so she could talk to me. Mom said nothing to me about wanting to talk to her mom - just that she's ready to be done staying at this place......ugh! I really don't know what to say! I guess it's really not going to matter what I say because it's not going to stick in her memory. She said something like "I can just leave here when I want, can't I?" I just said 'oh, we're going to have you stay there awhile, they will take care of all your meals and you can do activities there". She still wasn't buying it. Then she tried again and and said "so what happened that I need to stay here now?". So, I tried the honesty route. "well, your having problems with your memory and they are going to help you". Her reply was well I can take care of myself. I told her with her memory problems she's been forgetting to take care of herself and they will help her and it's a nice place, etc.. 

Then they called back again in the afternoon and put her on the phone and we went through the same thing again. I then asked mom to put the "girl" back on the phone when we got done talking and talked to a staff member. I said I was having trouble knowing what to tell her as to why she has to stay there, what are they saying to her? She said all's she's been saying to them is she wants/needs to call her mom, which of course they won't tell her her mom isn't alive anymore and I said no, I'm not telling her that either. She's not telling them she doesn't want to stay there anymore. She apologized to keep calling me, but mom keeps tapping on their window and asking to call her mom. I said it's ok if they call me, I said maybe try telling her they already let her mom know she's there or telling her her mom is on vacation right now, we'll have to try calling her when she's back. I don't know. Nothing is really going to stick with her. I even tried the "your apartment rent at your old place went way up and this place is cheaper and nicer!". Then she wanted to know where her stuff is, so I had to try to explain to her her things are in her room they have set up there. She'd say "oh, I have a room here?" She asked oh, did I sleep here last night? yes you did. I didn't say you've slept there 4 nights now.

The maintenance guy never did call, but on the 2nd call I when I had mom hand the phone back to the staff person I mentioned to her about her landline and that I think it's just that the cable wire/cord needs to be plugged into the back of the modem I have her phone line plugged into. She said she would go see if she could hook it up. Awhile later I logged into mom's phone account but the modem was still showing as offline. Then I checked again at 4:30 when I was done with work and it was working! Now I don't know if that is good or bad, LOL. Once mom realizes it's working she'll probably constantly call me haha. Their dinner time is 4:30-6pm so I decided to wait and try calling around 6:30 to make sure it was calling in. I was dreading the call because I knew it would just be more of "I'm ready to get out of this place". The first time she said it, I just completely ignored her and started talking about something else, but as soon as I waited for her reply, it was back to wanting to leave. Then she told me she'll just get her brother to move her LOL. I said he's in Oregon,  he lives to far away. She said well, I'll just pay him lots of money ;)

From now on I'm just going to keep with my original lie - her apartment/building is having major repairs and she has to stay in this room while they fix her apartment. It's just going to be like every other change I've implemented with her over the past few years....like taking her checkbook...lots of questions over and over for awhile about where it is and then finally she forgets. 

I did get a text from K yesterday asking how she is doing, so that was nice. My one (step) cousin did finally reply to my message, but the other cousin never did.

I do have the monthly activity schedule for mom's new place to refer to. They do seem to keep them really busy. For example today's schedule:

Breakfast 8-9:30
Morning mindfulness (not sure what that is) 9:30
Watercolor memories 10:00
Balloon bop 10:30
Lunch 11:30-1
Baking 1:00
Tea Time 2:30 (other days have ice cream social, happy hour, smoothies w/J at this time)
Hand Care & Spa sessions 3:30
Dinner 4:30-6 
 
We will get through this! (right??.......)

26 comments:

  1. Mom sounds unhappy and agitated. Another option is to get her own place or apartment and hire day/night shift carers. My friend's pa had dementia and they kept him in a separate 'mother-in-law' suite at their home and hired carers. Sometimes the aged and sick just want the peace of sitting around in their own space and not constantly jumping with activities.

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    1. She actually likes socializing and activities. She would need 24/7 care, which hiring out to a caregiver service would cost more than memory care. K's service was $25/hr.... Yes, she's unhappy and agitated, it's a big change that her brain can't comprehend and even if she was here at my home, she'd be telling me she's ready to leave. Even if I put her in another apartment (which is what she was in, with p/t caregivers) she would be unsettled with the change. They don't force them to participate, but do encourage and let them know an activity is going on. It's going to take at least a couple of weeks for her to get used to this place, that is a given and to be expected that she will be unhappy and agitated. I've heard of very few who aren't, when moved. Probably why many places say to just stay away for a week or two.

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    2. Having her in a separate apartment just won't work. A community setting works way better. Even if you paid $200 a day for care, you're at 6k a month on the care ALONE, let alone finding housing etc. This new place takes care of everything everyone needs at a way better cost and with less stress!!

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    3. I looked it up - 24/7 care would be at least $15k a month, on top of renting a place. I agree this place is much better and will be less stress. Plus they have nurse on staff as well as a doctor who comes in for visits.

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    4. OMG! I only calculated for 8 hours not 24, yikes. Yes you're much better off having her where she is anyway!

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    5. and honestly, I would not feel comfortable having to hire caregivers from some service to come in 24/7. She would have no activities, other than maybe what they might try to do with her, there would be no one there to make sure the caregivers were doing the right things, being nice, etc. Where she is now there is lots of staff and lots of overseeing of the staff to make sure they are giving proper care.

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    6. Yeah 15k sounds expensive and might not be doable in the long term. I believe my friend paid 10k then 12k per mth for carers but they were rich. Only the rich can afford good dementia care because even nursing homes are expensive, far less, 24hrs home care. Dreadful, terrible disease.

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  2. Oh my heart goes out to you all. So tough! In time she hopefully won't be as anxoius about staying in this place. I am glad the staff is listening to her concerns! One day at a time, one step at a time - LOL at her calling your uncle, he definitely is not helping!

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    1. Hopefully as the days go by, she will get more comfortable. The residents that already have lived there awhile seem content and I'm sure she will get to that point, too. Most of them probably went through exactly what she is going through. She was to the point at her previous apartment that (especially evenings) she didn't even recognize that was her apartment and her furnishings and belongings and was telling me she was leaving in a few days and when I'd say that is YOUR apartment and your things, she would say "it is?"

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  3. Oh gosh I'm so sorry. I reckoned she would be bothered by the move but I do hope she settles down quickly - for your sake as well as hers!

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    1. We will get through it. I'm sure the staff is also trying to get to know her, what makes her happy, what makes her not agitated, etc. It's not like I stuck her in this crappy nursing home ;) This place is fancy and well staffed. They even just opened up a "coffee cafe" for the residents (mostly those in independent and assisted section) and said they will take the m/c residents for "coffee trips" too.

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  4. This sounds identical to what we experienced with my mom. Eventually she became accustomed to her surroundings & the people.
    Your mom is still so fresh & unfamiliar with everything there.
    This is a rough period for her & you.
    Hang in there:)

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    1. I'm hanging in there. I know it will get better after a time.

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    2. Definitely an apartment by herself would not be in her best interest. The other reader pointed out a totally different situation with someone living in an attached home so oversight was very available and I’m sure the familiar was in and out helping and supporting. Even with money not being any issue finding/keeping staff is unattainable these days. (I’m a home care RN). And if you thought you had people hired what about sick calls, no shows etc. with you not living near. Plus yes the activities and support of more people around her with nursing oversight is what is needed. Sadly this is a progressive disease and she’ll need more and more help. This is where she needs to be and being a memory care home I’m sure none of this is new to them. It’s just sad for both of you. But I think she’ll adjust and after awhile forget her old place to a point, odd how she even was confused about her old place and thinking she was in a hotel room etc. but now recalls her other place as home.

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    3. that's exactly what went through my mind about 24/7 care. It would have been a job just keeping up with sick calls/no shows, etc. I'm not so sure she thinks of her old apartment as
      home" either.....since she was often starting to not think it was home, I'm wondering if she's still wanting whatever "home" has been on her mind these past few months.

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  5. you are probably right, it's harder on me right now, in some respects. I just looked it up, the average cost per month for 24/7 care in your own home is $15,000-$18,000 (or more) per month! She could afford that for awhile, but not if it was very long term, that's for sure. Plus, she'd have to pay rent on top of that. Honestly, with her level of dementia and not knowing any place is "home" at this point, that would be a total waste of money, let alone I'd have to constantly be on top of making sure people showed up etc. None of this is ideal in any respect, but I think m/c is best for her, plus these caregivers are specifically trained with dementia. Home health care may not be that specialized.

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  6. Any kind of change with an Alzheimer’s patient is hard on them. So not matter what you did she’d be going through this and she needed to be moved for more care. Sounds like you have put her in a safe and caring environment. I love that they called you and had her speak to you. I think that’s a good sign about the place. ColoradoGirl

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    1. yes, even if I had hired someone to be at her previous apt 24/7 she'd be constantly telling me she didn't need them there. Both times they called me (from nurses station phone) they were very nice and when I heard them talking to her, like saying "here's your daughter on the phone, we thought you might like to talk to her" they were very sweet sounding with mom. During one call she said she kept hearing a beeping on the line and thought another call was coming in so she tried to give the phone back and the nurse told her that's ok,they can call back, you can keep talking as long as you need to. When I called the main office to find out if maint. could hook up her phone and to ask how I go about setting her up with the hairdresser, the main receptionist was very nice and helpful

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  7. We experienced the same with my mother in law. It is heartbreaking to watch the disintegration of a brilliant and loving person. Mine died peacefully shortly after moving into a memory care facility, a small one, with gentle caregivers. If she is safe and being gently and respectfully cared for, that's as good as it get.
    Hugs from me to you. I've read your blog for several years but never commented before.

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    1. thank you, that helps me know I did the right thing and she will be ok. I'm sorry about your mother in law. My grandfather had Alzheimers and just died peacefully in his sleep one night. It was the best way to go, in my book.

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  8. I know you are questioning yourself but your mom needs lots more help than the other place could give. Over time she will get use to there. I would stick with one story like the other place is being worked on. You don't know how long. I'm sorry this all falls on you.

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    1. I know she's in a much better place now. I'll just have to deal with her not wanting it. I agree, I need to stick to one story of the other place being worked on.

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  9. I'm sure it's hard on both of you. My husband used to have to wheel his father around the house every night to prove to him that he was "home". They had lived in that house for over 10 years. We'll never know whether he was remembering their previous home, or his childhood home. I hope your Mom gets used to her new surroundings quickly.

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    1. I used to try to prove to my mom that she was in her apartment with her things but after awhile I just went with her reality that she was staying "at this place and going home in a few days".

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  10. You were absolutely right to place her in this memory care unit. It's going to be exhausting for you for a few weeks still by the sound of it but eventually she will forget that she lived somewhere else. Just hang on in there!
    Mindfulness, living in the moment, experiencing the sound of the sea or the scent of a candle maybe, eyes closed, sounds very appropriate.

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    1. thank you. It is going to be exhausting for a bit, but it was getting exhausting before, so now it will just be a different exhausting until she settles in.

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