Gonna put you in a home!

Fairyland

Tongue in cheek title btw.

I have toured 5 local facilities and 4 of them are nice enough, they all have a progression to nursing home or memory care as needed, and costs and T&C are similar.  My situation is much better than many who post, and my heart goes out to the caregivers and LO who are suffering the worst disease(s) ever. My mom has got at least 2 other terminal conditions (lung disease and cancer) and they are preferable by far for her, compared to dealing with loss of her self. The only consolation is she doesn’t realise or remember about any of it, often!

So between a very busy week dealing with my full time job, trustee responsibilities I signed up for before the s* hit the fan, an all day cancer checkup in a distant hospital, and her and my recently minor children’s taxes which they needed help with (complicated inheritance thing), I have hit a wall of despair in my own mood. I’m on longterm treatment for depression but it isn’t a cure.

Today I will try to make myself have the talk with her about trying out an assisted living.  She has never said no to that option and even said to the tax lady, when asked how she is doing, that she is having problems doing things in the right order and remembering things- completely unprompted.   I will present it as temporary while I go home thousands of miles away to deal with my own life for a while, but you and I both know it will NOT  be temporary and unless it goes badly wrong with the placement, that is where she will live out her remaining days.

I have the luxury that I can stay near for a few weeks to snag things and make sure as best I can, that my remote care measures are functional.

Stuck in the middle

She certainly needs your help.  She is fortunate to have you in her corner.

Melanie12

Hello! I’m sorry for your mom and wish her and you all the best! I don’t mean to scare you both my father had a terrible experience at those kind of facilities and he went to 2 different ones. Now keep in mind this was in 2020-2021 when covid was running rampant. This is just my opinion but I feel because of the “no visitation” laws they had back then…workers felt like they could use that to their advantage. I read so many horror stories about patients getting worse because of neglect from caregivers. That was the case with my dad. Nobody would ever our phones calls or return them. My dad fell multiple times due to lack of supervision…also I got a phone call telling me my dad wasn’t eating and was asked if I wanted to let him die “naturally” I hung up the phone in anger and brought him home straight away. With his insurance (Medicare) we were able to get a caretaker in the house. He got SO MUCH better being at home from how he was in the facility. Now listen this is just my experience but I wanted to warn you for the worst case scenario. Not everyone will have the same experience. I’m not sure if they still ban visitors but I highly suggest taking her somewhere where visitations are allowed…also ask about the number of residents and staff…you don’t want her crammed somewhere with not enough caretakers. I think if you found the right place this could be a beautiful thing for the both of you. I really do believe there are good facilities out there but we just need to be cautious. In the end I hope everything works out for the both of you!

harshedbuzz

Fairyland-

In your shoes, I would create a fiblet of some sort- her doctor wants her in rehab for a bit (maybe pulmonary rehab) or the house needs a new sewer line/termite tenting and she'll be staying in the all-inclusive senior apartment for a bit while it's uninhabitable. Rinse and repeat. 

Even if you were successful in selling AL in the moment, she'd likely forget the conversation and be angry when you assume she's going. 

Is your mom on hospice? They might provide you another level of eyes and ears on the ground when you are away. Just a thought.

HB

Fairyland

Stuck in the middle wrote:

She certainly needs your help.  She is fortunate to have you in her corner.

I amgoing toagree with you there!

Fairyland

Melanie12 wrote:

Hello! I’m sorry for your mom and wish her and you all the best! I don’t mean to scare you both my father had a terrible experience at those kind of facilities and he went to 2 different ones. Now keep in mind this was in 2020-2021 when covid was running rampant. This is just my opinion but I feel because of the “no visitation” laws they had back then…workers felt like they could use that to their advantage. I read so many horror stories about patients getting worse because of neglect from caregivers. That was the case with my dad. Nobody would ever our phones calls or return them. My dad fell multiple times due to lack of supervision…also I got a phone call telling me my dad wasn’t eating and was asked if I wanted to let him die “naturally” I hung up the phone in anger and brought him home straight away. With his insurance (Medicare) we were able to get a caretaker in the house. He got SO MUCH better being at home from how he was in the facility. Now listen this is just my experience but I wanted to warn you for the worst case scenario. Not everyone will have the same experience. I’m not sure if they still ban visitors but I highly suggest taking her somewhere where visitations are allowed…also ask about the number of residents and staff…you don’t want her crammed somewhere with not enough caretakers. I think if you found the right place this could be a beautiful thing for the both of you. I really do believe there are good facilities out there but we just need to be cautious. In the end I hope everything works out for the both of you!

I amso sorryfor whatyou have been through,and I willcome straightback if it doespearshaped.Keeping herhousefor now.

Fairyland

harshedbuzz wrote:

Fairyland-

In your shoes, I would create a fiblet of some sort- her doctor wants her in rehab for a bit (maybe pulmonary rehab) or the house needs a new sewer line/termite tenting and she'll be staying in the all-inclusive senior apartment for a bit while it's uninhabitable. Rinse and repeat. 

Even if you were successful in selling AL in the moment, she'd likely forget the conversation and be angry when you assume she's going. 

Is your mom on hospice? They might provide you another level of eyes and ears on the ground when you are away. Just a thought.

HB

So far so good - thisissuch a strange disease!She hasmore apathy than anything,ormaybe she isjusttired.I have been extraboring latelytoo so maybe she isalso understimulated.

Fairyland

Right I finally bit the bullet and announced that my DH and my manager want me home in the next month (they do, but have been absolute rockstars about not pressuring me, plus my work isn’t suffering much at all as it happens). She agreed that DH has been alone a long time (she never left dad alone for long when he couldn’t/wouldn’t travel anymore, though he was fine by himself back then and family and friends had him for dinner every night). So my suggestion that we visit some ALs, she didn’t even stop eating her lunch. Shall I make some enquiries for us to visit next week? Yes ok. Then back to watching the news.

On Sunday we have tickets for the symphony, which she loves and hasn’t been confident enough to drive to since dad couldn’t drop her anymore in 2015. She never made any friends that would go with her, and never asked/no one offered to give her a lift, so stopped that like most other things she enjoyed. I have taken her since it restarted in October. I noticed at every performance, the labelled minibus for the facility that is now my top choice, I’ll call it “Crestridge”, happens to be close by, and well...

Anyway, I asked if we could ride over with them on Sunday (it’s about a 30 mins ride).  While it is actually for their Independent Living people, they were very happy to take us and a resident is going to take us under their wing.

I told the intake lady that I understood that mum may not be able to go along in future if it’s too much hassle for the AL staff, but I thought it would help her feel better about the place.

I’m beginning to feel a little hopeful, as well as unexpectedly devastated! It is worse than sending my child to school.

Fairyland

Fairyland wrote:

harshedbuzz wrote:

Fairyland-


Is your mom on hospice? They might provide you another level of eyes and ears on the ground when you are away. Just a thought.

HB

Point taken, I will keep the idea of hospice on my list when one of the range of killer diseases she has progresses one bit!

Fairyland

We went on the bus to the symphony, the other 6 ladies on it were pleasant enough, but 2 pairs were joined at the hip chatting, so no interest in us newcomers whatsoever. One of the remaining people couldn’t fathom out where we had come from, as in where in the facility. The facemasks on everyone make it almost impossible to make conversation. §$¥* this stupid pandemic!!!

The marketer insisted on mum making a phone call to her (probably wants to check how bad she is and whether coming to look willingly) so of course it went to voicemail then hung up before she could leave the (wrong) phone number.  Anyway she finally called back with an appointment to visit for Wednesday morning- hurrah!

One interesting development was mum went and found the info she had got on her visit 2 years ago- now I see why she didn’t like the idea, it was to sell her house and buy into the independent living - she was struggling then with departed dad’s clutter, and had no idea she could move into AL without needing to sell the house for some time. 

So now I hope I can sell the assisted living concept I hope, because it is month by month.  She doesn’t think she needs assistance of course but the financial angle might be the ticket.  I think she will be ok in their AL, at least until the next step down in her VD progression.  There were definitely people in there who are further along, and less so.

Finally, her SIL wants to come and look as well- she is extremely fussy and stubborn herself,  and I can’t count on her not to point out all the problems and drawbacks, even though she knows this is a good idea (I think she herself should move somewhere manageable at least, too, but is too rigid about everything to cope), so I will “forget” to include her!

Fairyland

Today’s little challenge is, during mums annual checkup, to try to get the PCP to fill in mum’s 2 page admission sheet from the AL.  Hopefully he will do it on the spot, it doesn’t look too complicated!  Then I can try to expedite getting it faxed as AL requested  (do people still use fax here in USA!?) There is nothing special going on with her atm.

She has been investigating her new Grandpad, which is how I hope to be able to call her in the facility, and it is attractive, but it needs more thought put into it from me (I am its Admin and run it from my laptop). It sits very nicely on its charging station and the provided stylus helps with her dry skin not working well on touch screens. But I need to work out how to attach it before it goes walkabout! 

I laboriously typed in some family contacts, including scrounging up photos of them so she can see their faces as icons, but I think they may have to download an app. Even the grandchildren ages 19 and 21 may balk at yet another app!  I also put myself in again as an extra second contact (so I can see what the non-Admins see, which is different), and we have practiced calls but it’s a bit odd. I’m not sure how incoming calls to the GrandPad work, in non-video option. One important contact is her cranky SIL who will probably refuse to use it especially if video may be involved, and that is unfortunate because she is my local “boots on the ground” when I go home.

While  I tried to work, she tried out some features like the calculator (why?!?- she never would have used a calculator, ever), local weather and weather where other contacts are (nice since they are in other countries), radio stations, read some curated articles (nice!), and tried to use the magnifying glass and take a photo but we can’t get the camera to switch to front view- I think I will have to read the directions or call the help desk. I hope it’s not defective! But she always had a talent for upsetting anything electronic.

Fairyland

Not gonna lie, the visit with mum to AL was hard, she is polite as always but isn’t at all keen- I didn’t expect her to say wow, when can I move in! but I also didn’t expect I would feel so discouraged about it myself. She doesn’t expect me to stay with her forever, doesn’t want me to take her home with me, doesn’t want anything.  Except to carry on, day after day, little aware of the passage of time here in Groundhog Day limbo.

The couple of other residents we met seemed to belong in memory care, not AL, to me. The art etc. room had some gorgeous work, truly, and a lot of it.   

Both mum and I came home, ate lunch and shut down for the rest of the day on that topic. I’m hoping she can process, and I can feel strong enough tomorrow to get some forward momentum. 

Fairyland

So, we both cheered up a little over a couple of days, and I arranged to visit an activity which was 8.30 am on Saturday (a stretch for mom! She is not an early bird. “Are ALL the activities at the Crack of Dawn!?” She asked). 

The activity was a dog training club, every Saturday they parade up and down the front curved corridor, practicing sits and stays, with an occasional dive over to visit with us for a cuddle. She loved it!  However I only saw 2 residents who participated.  Lots of family members came, and one dog was part of that family.  So I can imagine mum will not remember to go, or bother, without any family to chivy her.  But at least it made a good impression on her.

I have also got my aunt to agree to go for lunch there with mum next week. I have asked her to call mum’s “Grandpad” and arrange which day.

I also talked with mum and she said she a) is willing to go to respite and b) might be willing look at another AL. My DH wants me to go home and help move house around Easter, so we may have to take whatever respite slots we can get in any of the 4 places I think are ok locally.

 It’s looking promising that she will agree to the respite, which I am presenting as a temporary vacation of sorts while I go home to move house.  I appreciate that many others here will tell me how lucky I am that she is compliant and together enough to even think about and discuss these things, I only write here in case there are others in early stages. She has always been a gentle soul.

She may not remember our discussions, and doesn’t retain why she needs to move anywhere, has no idea that she in fact doesn’t ever drive anymore and can’t be left to I.e. answer the door as she just immediately gives in to any pressure.  She always turns the discussion to her negative obsession, which is resentment at the houseful of clutter that dad died and left her in 6 years ago, and she hasn’t got the executive function to sort out the house, but won’t let me do it either.

Fairyland

Mum and auntie (mums SIL) went for lunch in the AL I had sort of chosen for her. As predicted, auntie turned up her nose at the food (normal even at best restaurant) and mum ate hers up but focussed on the one side that wasn’t good. 

Seems like the marketing lady accompanied them, eating v little of the food herself, and took them into a side room, to bombard them yet again with what the facility had to offer in terms of care and safety, which of course they don’t think they need. So they didn’t meet or see much of the other residents. I guess I should have gone along but I had to work. Beginning to feel that people mainly sit in their own rooms all day at this one.

Now my aunt is fired up slightly about the idea of AL, at least, and they are going to take a tour of another facility.  I have arranged it next week and will go along, and the marketing person will pretend she doesn’t know me (I have already visited and I like this one just as well).

Auntie is clearly thinking it is closer to her house so she will be able to visit more easily - her intentions are true and she has form for faithfully visiting elderly relatives- but I’m not choosing a facility because it is 2 miles nearer to her house!  I can’t see her driving herself at all much longer, her DH normally drives her but he insists he will not not leave his own home except in a box, so won’t even visit a facility! Probably thinks he will be locked in against his will. Also mum is very boring for auntie, mum doesn’t say much and they have nothing in common except memories of dad.

Despite being over 80 and with friends with late dementia, auntie has never visited a modern retirement set up (her aunt died in the 1990s),  neither of them understood that there are different levels of care (Independent, AL, memory, nursing home).  She worries all the time about what will happen to her, and she definitely has cognitive issues herself.

Fairyland

Phew got mum’s taxes done today. Also some progress on sorting out the mess mum made as custodian of her granddaughters’ investment accounts, tax is owed there too and a lot more than would have been, as well, if it had been managed correctly between her and the well-known Bank. But no one understood she didn’t have a clue, she was showtiming well.

She suddenly insisted on seeing the PCP about “overactive bladder”,  heaven knows why, it has been a problem for years, and then she tried to make an appointment using a phone number changed over 10 years ago (we got new area codes), and using the tv remote! That’s new and disquieting, I have read about it on here but never seen it in real life. 

 Plus, *I* have to drive and work so um yes maybe consult with calendar and chauffeur?!?  Appointment duly made for next week, but it will be a waste of time and money unless he can wave a magic wand and cure it! even taking new meds is hard, and she won’t I.e. limit her fluid intake in the evening (tried a few times, she just carries on pouring her cup of tea), or remember to do any exercises etc.

Everything we do - what time is it? What day is it? what, we have to go somewhere? Why? why are we going there? Why are we here?  Why do I have to take this med? Repeated daily several times. And I know it will progress.

Roll on Tuesdays appointment at AL mark 2! then I will say choose mark 1 or mark 2, and arrange a “respite” with no intention on my part that it be temporary. I have already figured out which furniture will be moved, mostly, when the respite spell is up.  That’s the plan, ye gods are laughing no doubt!

Fairyland

Today’s visit to AL#2 went quite well, food was all free choice from menu and good-to-ok (mum loved hers and ate it up, mine was fine as if it matters about myself at this point!), auntie turned up her nose as some of hers so no change there!), and the other residents seemed fully or somewhat “with it”. mum and Auntie seemed to see it as possible, anyway.

Now I have such a headache, and feel sick-can’t help wishing things were different, but here we are.

Argh! Why can’t we either stay healthy, then just drop dead one day, or recognise and accept we are becoming a worry and plan and sort our own life out to our own satisfaction !?

I do feel mum needs to get in somewhere like this ASAP, because I think she could actually make some friends.  Several of the meal tables had groups of people, contentedly eating and chatting, and others sitting alone, also seeming happy with their own company.  

The staff and other residents were very nice and it didn’t seem like it was just a show for our benefit, and we were treated like a normal sight, just people coming in to visit like it is a typical sight- it has seemed a bit strange everywhere which I put down mainly to CoVID.

LeastFavoriteChild

Hi, I’m new here. How did you get a caregiver thru Medicare? Mom has been adamant about NOT having a caregiver that isn’t me (including my sister and brother as they rarely call or visit). I’m still trying to work full time and take care of her but sometimes I just need a minute. Really, mom doesn’t need a lot of care I can’t give her but isolation (the pandemic has been very cruel to her brain) is a problem. I’m looking for someone that could “stop by for a chat” once in awhile to check on her and, frankly, entertain her for an afternoon or two a week; something for her to look forward to. I have no family resources.

Fairyland

Hi LeastFave,

I wish I knew, in fact I don’t think Medicare would cover a caregiver, but maybe someone will coma along and tell you.

I have been looking after my mom alone myself with no help at all, and working full time, and having left my own life behind thousands of miles away, for over a year including new house I have been inside briefly twice, my long-suffering other half, 2 late teens who I haven’t seen for over 6 m, in-laws I like who are very old, my church for which I am a trustee and was helping them a lot with pandemic problems, and very elderly dog who is missing me a lot. 

If I had to keep doing this, I would contact the local agency on aging and ask for recommendations for companions.  I already have control of mom’s finances though, and would  use her money to pay for it.

Today’s breakthrough has been I am taking mom to look at “which AL apartment she would like”. It’s like a toddler, I told them only show us 2 and the question will be which one, not whether she is going to go or not! I’m carrying on like that is all decided. Wish me luck. She thinks it’s temporary. It’s not.

Last night my aunt told me I am doing the right thing and it is for moms benefit. I would prefer to have her nearby to me, but that is just not going to work at this moment in time.  If she stays stable we can rethink in a few months.

And I have realised my sacrifices are not making mom better off- if she moves to AL now she will actually get something out of it, rather than wait until she is too ill or demented. I can’t provide enough motivation or energy to keep her stimulated, as well as deal with all the chores.

I hear you, the pandemic has put a tin lid on it!.

Fairyland

She picked an apartment, on a sunny corner, with 3 windows.  It’s lovely. She will move in next Wednesday. 

We signed everything and she had the nurse intake interview. A few issues with the mental tests, and some questions about paying pharmacy co-pays, for example for antibiotics, as they normally get invoices and write checks and mom finds that hard partly due to arthritis, partly due to confusion with dates. To be fair, they are written in a different order in the country she has been with me for a few months recently. The staff liked getting her to talk to hear her accent, so maybe that will help.

I feel like she is physically above average but not hyperactive or difficult, but mentally a little sub par for them-she doesn’t need help really with any of the usual things, but more reminders, and noting and checking if she doesn’t turn up for meals which say they will do. So we shall see! I will stay on a couple weeks to try to make things run smoothly and deal with snags. Then she will be left to the tender mercies of assisted living.

The coordinator will visit tomorrow to measure furniture. I think we need to buy a couple smaller things. We will pay them to have stuff moved, I can’t do it.

Someone recognised her passing by in the hall, a nice friend we enjoyed going out for lunch with last year- she was living independently then but now looked terrible, and now using a walker so who knows what happened to her, but it was a turn up for the books for mom. She seemed to recall the person well, but maybe I was helping her by scaffolding too much.

I have only told my older daughter so far, I need to process it myself before telling anyone else. It hasn’t occurred to her to let anyone know, but she hasn’t forgotten!

Lee09

Glad I saw this post. Thank you for sharing this. I’ve been searching a lot lately. While I was searching I found this geometry dash

towhee

Be wary of undefined links. Reported above post.

towhee

LeastFave, welcome to the forum. In the future you will get more responses if you create your own topic thread. Click on the green add topic button at the top of the page.

I am sorry to tell you that Medicare does not cover companion care. Medicare only covers task oriented care (usually bathing) for only a short period, usually after a fall or hospital stay, where there is a temporary decline.

What you are looking for is usually private pay. Medicaid will also cover some home care, again usually task oriented, or it may cover some adult day care hours. This is usually called a medicaid waiver program and availability and coverage varies by state. Your mother would have to qualify both physically and financially. You can google for basic info, contact the area agency or council on aging as previous poster suggested or your local Alz assoc,

Fairyland

The moving company had no availability until April Fool’s Day. What a day to move to the next phase of life.

Mum and I are both depressed. She seems to have given up, is wandering around aimlessly and went to bed early. I was so exhausted I slept all afternoon.

We need to go out and find some curtains for the place, the coordinator said she would measure and send the measurements for the windows but didn’t. So I guess I will have to wait till Monday to actually buy them, but I guess browsing with mum will be good in case she can tell me she likes or dislikes anything strongly. I’m kind of surprised they don’t know measurements. 

The windows have white Venetian blinds but it is south-southwest facing. I think some curtains she can shut in the afternoon will be a good idea. She struggles when the sun comes in her face in her existing house.

We also need to buy a smaller table, for her to have her morning tea. She is English. I think that the morning teapot ritual will be the last skill to go!

And then to try to declutter the contents of the furniture that is going to be moved, with someone who can’t make decisions.

Unfortunately we both hate shopping and decluttering! Fun times.

May flowers

That is sweet about her morning tea - my FIL’s morning ritual was a cup of coffee. We sent his favorite coffee cup and some of the caregivers made sure he had his coffee in his favorite cup which I thought was nice. 

Good luck with the decluttering and move. We went through all of that last year, the move, estate sale, selling the house, and today we are actually getting rid of the last of the furniture as he’s back with us on hospice. It is hard sorting through mementos, even though in our case he was long past caring about it. 

Fairyland

Thanks May Flowers! And good luck to you too, it just gets harder and harder doesn’t it? I thought having kids was bad and I was/am incompetent with them. So Old Age said, hold my beer!

Now she says she just wants beige curtains and doesn’t care. Nevertheless, poles and curtains must be selected and the facility will install them for us. I’m going to take her out anyway and see what’s what. It has been a long time since we needed anything new, the opposite is the problem! If I can get an idea, then I will leave her home next week and go buy the correct sizes without encumbrance! 

I am in the fortunate position that dad made enough for investments so we don’t have to rush to sell the house. That has been my story to get her to move, “the house is staying as it is and I am keeping it as is, I want to keep it”. 

That house full of “dad’s stuff” has been a huge drag on her for years, there is so much clutter still and she agonises over each item, like leaflets from the newspaper. Executive function is where she is damaged most I think. Her memory is not bad, if you give her time to think. She has recovered in that department since I moved in and stopped the constant scam calls, drove the car (she always hated driving), dealt with heath appointments, finances and household repairs etc.-took the pressure off. But also disempowered her sadly.

I spent an hour persuading her to throw out i.e. every recycling flyer from the City, carefully saved, dating back to 2012. This is approach not going to work in the days we have left. Probably once she is there I will have to bring over small items.

Her SIL “helpfully” said, if mum didn’t like it she would drive straight over and pick her up,  Mum “could stay in her basement” where her own mother used to live. thanks a bunch auntie! But I won’t be here to save the day, so hopefully auntie will not have to deal with that disaster of her own making! anyway mum just grumbles and rarely acts.

I have made a point to have dad’s lift-to-stand recliner I bought him included in the move (he died before he got much use but it did make his last weeks at home nicer for him) , Mum doesn’t like sitting in it, but uncle who is not well either, will be much more comfortable if visiting with auntie - it’s maybe a way to entice him! To try it out.  

I think they will be surprised how nice it it, and I hope mum will have more headspace once she settles, without the house to constantly fret about.

yarnball

Thank you so very much for sharing your journey!  We are at this place as well.  Mom wants to "be independent in my own home," and that is not going to work much longer.  I so appreciate your story and sharing it with us!!!

Fairyland

Dark gloomy and rainy, matching the mood. Had a lot of paid work to do and hoped mom would continue as she had started in the bedroom. Nope, just lots of ineffectual moving irrelevant items around and putting them on the bed, so all had to be removed back to square 1 so she could GO to bed at night. Today we went to sign all the intake papers including the huge check for move-in fee and first month. She was very dopey and barely could sign her name.

Tonight she announced she doesn’t want to go to “that place”.  Why can’t she stay here? So I asked why, “dunno”, I sang the same old song yet again, I have to go to my home, and help DH move house, and keep my job, and she needs to get better from her stroke, do the exercises and it’s easy there, can’t leave her alone in case of another stroke, there is a crime wave, blah blah.  She is grumpy and uncooperative but soon nodded off again.

I have arranged for tomorrow off work so I can move the packing on, movers come Friday at 8 am.