Family not all on board

Saya_G

Placing a LO in a care facility is not easy (pray for me tomorrow is the day). 

As many of you that have so kindly supported me thru our family’s tribulations know, I have not always known when to say when. It has been a struggle.

My mom’s full time companion (my sister) broke her hip. But is recovering well. That said, even before her fall I was being told by hospice that our mother wasn’t getting the care she needed. Sis has many tasks that she simply refuses to help with (changing depends, helping mom dress,  cleaning  or cooking). She has also been complaining regularly that caring for our mom was more than she sign up for - in fairness, caring for someone with dementia is not a walk in the park!! 

I have been helping with all of the management of both their medical, served as both their chauffeurs for their excursions over a few miles, cleaning their house, buying supplies , etc. Hospice now gives mom her baths (I used to) and they also preps mom’s weekly meds for dispensing. 

Problem is, even before sis’s fall, mom wasn’t getting her meds on a regular basis. As for meals, mom was getting one or two ensures a day, and eating her one meal a day at a restaurant. (Hence why hospice was concerned.)

Add to that that moms knees keep buckling under her, greatly increasing her chance of falling. And that my sister weights just over 100 pounds, while mom weights 170 - meaning sis doesn’t have a chance of preventing a fall - let alone helping her up after a fall - and that was before sis broke her hip!

Now consider that it’s very possible that my sister has dementia herself, albeit undiagnosed!

So, after much consideration, me and our other three sibling have decided that it’s time to place our mom. Even my sis has said that it is probably time! 

Problem is, sis has changed her mind! Says we are robbing mom of her life! Says if she hadn’t broke her hip this wouldn’t be happening! Truth is her broken hip did hasten the placement, but most likely only by a month or two at most!

Sis and mom are very close, they have lived together for about eight years - she lives here (our other sibling live out of State). She can make this a positive experience for mom, or make it go bad one! I think she is going to make it hard! 

She has truly convinced herself that she can take care of our mom, she also insists that she always gave mom ALL her meds, on time! She says that mom threw them away! And that she can’t be responsible for mom throwing away her meds. When I pointed out that the meds dispenser was full and untouched, she refused to admit that it was on her to give mom her meds!

Soooo how do I convince sis this is a good thing for mom?

Saya_G

GothicGremlin

Hi Saya - is your mom going to be placed in assisted living or memory care?

I can't speak to what goes on at assisted living, but I can with memory care.  I just placed my sister in memory care recently.  I agonized over it, but in the end decided it really was what would be best.

Here's why --

- socialization - at the memory care facility where my sister is, they keep residents engaged most of the day.  Games, exercises, other activities happen every day.

- structure - meals and snacks are scheduled, activities are scheduled, movies and bedtime, all scheduled. It's almost like being in school.

- staff see Peggy 24/7. If she were to fall or have some other health incident,  they will notify me, and start whatever process is needed.  Like your mom and your sister, there is no way I could help Peggy up if she fell. She's taller than I am, and outweighs me by about 50 pounds.

- staff makes sure she's showered and they help her with toileting. Sometimes she can manage, but often times she can't.  They check her every two hours so most accidents are prevented.

It's difficult for one person to provide that level of care, particularly if you work (like I do).

One thing I noticed right off the bat was that Peggy's stress level went way down right after her move to memory care. I think it was because she was trying to remember tasks she thought she should be doing, but couldn't think of them.  The simpler environment really seems to help her. My stress level has gone way down too - side benefit!

Everyone is different of course, but this is what I'm seeing with her, and I'm glad she made the move.

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Saya_G

Hi Gothic Gremlin,

Thank you for your reply. The facility in not assisted living, but it is not memory care only either. Although over half of their residents have dementia.

I think the socialization is an important reason for my mom going to a facility as well. She has been on a waiting list for months for the only senior center in our area! Due to Covid concerns they are very limited in the number of folks they can take. So watching TV or sleeping are her two main activities. She has always loved bingo, so maybe that will bring her out to meet other residents.

The one thing she has always said was that she never wanted to go to a ‘home’! I hope she can for give us, but we think it is best. I just wish my sister was on board! Her nagging to my mom, even with my mom having dementia, could make my mom hate it, and mom rarely changes her mind once it is set. 

My bro visited over thanksgiving, he talked a facility up during his whole visit, still sis could ruin her outlook by being negative, wiping out all of my brothers good vibes aboutgoing!

Glad your sister has found a supportive and active place! 

Saya

Saya_G

Victoria2020,

Placing mom in sis’ absence will definitely be easier than if she were here!

I have pushed to get my sister check for dementia while in tge hospital. She made no sense the first few days after surgery. She is still confused, much as she was before she went in with the broken hip! But still better. 

Sadly, although they all think she has some level of cognitive issues, since she’s there for her hip, there’s little they can do! At least that is what they tell me. Especially with the insurance company she has! They have been trying for five days to get a rehab that will take her - all refuse due to tge insurance company she has (Cigna HMO). So little to no help there! 

I’ll try to keep you all posted!

Prayers appreciated 

harshedbuzz

Saya_G-

Good luck today. I assume you have chosen well and that this will go much more smoothly than you dared to hope. Fingers crossed. 

Convincing sis might not be in the cards given her emotional investment in her role as companion and her own cognitive shift. This role is where your sister finds her worth and her security; it's no wonder she is fighting this with everything she can muster.

What's the first thing we old timers tell the newbies? That's right "don't try to reason with a person who has a broken reasoner".  Your job one is doing right by mom. Allowing this situation to continue is counter to that. 

Some approaches-

1. You could pull rank. Perhaps not the kindest approach, but certainly one that can work on certain personality types. You could tell your sister that as POA you are legally and ethically obligated to put mom's welfare ahead of any other factors in making a decision around placement. You could explain that hospice reported poor care (meds not taken/Depends not changed) and as professionals they are mandatory reporters to APS and you don't want to see you both in legal trouble.

2. If you insist on breaking the cardinal rule of Dementia Fight Club (see above), you could use the same lines of reasoning we offer anyone making this difficult choice-

"You can go back to being mom's beloved daughter while someone else takes care of all of the hard stuff"

"I worry about the toll mom's needs are taking on you. We can't risk you having another injury. Mom would be devastated if her care hurt you."

(To this end, the socialization piece probably won't fly with mom because sis thinks she's got that covered.)

3. My guess is the best approach is firm but loving. Thank your sister for the companionship she offered thus far. Gush about how much mom loves and depends on her. Recognize the efforts she made in keeping mom in "home" as long as she did. Gush some more. Tell her you are deferring to the medical experts who have ordered this level of care as being what is needed at this point in the disease progression. Remind her that she can continue to be mom's companion at the facility so long as the staff feels her presence is not disruptive to mom's well being. 

To that end, as a bit of administrative housekeeping, do not give your sister authority to take your mom out of the facility as I could imagine her bringing mom home and upsetting her. I would also have your sister follow the oft recommended protocol of no visits for a period of transitioning to new routines and caregivers/settling in. I might even chaperone for the first couple visits in order to keep things light and make sure sis doesn't interfere with settling in. If she does act in ways that upset mom, then sis comes off the approved visitors list- you can blame this on staff. Again, with the deferring to experts.

Good luck. 

HB

harshedbuzz

GothicGremlin wrote:

One thing I noticed right off the bat was that Peggy's stress level went way down right after her move to memory care. I think it was because she was trying to remember tasks she thought she should be doing, but couldn't think of them.  The simpler environment really seems to help her. My stress level has gone way down too - side benefit!

I just wanted to comment on this. 

I have a dear friend whose 95 year old mom clearly has some dementia. She'd lived on farms all her life and was someone who had a tremendous amount of responsibility whether as a child doing chores, a wife with young kids running a household and supporting the farm. As dementia set in, she became unsettled in her own home because she had a sense that there were things that needed doing and she wasn't quite sure what they were. Her RN daughter suggested an AL in the early phases and the dear lady feels as if she is staying in a "spa hotel". The sigh of relief when she moved in was audible in the next town. It's been a real blessing.

It's funny, she visits her old home weekly and goes on outings with her daughters and her husband but loves going back to the hotel at the end of the day.

loveskitties

Saya, prayers coming your way for an easy transition with your mom and more for dealing with sister's resistance.

I think framing your response to her desire to continue being mom's caregiver, you need to let her know that you do not see this as a failing on her part, but as more than any one person can handle.  Even though many folks have said "I don't want to go to a home" it was said without the thought that dementia would be the reason to be placed there.

I truly believe that no ones LO would want their family to have to deal alone with the issues of caring for a dementia patient.  

As a loving daughter and sister, you are making the right choice...because you care about their well being.

Hugs,

Marie

Lor2014

I don't think you will be able to convince her, so it's best to be firm and inform her. You could cite statistics on how caregivers sometimes die before the patient because of the stress, she needs time to mend her broken hip, your mother is not getting her meds, some other risky dementia-related behavior on your mother's part. You know your sister so think on past events what has worked best.

My guess is your sister is dependent on your mother's presence, whether for companionship, purpose, or emotional support. Just as it will take some time for your mother to adjust to her new living arrangement, your sister will also need some time. After 2-3 weeks of the new arrangement, they will both be fine. But realize, they will both be very edgy and it may be best to leave them alone while they adjust. Good luck. Not easy.

dayn2nite2

The food issue alone is reason for placement.  Your mother enjoys 3 meals now, why would you send her back to your sister who is starving her with 2 Ensures and 1 meal of Mexican food per day?

Tell your sister she is now fully incontinent, which should solve the problem because your sister refuses to help with that.  Your sister, whether she has dementia or not, has an eating disorder and your mother is being neglected due to her lack of care.  Case closed.

Saya_G

Update: I took my mom to the facility today. She was quiet; but accepting – at least for now. I think she has some awareness the situation. She did say,’ this is an old people’s home.’ I explained that it was also a rehab facility and that it was a place that helped many folks of all ages. 

I did tell a bit of a white lie. Honestly the plan is that Mom’s is a long term placement; we just can’t give her all the help she needs. I told her that with her knee issues, we can’t give her the care she needs, and that we are afraid that she could fall and hurt herself, like my sister did (sister broke her hip recently). I added that I’m hoping the doctors and therapists can help make her knees better. All true so far, but there are other issues that would have been harder to say out loud – a white lie by omission. She looked sad but accepted that answer. 

I am concerned about her roommate. The gal has been there for over 5 years – one of the facilities longest residents. She does not have dementia. She looks healthy overall. 

I had asked them to place mom with a kind, welcoming and supportive resident. They said no problem. They insisted this gal was perfect! As I was moving some of my mother’s things in before the actual move in, the gal informed me that mom could watch her TV, but that she would select the shows. I said my Mom really likes the Game Show Network, do you ever watch game shows? Her replied, I hate game shows. Actually both residents in the room can have their own TV, but the rooms are so small that two TVs will be like ‘dualling TVs’. That said, we are going to bring my Mom’s TV and set it up with headphones so she can watch what she wants without causing issues.

Then the gal informed me that she would NOT have anything to do with my mother outside of their shared room. She continued, ‘In the dining room, I sit at a table for four, and already have three other ladies that sit with me.’ ‘My rule,’ she continues, ‘is that if you develop a relationship with a roommate outside of the room itself, you get sick of each other – fast.’  

‘Well okay then,’ I think to myself! Not exactly the welcoming and supportive roommate I had hoped for, but I guess we got to deal with it! One of the admins at the facility said if they don’t get along they’ll move Mom. 

Harshedbuzz,

I will pull rank with my sister if I need to! That said, I did call in support, I called my other sibling and told them they needed to be on standby to back me up if needed. 

My sister did call today, I told her that I had moved Mom into the facility. She agreed it was probably time. Problem is, since I suspect she too has dementia, I already know that her opinion can change at the drop of a hat, and she would fight to the death arguing that she has ‘always’ felt whichever way the wind is blowing! It gets frustrating – but like a reformed addict, I will try to take it one day, one hour and/or one minute at a time! 

As for giving her authority (POA), she already has that!!! When my mother’s POA was written sis did not have any signs of dementia! We added extra names/people in case something happened to the main POA (me). I do not plan on reminding her that she also has POA! 

GothicGremlin,

The facility my Mother’s is staying at is definitely not like a ‘spa hotel’!! My mother has enough to self-pay for just a few months, after that she has to go on Medicaid. I checked out several facilities, most wouldn’t even give me a tour because Mom would eventually be Medicaid. 

The one I went with does NOT have a great review! That said, it does have a new owner; the reports are all positive on the changes that have taken place already! Also they are planning a total remodel! Besides that they have a large staff – one of the admins said that she left the facility a few years back, she returned due to the promises of what is to come. 

I have a friend whose mother is at this facility, his mother is non-communicative, but he insists that they treat his mother wonderfully! (He has a camera in her room, we plan to get one as well.)

Soooooo I’m hoping we made a good call on up and coming improvements.

LovesKittens,

First, I agree! Kittens are the best!! 

Thanks for the prayers and kind words! I need all the support I can get! 

Lor2014,

I think you are correct; my sister does depend on my mother to give her purpose! She has one child, and that child does not talk to her – so due to their not talking, my sis doesn’t see or have any type of relationship with her grandkids either (she has seven grandkids). They haven’t talked for about 10 years!

So yes, our Mom is her life – she loves my Mom – but she is who she is! And I think she has, at the least, a mild case of dementia. 

Makes it so hard to communicate or discuss things with her. 

For example, she is in the hospital, fell broke her hip while in her PJs! She asked me to take her PJS home – they are her favorites, and she didn’t want to lose them!  Ok, I did! Since then, she has asked me at least 20 times where her PJs went – she always goes to, ‘I think someone stole them!!!” I explain I took PJs home for her, because she asked me to!!

I know I will be asked again until she goes home after rehab!! 

Dayn2nite2,

I agree that the food intake is and has been an issue! 

At one point I set up meals on wheels for her and my mother – after the first meal, my sis insisted I cancel them! Said the food tasted like crap! I explained that they do not use spices because they cook for so many folks that they can’t add spices. I suggested she just add some salt and pepper. Didn’t matter – she fed them to the squirrels! I canceled Meals-on-Wheels – no sense in wasting the food they could give to others! 

I’m just hoping that sis eats better after her hospital stay – right now she is eating at least a bit of each meal! (I did warn her that she would not like what the hospital staff would do if she continues to send her tray back untouched!) 

Thanks to you all for your replies and support! I know that there will be bad days with my mother having been placed – I’m just hoping I am strong enough! 

Saya_G