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AL living / resistance to assistance
leahm
Posted: Monday, June 10, 2019 3:56 PM
Joined: 2/15/2017
Posts: 29


Mom has been in AL for over three years.  She has been in the same AL for over two years.
She recently had a bad UTI which required hospital and then nursing care for almost a month.
Her required level of care has been raised (doubled!) with assistance in toileting, bathing and dressing.  She also has a dog with her.
She is resisting assistance in all of the above.  If you are familiar with AL you will know that this amped level of care will now cost over $8k a month 
As dementia goes of course there is no reasoning with her.
I’d like to get off the ride where I feel frustrated with her unwillingness to accept help.  And why do I still keep on telling her and hoping for signs of gratitude for the flexibility of those caretaking for her?
I guess I’m frustrated with myself.  
She is unable to live alone (what she really wants) and will not accept anything less.
I don’t know where to put this frustration (and anger).  She has more than most and it kills me that she tells me how she has nothing.  She has the luxury of AL, she has the luxury of her young grandsons and her SIL, and AL is bending over backwards to help her keep her dog.  Note I didn’t include myself in the luxuries - I’m the evil daughter keeping her in her misery.
The question is this, maybe :  how can I land in a big pile of compassion and stay there?  
Every visit feels soul-sucking trying to appease her.   

JJAz
Posted: Monday, June 10, 2019 4:01 PM
Joined: 10/21/2016
Posts: 2303


my repeated responses would be, "I'm sorry Mom.  That's awful.  It must be so difficult for you.  I cannot imagine.  It's really rough."  Then try to divert.  It's all you can do.
zauberflote
Posted: Monday, June 10, 2019 5:14 PM
Joined: 10/24/2018
Posts: 139


Leahm that sounds horrible. Hard to bear while it's happening, and hard to live with at other times. Right here on these boards is your big pile of virtual hugs and compassion. I too may be in your shoes one day. (Mom 91, in MC, not yet seeing personality changes, doubly CONtinent, much language loss) but very often her slightly merry, mischievous self-- and if she can't locate those, love love loving as always. This may all change in a flash...)
GothicGremlin
Posted: Monday, June 10, 2019 6:02 PM
Joined: 4/7/2019
Posts: 18


I'm almost exactly where you are, leahm. It's not my mom though, it's my sister. My response is similar to others here -- "I'm sorry, I can only imagine how difficult it is for you." And then I try to move on to her cats because they make her happy. 

Her filters are starting to go, and she's often not aware when she says or does something hurtful.  I know it's not her speaking, it's the AD, and I try to let it roll off.  For me, talking about it with the rest of our close, extended family helps, plus I see a therapist periodically.  It all helps.


Rockym
Posted: Monday, June 10, 2019 6:02 PM
Joined: 1/17/2016
Posts: 873


leahm, AL is simply not the proper placement for someone with dementia.  I'm sure you have read this on these boards.  My experience was that after mom was in two different ALs and the cost was sky high with the care being subpar, I finally moved her to an MC.  It was night and day.  The caregivers knew exactly how to give her the help she needed and knew when to leave her be.

She was higher functioning then many, but after a stroke was in a wheelchair and needed the caregivers to toilet her, get her to activities and meals.  The moment she saw that these caregivers were so good at what they did, she became cooperative.  I was amazed.  Also, the community I moved her to was a smaller MC only.  No more of the larger IL, AL and MC corporations.  The cost for all her care was inclusive and part of being in MC.  No more charges for one extra pill.  We went from $9,000/month to $5,500/month.  Perhaps looking into MC is the way to go.


angeldb
Posted: Monday, June 10, 2019 7:58 PM
Joined: 2/13/2018
Posts: 10


At a loss what to do? Mom is 93 with approx 6th stage ALZ, diabetes, BP issues and 3rd stage renal disease. Dad is 97, insulin diabetic, macular degegeneration, BP issues and the beginnings of dementia. Mom was diagnosed with ALZ in 2012. Dad has been in denial ever since. My 70 y/o brother and I (56) are their caregivers. God bless my brother. We have always been close & it helps being in this together. Mom is progressing; no longer able to use a fork to eat, needs help with toileting/bathing. Three weeks ago she began to exhibit bowel incontenence alternating every other day with constipation. It's a vicious cycle. We have her on a 1/2 laxative, probiotic and keep her as hydrated as possible. Hospice is here once a week to monitor & help me bathe her. In the last year she's become very combative to bathing & when she has a bowel accident she is very resistant to cleaning her up. It's an every other day fight. My father, who is devoted to her tries to help & today he was in tears during her outburst while I was cleaning her. I really don't want to place her, but I'm concerned for her (trying to avoid the dreaded UTI) Struggle to keep her clean, and my dad getting worn out further from the stress. Also, he's still pretty mentally sound & I'm afraid if we do he'll give up.we are in a horrible catch 22. Mom is less verbal, mechanical dysphagia beginning and sliding into Stage 7 at some point. It would help to hear from someone whose been through something similar and any suggestions. Thank you in advance.
King Boo
Posted: Tuesday, June 11, 2019 7:10 AM
Joined: 1/9/2012
Posts: 2956


angel, copy and paste your post and start your own thread, your question is lost here tacked onto another person's thread.

This is a very common scenario what you report.  None of us placed because we wanted to, we placed because we had to.  Care needs drive the decision making, incontinenance is one of those turning crisis points (along with exit seeking, night wakenings) for placement.

This disease can take an entire family down. Read the many posts that receive advice about placement, it will be helpful.

LEAH- Assisted living is just that - assistance.  It is not dementia specific care, it is designed for the gently failing resident who needs A LITTLE help with meds, housekeeping, and meals.

Patching together extra care by paying at the AL level is a disaster, because they are not a dementia specific provider like MC.  Probably don't know how to redirect, identify crisis for a memory impaired person, etc.

Move her to Memory Care, preferably one with a good attached nursing home.


Janice.alone
Posted: Tuesday, June 11, 2019 8:22 AM
Joined: 10/12/2018
Posts: 30


Leahm, "land in a big pile of compassion" ??    hahahaha    That would probably require a whole lot of mind-altering medications - not a good idea.     And you will always be the evil daughter.   My mom and I had a great relationship all our lives until the last year.   When she started seeing me as the enemy, I backed off from visiting as frequently.  I had a couple other folks do short visits and give me reports.   The situation was still stressful, but not as bad as personal visits which always included the insults and anger.    As long as your mom is being well cared for in AL and has the other relatives helping with her care and the dog, just bow out for awhile.   Make your visits shorter and less frequent.   It won't change her attitude towards you, but less exposure to her will help you a bit.  You realize by now that you simply cannot appease her no matter how hard you try. 

Also, I agree with some of the other posts that are recommending MC.    I learned too late that AL is not the ideal situation for dementia patients.   But, with a little dog involved, your options are limited.   And two years at the same location is a good track record.

    Good luck - don't loose your sanity.


littlebird
Posted: Tuesday, June 11, 2019 9:40 AM
Joined: 4/16/2019
Posts: 3


leahm, You just described my exact feelings. My husband and I are caring for his 85 yo Father with dementia. We moved him to Missouri from Florida to live in a bungalow next door and it has drained almost every bit of life out of me for the last four months. The most frustrating part of it is that he has the money to pay for the best care facility but won't let go of it. As you say about your Mom, he also has much more than most.

I feel as though my 42-year marriage is suffering because my husband and I are arguing constantly out of frustration. We've always had a wonderful relationship with him and I hate the thought of losing that, but I just don't know what to do anymore. He doesn't think there's anything wrong with him and vilifies us to everyone he talks to. I know it's the disease talking, but how do you keep your sanity while trying to explain something he can't understand and endure the snarky comments?

I wish I had an answer for you, myself and everyone dealing with this awful disease but I don't. If you find that big pile of compassion, can you let me know where that is - I'd love to join you!


Eric L
Posted: Tuesday, June 11, 2019 10:41 AM
Joined: 12/5/2014
Posts: 996


Littlebird - It would probably be best start your own topic on this, but one of the golden rules with dementia is that once they get to a certain stage, they are no longer able to be involved in any of the decision making process regarding their care. If you look through these message boards, the vast majority of the people that were placed in a facility were placed against their will. Chances are, you will never be able to convince him that he needs more care because he is convinced (because of the disease) that there is nothing wrong with him.

If you haven't already, the first thing you should probably do is make sure all of the legal paperwork is in order. Contact a certified elder law attorney in your area and make sure that you get power of attorney for medical and financial decisions. The attorney can guide you with all of this.

We never placed my MIL (she's on hospice right now and is in the last stage of the disease), but I feel like this story is about as close as we had to doing something against her will. Shortly after my FIL passed, MIL told us she didn't like sleeping downstairs all alone (it took a bit of finessing to get it out of her). We kind of figured that since she was barricading doors and windows, but it was good to know. My wife and her brother started taking turns sleeping on the couch (and it did help). At that point, we thought she still had many more years left and I told my wife "There is no way that we can spend the next 10 years of our marriage sleeping apart". It sort of kills that whole spontaneous intimacy thing. Anyhow, we wracked our brain for solutions and one night the most obvious solution dawned on us. There was a bedroom across the hall from MILs room that we had been using a playroom for the kids. We would just move our bedroom downstairs and put the playroom stuff in our master bedroom upstairs. Easy, right?

When we brought it up with MIL, she got angry with us. She told us she didn't need anyone sleeping downstairs and that she was fine. By this point in time, someone had been sleeping on the couch for at least 6 months. She also told my wife that she was a horrible mother for abandoning our children (in the same house!). I think my wife actually told her brother "fine, we'll let her be downstairs alone". We already knew that we were going to move, regardless. We let her sleep alone for a few nights and she got back into her same habits of barricading doors and all of that stuff. Not that it made a difference for MIL, but after the wandering and barricading at night, my wife told her that we were moving downstairs because it was obvious that she needed someone. She still wasn't happy with us, but she got over it fairly quickly.

This was a couple of years ago and we were still sort of newbies with this disease. In retrospect, we should have just swapped the rooms and if she asked, we should have told her a fiblet "Oh, we are getting new carpet upstairs and we need to stay down here until it's done" or something like that.



angeldb
Posted: Tuesday, June 11, 2019 11:45 AM
Joined: 2/13/2018
Posts: 10


Dear Boo,

Thank you for your kind words of wisdom. First, I'm new to the site and was trying to post from my smart phone which I won't be doing anymore. My apologies for the misstep. I'm on my laptop today and the buttons are more accessible.

I agree no one wants to place their loved one. At this point I think it would be detrimental especially to dad. We are going to try and keep working with mom. I called the Hospice social worker this morning and she is going to bring it up in team meeting tomorrow to see if management/RN's have any other suggestions. 

Prayers and hugs to all here.


King Boo
Posted: Tuesday, June 11, 2019 1:15 PM
Joined: 1/9/2012
Posts: 2956


not a problem at all - you will just got a lot more answers on your own thread, mabye even find someone who is going through exactly what you are.

posting from smartphones is awkward - I just texted my contractor by accident instead of my daughter - told him h e looked beautiful in his dance costume, of all things!!!  


littlebird
Posted: Tuesday, June 11, 2019 1:58 PM
Joined: 4/16/2019
Posts: 3


Eric L, Thank you for your advice. It's easy to get carried away with your own story when replying!
SunnyBeBe
Posted: Tuesday, June 11, 2019 3:09 PM
Joined: 10/9/2014
Posts: 569


I found that it was quite frustrating when my LO was in a regular AL, and, her needs were for a MC unit.  Once in MC, she felt so much more comfortable.  They didn't try to convince her, argue with her, etc.  They just managed her care and needs so well. They are trained to manage her care and that's what they did.  I'd explore MC for her.  And, try to lower expectation of her getting on board, accepting care or understanding reality.  Why does it matter that she believes she can live alone?  This is something in her mind that is out of reality.  I'd try to let her have her own thoughts, but, not play into disagreeing or proving her wrong. Trying to convince her of the truth is not very feasible.   That rarely happens.  I will say that MC and meds for anxiety and depression brought my LO significant contentment, almost from the first day she entered. I hope you can find her the right fit.
 
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