Hi there. I'd love some input on a situation I'm currently encountering with my mom. She's 71 and lives in a Continuing Care Facility, in "Independent Living w/ Services." She gets 1 meal a day, has staff handle and administer her medications, and other than that is on her own. She has Epilepsy (controlled with meds), and a dementia with Parkinsonism. Not sure if it's Lewy, or Parkinson's Dementia or a combination of different types. But it is not AD. Her memory isn't great, and is definitely selective. However, she has the ability to remember a promise I made 2 weeks ago if it is convenient for her .
Her cognitive problems is a moderate to severe loss of executive function, reasoning, language, and general slowness of thinking and moving.
She falls a LOT. She's always had issues with balance and has been generally uncoordinated, even as a young adult. But man, it's gotten really bad now. We went from a fall a month, to a fall a week, to a fall a day or more. She's seen all the specialists, tried different walkers, had multiple rounds of physical therapy. She hasn't broken anything, but lately had some pretty bad cuts and her knees are pretty much shot. She CAN walk with a walker, and promises to, but a week later seems to "forget" her promise and starts falling again. I live nearby and I'm about to have a meeting with the administrators at her residence which I trust completely and who I know care very much about her. They are so worried about the constant falls, as am I (my mom, not so much).
What kind of options can I expect for her? Her problem is mostly cognitive. She just can't coordinate walking anymore, and needs an aid. But is otherwise pretty content on her own in her lovely 2 bedroom apartment. A move to assisted living would mean a studio and a loss of the community she has grown to love. I have 3 small children and have my hands full as it is handling all her medical and financial affairs, so I can't provide constant supervision. We are already paying $5k a month for her general residential expenses. I shudder to spend a ton more on a home aide just to supervise her walker use. She can still fall.
Anyone have any experience with this situation? Thanks so much!!
The following user gives a hug of support to Annieland: ninamarc (07-11-2012)
Annie, falls are typical with dementia and parkinson... and more typical with parkinson/dementia. It is a typical stage most go through before they become wheel chair bound. Even a well balanced adult will fall due to the parkinson. The use of a walker is great if she know how to use it and will remember to use it but as you see that is not what typically happens. They decide to get up, walk a ways, freeze up, and tumble over. It is part of the disease. You have been lucky so far that she has not been severly injured. Hip fractures, other fracture, and brain bleeds are typical outcomes. Once the falling starts it usually doesn't not stop unless there is a medical reason for the falls that can be treated and alleviated. Even an alert pendant does little good unless they can remember to use them and that is after the fact.
If it were my Mom, and I have been there with my Dad, I would move her to Assisted Living where she can be more closely monitored. Yes, there will be additional cost but that is for the health and safety of your Mom. Yes, she is going to lose the community she is in how, but with parkinson and dementia you knew she would eventually need additional care. The time has come. I will say that staying where she is with a full time aid will probably cost you more than moving her to Assisted Living
Yes, her memory is selective but it is not at her own determination what she does and does not remember at this stage. Some things just stick and some things do not. Her problems are mostly cognitive, and those are the worst kinds of problems to have. Otherwise health individuals who do not have full function of their mind everything lose everything. It can not be cut out, treated, patched up, or fixed. It only gets worse. I heard a great piece of advice not long ago (actually from a patient with EOAD)... "If the family is thinking about placement in a higher level of care, it is probably already time for that placement"... We as care givers tend to lag behind the needs of the cognitively impaired loved one.
See what the Administrator has to say, remember that you can not be there all the time, and make the best decision for Mom's health and safety
Hi Deb, thank you for such a thoughtful reply and I apologize for not responding sooner. At the meeting we decided on an in-home caregiver, hired for 2 hours in the AM and 2 hours in the PM for help and monitoring during "at risk" times. It was a last-ditch effort to keep her out of assisted living. She doesn't hallucinate, she is totally oriented to time, place and person, and has fairly good memory.
Anyway, after 1 fall WITH the caregiver and the walker, 1 fall an hour after the caregiver left (I just happened to catch that one by calling her before coming over and she crawled to the phone and I had her press her code alert button which she never does on her own), and 1 fall alone at night where she bruised her ribs and torso, she is now in the hospital.
So, you were right. I haven't had formal conferences yet, she was only admitted yesterday, but I don't see her returning to her apartment. I think the hospital is going to keep her for 3 days then transfer her to rehab at the nursing home for the 3 weeks medicare pays for (we did this same routine last year). After that, I think it's either going to be 24 hour in-home care at $500 a day (!!!), or assisted living, which would cost much less at this point.
It is such a helpless feeling, all the interventions, trying so hard to keep her upright and enjoying life and it is just impossible. I'm on my way to the hospital now. Thanks and hugs to all.
Annie, I do hope Mom will be ok. Sorry that I was right Yes we do try to put in place interventions and maintain what we feel is a good life style for as long as possible. Sometimes we lag behind. I have often said that it takes a major incident to open our eyes to the reality of the situation. We just keep hoping that it will be ok. I know I did, have, do, and will. Now it is time to move forward and not look back. You made the best decision, with the information you had, at the time. Now it is time to review that decision and go on to the next phase.
Watch out for her acting out in rehab (even in the hospital). Changes are dramatic... and a change in her living arrangement is a dramatic change. Hopefully the rehab is accustom to dealing with those who have memory loss. The fact that your Mom could not remember to use her panic necklace is indication that there is some memory loss there. They tend to be uncooperative with staff because they don't understand what they want and they also tend not to do as well with the rehab because they have the short term memory issues that hamper learning.
I do hope Mom will do well... and I do think a facility where she receives more one on one care is best for her.... and for you It will give you peace of mind.
Anne, think of this as just another step you must contend with, mom will be okay if you move her to the next level of care, she may even enjoy all the attention and she will be able to interact with others. She may act out a bit but make sure that she has things around her that makes her feel secure, her favorite comforter, some pictures that make her feel at home, try explaining to mom if you can that this is an adventure and may not be for long but until she is better, you have done all you can do, I am so glad your mom did not break anything which usually happens. keep upbeat and think of all the good things that can come from this..the next level of care will take a huge load of worry off your shoulders.
A lot is changing very quickly now and I wonder if the pace will speed up or slow down. My Aunt (mom's sister) will be flying in tomorrow from SC (I'm in MI) to help me move mom upstairs 1 floor to an assisted living apartment. We're lucky, it was available, and she got priority over 3 others on the waiting list. So now she gets the full spectrum of services as needed. The meds, the meals, the showers, etc. in addition to a whole new host of activities.
My mom has always been an "odd bird" as my Aunt says. She was 10 times more lucid in the hospital, and now in the nursing home. I had normal conversations with her, she didn't repeat herself, and responded quickly to what I said. She was also reasonable and happily accepted the plan to move up to the "floor where the crazies are." A week later I see her getting more back to normal but she's definitely not agitated or unpleasant. It's like the fewer distractions there are, the more normal she acts. She's a shopaholic and compulsively organizes her things so her place is always immaculate, but it's gotten distracting and confusing for her I think to continue these behaviors. It's also led to many of the recent falls, of course. AND it makes my job of downsizing her for what feels like the tenth time SO much more FUN!!! :-P
Anyway, she's in a wheelchair now. I don't know if this is permanent or what. She's hooked up to all these alarms that go off if she tries to move. And a mat on the floor and bed that goes off if she's in bed and tries to get up. Oh, she was also diagnosed with Dysphagia and persistent silent aspiration while in the hospital. She had a swallow study done that I had previously scheduled because I was concerned with her gurgling and choking. So her diet is modified now and she's enjoying it. She's never had pneumonia, but that is a distinct risk for the future.
I'm trying REALLY hard to get through the next week without flipping out. Mom is VERY particular about her "stuff" and I am kicking myself for letting her shop for the past 2 years that I've been in charge. All that we downsized is back again, and even though I was always on her about it, and cancelled orders where I could, she still spent $25k on new clothes, shoes, books, craft supplies, and all sorts of crap. AND she wants to pick through it all. It's gonna get ugly, I know it. She INSISTS she needs SO many things that I know she doesn't, but it's so hard to argue with her about it! She doesn't forget anything and will ask me a week later where something is that she had. I'm not good at constantly coming up with stories. It's actually rare that I can even come up with one good story when it is called for. I just buckle after a while and let her do what she wants (i.e., how she spent another $25k even while I thought I was stopping it). I told her (and myself, really) that I'll make a deal. She can take whatever she wants as long as it fits (and isn't dangerous, of course) but she can't buy any more stuff. She has EVERYTHING anyone could possibly need. I'm going to take the last of the credit cards away for real now.
Anyway, I'm rambling. I'm going to try to participate here more often. I can tell what a good group this is, as I've been looking for a good online community for this sort of thing for years and haven't found anything I liked. I'm 36, with an 8, 5 and 2 year old. I have no siblings and my father died 15 years ago. All I have is my Aunt, who is 5 years younger than my mom but is in MUCH better health. She gave up her best years to be a martyr home caregiver to my grandma who lived to 99. She deserves her retirement so I only call on her at times like these, and she is happy to oblige. So tomorrow it begins! I gotta remember my emergency Klonopin...
P.S. I know it doesn't matter, but it drives me nuts that they can't pinpoint the exact type of dementia my mother has. So many symptoms of Lewy... but why no hallucinations??
Bless you Annie Take a deep breath!! Know that you have done the best you can with the situation you were given at the time. Now you move forward and do something different for a while. It is good that your Mom is going to move. I am very aware of the alarms and safeguards because Mom has the same. They are helpful because they alert the staff to her trying to stand up. With a good response time they can prevent many many falls.
...."It's like the fewer distractions there are, the more normal she acts."... This is typical of dementia. The brain is damaged and it has a difficult time keeping up when too much is going on. Multitasking that we take for granted is so very difficult for them. A one on one conversation goes well but a conversation in a group is a disaster. A nice quiet meal in a smaller dining room goes well but a meal in a huge noisy dining room turns bad quickly. Along that same line, if you can downsize her dramatically, she will deal with it better. Mom had enough clothes for 3 people when she was in AL. I just keep taking clothes home to wash and never taking them back. At this point there are 9 outfits in her closet. Laundry is done once a week and that gives her 2 outfits for accidents. She ask about her "stuff" for a while. I would tell her that we would look for it later but let's do ....... (whatever) first. It usually worked though I had to repeat the conversation often.
Mom also went on one of those spending sprees but it was to update the house... and I wish it was just $25K!! I came home to new drop down windows (the house has 23 windows) and new to of the line kitchen counter tops!! I, as you, did the best I could to curb the spending but they have a will and a way. Just know that what is gone is gone and you can't fret over it. You have control of where she goes now. To satisfy Mom's habit I did bring her new inexpensive bobbles from time to time... or revamp an old outfit with some new addition. A little lace sown here or a few new buttons became my friend.
Hang in there. The move will be good for you both and you will find your new normal. Your Mom may take a while to adjust but she will. Downsize dramatically but leave her enough to piddle with....and promise to look for the missing items later I do hope it all goes well and glad you have your Aunt to help you.
Glad you found us and look forward to hearing more from you..