My sister moved into IL in December. She agreed she was no longer safe at home. Now she won’t leave her room! Should I be concerned?
She really would have preferred to stay at home, but repeated trips to the ER after falls finally convinced her. But she hasn’t left her room since she moved in. Says the planned activities aren’t interesting. Hasn’t gone to the dining room, has all her meals delivered to her room. She sleeps most of the time. She had mobility issues before the move (pain walking, used cane, walker or scooter) but it is getting much worse and now she can barely make it to the door and she is in a studio. She has med manager telling her she needs to walk, as well as her doctor and family. It’s like she has given up and is just waiting to die. She has mild dementia with hallucinations and delusions. Not bad enough for memory care, but we are now trying to figure out if she should be in AL. Cost of care would basically double. So far I have been paying majority of her expenses until her house sells, (closing is the end of this month) at which point I will be reimbursed. But with the added cost of AL, her assets will only last her about 2 1/2 years. And she makes too much for Medicaid. Not really sure what you can tell me. Just concerned about her lack of will to survive. And she is on antidepressants.
It wasn’t until THIS month, that she came out of her room for something besides meals. She has also quit sleeping all day. She is now out in the activity room doing puzzles, and bingo, for goodness’s sake. Both are activities that she would NEVER have done in her previous life!
What seems to have made a difference, is attention by a geriatric psychiatrist. They switched her anxiety and depression meds. It’s been a miracle!
Best wishes to you.
If the current med regimin isn't working, then another needs to be tried.
Has the IL facility curtailed a lot of the activities?
It is very possible that she does have some depression.
Since she is in IL can she come and go? If so would it be possible to set up a "date" with her take her to lunch once a week. It would give he something to look forward to.
I can see where it might be difficult to meet people and get to know them when everyone is wearing a mask and you can not "read" facial expressions.
I would next time she has a doctor's appointment mention the isolation and see if she can be reevaluated for the depression, it is possible that a medication adjustment is necessary. With the diagnosis of "mild" dementia it is possible that with the move, the isolation that her dementia has caused a decline.
My mom lives with my YB but she has gotten very depressed over the past year and at first, wasn't ALLOWED out of the house, now she is and the whole thought of just walking outside is beyond her scope of capability.
She can barely walk, not that she did a lot before, but I don't think she takes 500 steps in a day.
She is grateful she was 'safe' during covid, but it scared her so much. All doom and gloom, all the time.
If she'd agree to a psych eval, I think, even at 90, she'd do well on an antidepressant and some talk therapy. She's still so angry at people who have passed on or are still here, but whom she can't stand--a lot of VERY pent up anger that I'd like to see her release---
And yes, her mild dementia has gotten noticeably worse.
Sure sounds like depression with constant sleeping, no socializing and waiting to die. Is she on anything for depression?
Contact the facility to clarify, the doctor with your concerns. I'd push for thorough evaluation. Check for a physiatrist or geriatric neuropsychiatrist. She may even be ready for palliative care to help with symptom control and emotional support.
Best of luck on this difficult journey.
You may want to see an eldercare attorney for estate planning and get her Medicaid-ready. I presume you are her POA? If not she needs one. The way she is headed you can practically count on her becoming bed bound.
Now I kept my mom going and we went to the park and walked a quarter of a mile for five years DAILY until she forgot how to stand so she was only bed bound for 2-1/2 months and died age 90 due to the complications of insulin-dependent diabetes and kidney and liver failure due to 10 years type 3 kidney disease--another result of diabetes. She died with perfect skin--not a single wound. I got a feeding tube in mom because I did not want her dying of dehydration--and that feeding tube took TONS of care but I never had a problem with it. Mom was very comfortable as she literally forgot how to chew and swallow food. Mom was the center of my life for MANY years so when she died it left me a basket case and now I'm working and trying to get my grad degree. Mom is in a much better place and safe for eternity. I miss her everyday but we all die and Alzheimer's did not kill mom--God did it with her diabetes, liver and kidney disease. Still I think her living to be 90 with insulin-dependent diabetes I took good care of her. So I have no reason to feel guilty over nothing.
I took care of mom by myself.
Even if one only anticipates having funding for 2 1/2 years, it still makes sense to retain control of one's assets--for one thing, there's always the chance the LO might not live that long.
If it is obvious a person's financial situation only allows sufficient funding for at most a few months (or is inadequate even for that), then it might might more sense for the facility to have access to assets--perhaps it would facilitate the application for Medicaid. If the resident becomes incompetent and there is no one who was available to have been designated a POA, then this might be another reason to do so.
In any case, each person's situation is different and the options must be considered carefully--if necessary, obtaining advice from professionals who aren't associated with the facility (to avoid dealing with someone having a conflict of interests). It must be remembered that a facility is a business having its own financial interests in mind rather than that of the residents.
I raised aquarium fish since a small child and they require more care than imaginable. (and studied fish Ichthyology - diseases, in college).
Betta's appear to "get by" as they can breathe air from the top surface if the water is foul, which it easily can be. Filters need changing (and a two-gallon means most often the "flow" from the filter is too fast for these fish). I kept mine in huge heavily planted aquariums, with schools of catfish. (even in a 70 gallon with other appropriate fish). (dampered the water flow from over the back filters)
The get fungus, little tears in their fins which turn into fin rot, and other diseases which are hard to spot at the beginning, when they can be better treated, for the untrained. (and harder to heal). They feel pain esp the mouth and death to them is painful as well.
"""""""""""https://pethelpful.com/fish-aquariums/diseases-of-a-Betta-fish""""""""""""
Plants yes indeed!
You don't give us an age. I know that my brother, not overly social, did have a bit of adjustment in ALF where he had two rooms. He gradually did get out and socialize a bit more, and take part in things. There may be some adjustment.
And again, you could be correct. She may have lost interest in living a life that consists after one loss after another. This is normal for some people. They honestly tire of it all, and would prefer it were over. It isn't an unreasonable option. You say that she is on antidepressants. Do let the doc know that this particular medication doesn't seem to work for her. There are other options. But eventually you yourself may have to accept that this is where she is at now, and that things may not change a lot. I am so sorry, and wish you the best.
Could she go back to her home with in home care? Would she be happier there? What's the cost difference?
Second thought
If staying where she is, could she have Physical therapy? This would provide having her get out of her room and some socialization.
Third thought
Can you come to join her for meals? I know it might not be allowed, due to covid. When my Mom was in nursing home rehabilitation, she would not want to go to the dining room. I would take her to "find friends " and conversation. When I was not there, staff would take her.
Earlier in life Mom was VERY social, active and outgoing. A change in her health changed that.
Mom also did not attend any activities. Frankly, I didn't find them stimulating, either. My Mom's mind is still good. If your sister's mind is still good too, the activities may not be suitable for her either.
It sounds like your sister is depressed. I hope that she is able to cope better. Now that it is Spring, being able to get out may help her.
Best wishes to you both.
I experienced this problem over and over for the nearly 20 years I worked as a nurse supervisor in both AL and memory care. Does her facility have an "ambassador" program? This is someone on campus who can spend time with her (encourage her to participate in meals and activities) until hired help can be found. Finding our reason(s) for remaining motivated when we get into our senior years is perhaps the hardest thing any of us will ever do. With age we will all require a different level of "attention" and your sister is tipping the scale in this area. While my prayer is for her to have longevity, my greater concern is for her to enjoy what time she has remaining. It's all about quality, not quantity. During my career, I performed my own personal assesssment for each admission which concentrated on 5 hallmark areas. Nutrition, Hydration, Exercise, Rest and Stress Management. Under stress management is found pain/discomfort. My greatest concern is for your sister to be pain free. She will never move on (and will only digress further) until she is physically able to do so. Opioids may address her pain but have awful side affects--mostly constipation! Tramadol (Ultram) is better but can make her a bit loopey. Certain individuals can balance their depression through exercise but with your sister, she can hardly move so we have to start with baby steps. My recommendation is for her to try CBD oil, a warm soak in a bath with essential oils followed by a gentle foot massage twice a week--to start. Spending quality time with her is what she needs most at this point in time. Cannabis perscribing physicians can be found online and will be able to recommend optimal dosages. Use some of her resources from the sale of the house to hire a caregiver. Not just any caregiver but the right fit for you and her. This is where you'll really have to do your homework; by interviewing for the right person. Someone who she can truly relate to. It will be a lot of work but when you land the right person, it will be well worth it! This caregiver will be someone your sister will REALLY enjoy spending time with, talking to and laughing with. For my seniors who had no remaining friends or family, I always used Reader's Digests' mantra "laughter is the best medicine." Not just reading jokes to them but utilizing other resources like You Tube. Look for Art Linkletters "kids say the darndest things" and Hollywood Squares with Paul Lynn and countless animal videos. For the moment--as long as she's laughing---nothing else will matter and she will begin to regain her quality of life.
I feel your sister stands a good chance of remaining in IL as long as she recieves the attention she needs which will result in her willingness to thrive.
I wish you well and will keep you both in my prayers.
My Best,
Ken
She may not really be 'independent' living. Sounds like she needs more care than that. I would ask if IL or AL would send a person to her room to take her to physical therapy sessions. You may also be able to get her doctor to order home-health people who would send therapists to her via Medicare payment. And, perhaps weekly nursing visits. Sounds like she needs to be engaged rather than waiting on her to engage herself. If you can get in to the facility, find out if you could order a meal and eat with her in the dining area. Sometimes people don't feel comfortable going alone into a group. A more extroverted person might be able to get her over the hump
It's a sticky wicket, in reality, Memory Care.............because those who are lucid enough to realize some of the other residents AREN'T, are generally unhappy (like my 94 y/o mother). She's quite out of it, actually, yet is in deep denial that she has dementia. So............she will tell you and anyone else who will listen that she does NOT belong in 'the crazy house' with the 'stupid idiots' who live there. Sad but true. THIS is the reality of moving a loved one into Memory Care: will they TOLERATE it? Now, in spite of the fact that my mother has the hideous attitude that she does, she DOES tolerate Memory Care. She eats with the other residents and does the activities, etc. She just complains 24/7, that's her nature. There are quite a few residents who have milder dementia who reside in her place, by the way, she just chooses to associate herself with the more advanced cases and then complain. A person does not have to be 'very bad' in order to go into a Memory Care ALF, either............you will find all levels of dementia & ALZ in Memory Care. Some sleep in chairs all day, some power walk laps around the perimeter all day............it varies.
So my suggestion to you is to find an ALF that has a Memory Care as part of the services. Speak to the intake coordinator and see what THAT person has to tell you once they do an evaluation of your sister. 2.5 years is quite a while to be living in managed care. Speak to an elder care attorney in the meantime and see what s/he tells you about Medicaid and how your sister can qualify for benefits; some states have Miller trusts for those who make too much to qualify, and that's the go-around to get benefits. Only an EC lawyer will be able to give you the 411 on all of it.
Just know that your sister is too advanced for IL right now and is struggling; don't let cost be a barrier to placing her where she will do best. Again 2.5 years of private pay is still quite a long time.
Wishing you the best of luck with a difficult decision
It's no good telling her she needs to take up her bed and walk, a way has to be found to make it worth her while. What are the underlying issues?
Being on antidepressants can make you feel like that plus can make you suicidal.
Speak with her Dr about it.
Go visit her often especially the first month while she's getting use to her new place.
Yes an AL will eat up her funds more quickly but some facilities have a policy whereby they will fund the continued stay of a resident who has been a private pay for 2-3 years. Hopefully she is currently in that type of facility already. Be aware that most AL facilities Medicaid beds are extremely limited. Time to sit down with the facility Administrator and find out how it all works; if they do fund residents who have run out of funds, please make sure you have that statement in your contract with them.
It's a difficult situation for all involved. Hugs and prayers to you.
(BTW, we always wanted her to be in our home, but mother wanted to remain as independent as possible and preferred her own space) I well know that not everybody can bring their LO home - and that is understandable - but in our case, my high hopes for mother - and the reason she was placed in AL to begin with - for fun activities, and close supervision - were both, at the (very expensive) AL facility were not honored . I miss her every, single day.
Perhaps at 92 with medical issues it was time for your mother. I am not saying she should have died but 92 is not young. The activities may have been affected by Covid. I do know that the facility where my mother is has tried very hard to keep Covid away. If a worker tested positive they were sent home for 2 weeks.
My grandpa was doing the same..given up..not helping himself...despite my every effort.
I remembered that he loves to swim in the local pool in the summer...some of the ladies bring him treats etc...Makes him feel young again im guessing
. I reminded him about the pool opening in the summer again...He hasn't pulled out of his funk altogether. However, he has pulled out of it for at least 3, sometimes 4days of the week.
Your sister (like everyone) has to have a. something to do b something to look forward to c someone to love.
Remember the interests she had a passion for..and see if there's a way to make that happen for her
Sounds from your message that you really love your sister.
You might tell her you love her & need her to help you with some concern or problem. Feeling needed is a motivation to be here
So many elderly wait in drug addled isolation for the body to expire so they can go through the doorway we call death. noone to care for them or about them
You sister is very lucky to have you watching over her