Mom has been staying with me since September. She is 89 and has been diagnosed with mild mixed dementia, vascular and Alzheimer's. Her confusion and ability to live alone declined over this past year, her house in my hometown is 200 miles away. Her longtime friends and neighbors are what enabled her to live on her own up to that point. She was even driving, small town, but still we worried.
I gave a heads up to her PCP, and they did memory test at her yearly physical and she did poorly. She ended up hospitalized for low iron and blood count, probably due to poor eating. She doesn't cook anymore and mainly snacked on stuff she didn't have to cook. Used the hospital stay as an excuse for her to stay with me for awhile to recover. Her blood count has stabilized and gone up since I've been cooking or her, and also taken over her medications.
Referred to Neurologist. Had Brain MRI. Got diagnosis.
She's in denial about it. And is spitting mad they told her to stop driving. Neuro gave her a referral to do a driving evaluation to placate her, but there's no way she will pass it. She gets confused about a lot of things, has difficulty with the correct word. My cats are being called dogs. But the fact that she is not supposed to drive, that she doesnt forget at all
I have a small house, and am going a little crazy. My sister tries to help, but is not in same town and is working full time with young kids, and no spare room. I'm retired, and have the room,but it's difficult. She has no hobbies, doesn't read novels, knit, sew, play cards. I take her with me when I do stuff with my grandkids but otherwise shes sitting around watching TV, and talking to me... chatters about every stray thought.
I'm an introvert, like to read, work on my genealogy projects, go for walks. Tells me to go ahead and do my normal stuff, but I can't because she interrupts constantly. And when I stop and give up on it. She gets mad and says fine, I'll just sit here then.
I've taken over her bill paying because there were bills missed and late. She cant seem to complete it. Gets overwhelmed and puts it away for "later or tomorrow when I'm not so tired. I have medical and durable POA
So here's my problem. We have the "you can't live alone anymore" discussion. She says it would be a " nightmare to live in an apartment, and those places are awful. I don't want to stay here and be a burden. "Get her to agree to "go look" so we know what's available. But the next day it just starts over. There is no way to complete the task! It would take at least a few weeks to discuss the issues, tour a few places, maybe convince her to pick one, sign a lease and move her in. But after a few days many of the details are lost or mixed up. So we are in an endless loop going nowhere. We actually drove to a new assisted living place to look, and she sent me in for a brochure ; wouldn't get out of car.
Could do caregivers in her home, but I am a 4 hr drive away, and I am afraid that she wouldn't remember them from day to day, probably wouldn't let them in or go to sleep with a stranger in the house . So assisted living near me is the best safest solution. She needs someone to give her her medications every day, someone to remind her to eat a regular meal, and some social interactions. She is fine to walk around, bathe and dress herself. Loves to people watch, and watch game shows on TV. Gets a little tired if she has to walk a lot. She gets a little off balance on occasion, so I think a fall monitor would be good
What do I do? Choose a place, and tell her this is where you are going? She is strong willed and has always been very independent, so I don't think she's would just say ok. She is in denial about how much confusion she exhibits and the mistakes she makes. Mostly I just go with it, but sometimes I have to correct her, and she says I'm wrong or I changed the plan. And then there are times when she is talking and acting like her old self.
Im going to set up a tour after the new year at a couple of places near me. We will see how it goes.
Im more worried that I need to take her to hometown to complete some dental work at her longtime dentist. Hopefully she wont balk about coming back home with me
Find three places, two good and one bad. Take her to each and let her make the decision herself. We told her she needed the care, but not how long and not why. Going was not a question I debated with her, but I did debate the pluses and minuses of each.
Redirection is something I learned a little late in care giving.
"She has good long term care insurance, plus an income from a pension. I'm goin to look this weekend. It's just going to be messy.and emotional."
Awesome she has LTC insurance (we don't, but mom/dad were good savers and setting up a trust with proceeds from the sale of her condo added in, she'll be covered for yrs! It is 3 years now - she is 96.) Pension is good to have, hopefully your POAs can help manage these. I commented about SS. They don't accept POAs, you have to apply to be rep payee. I called my local office, not hers, and easily applied and got accepted. They didn't look at one piece of paper I brought in. Although taking over the bank accts can work to a degree, we needed the address changed to ensure we get tax/other documents. SS specifically states using their funds w/out rep payee is NOT acceptable. This applies to ANY federal entity (mom's was dad's federal pension - I had to leap hurdles to get that done! It was worse than doing the SS!) Pension address needs updating so you get her info.
"Yes, she keeps talking about "those places". Can I ask how you arranged to have her moved to the facility? While I have durable and medical POA, wouldnt she still need to sign something?"
Yup, "those places." As I noted before, her plans, before dementia, included moving to AL. At the time she needed it, she made noises of disgust. When I mentioned they have better food, she asked how do I know (she used to go to the free tours/lunches all the time and raved about the food!) My reply was ANYTHING was better than the crap she was eating. Disgust extended to Meals on Wheels too, despite coming from the Senior Center, where she used to go with bells on with others, esp when free/low cost!!! You can't reason with dementia and can barely understand it sometimes!
Sign EVERYTHING as DPOA - this is what it is for!
In mom's case, couldn't move furniture beforehand, so I bought items for her - not her taste, but the choices weren't great. I left mom's move to my brothers, expecting to get the blame anyway, like with the car. Somehow she knows better than to ask me! Thankful for small miracles! The fake letter is what pushed mom. You could try getting one from her doctor(s) stating she needs it, at least "for a while", to help with whatever is bothering her the most - then the "blame" goes to the doc, not you. You can use that over and over - doc says you need to do X or Y in order to "go home." For some this doesn't work (they say the doctors don't know what they're talking about!), but if it's worded well, she might consider a place you choose vs one the state chooses (maintain the whole time that YOU have no say in this!) If not, resort to help for moving things and get her out first, then go there for a meal is about all you can do. A little anti-anxiety beforehand might help (get this started before the actual move, so you can see if the results are good.)
Going forward, inform yourself and learn the "tricks", which can require little white lies/fibs. We are NOT lying to hurt our LO, but rather to protect them. Some demand honesty, but what good is that when you have to repeat it and hurt them each time? The fibs/lies are to divert the issue and assuage them, leaving some hope in place (we know this is it - they don't need to know and it DOESN'T hurt to give them hope.) Many demand to get out/go home, pack up/announce they're going home, cry, whine, accuse, etc, and there's nothing any of us can do other than to understand this is what happens and learn to let the guilt go. You are doing what you feel is BEST for your LO!!!
Perhaps the ones you looked at were less than desirable, but of the 3 MC we checked, only one was not what I would choose. The "shared" area was too busy/crowded with furniture and it was located on the 2nd floor - I had serious concerns about that in the event of emergency. Many residents also needed walkers/wheelchairs, so how would they get them all out in the case of a fire (no using elevator)? The other 2 were very nice, one recently built, the other recently rebuilt. The deciding factors for me was price and location. I knew that I would be the primary contact (YB still working for many years to come and OB not local). The other place was 40+ min away, where this one is more like 10 min. The price difference was considerable (we are only next year exceeding what the other place wanted for a "shared" space, aka 2 BRs sharing a bath, with a lovely view of the parking lot and 4 lane busy road! Mom's space is a private BR/bath with a lovely view of a garden.)
Mom has been there 3 years now and it is STILL a nice place and despite turnover in staff, I haven't had any issues with any of them. Still bright, clean, well-cared for residents - I give them kudos all the time for what they do. I can't even imagine trying to do what they do for a day for 1 person never mind multiple people, all at different stages and abilities!!!
So, unless you have toured/experienced many more than you have likely checked, posting comments like this is not helpful. The "bad" may just be something YOU don't like, but labeling most as bad is irresponsible.
Recommending one make a check list, visit many places, ask many questions, take notes, chat with staff and residents, visit several times at different times of the day, etc would be HELPFUL suggestions. Compare notes on them and pare it down to a few or one choice from there.
See how easy it is to make a POSITIVE comment?
We wish you the best. Be sure to let the forum know how things are progressing.
Since mom has difficulty remembering conversations - create a simple contract with her that outlines that she can no longer drive AND needs to live somewhere that kind people can oversee her care 24/7. Post a copy on the refrigerator and keep one in your "mom files". Then, decide on a "move date" so you won't prolong the process of finding and moving mom in to her new home. Post that on the refrigerator too.
Visit enough places to narrow your choices to 2-3 places. Visit those "finalists" with mom. Ask her to "rate" different aspects of the facility with a checklist (you'll need to create this). After she "judges", celebrate selecting the "winner."
"So here's my problem. We have the "you can't live alone anymore" discussion."
Yup. Although her plan included moving to AL if/when she felt it was needed, just the mention of AL would bring words and facial expressions of disgust. NO interest. Brothers offered to take her in (would have been a huge mistake!) but she said no.
"Get her to agree to "go look" so we know what's available. But the next day it just starts over. There is no way to complete the task!"
This isn't going to work for several reasons. 1) in her mind she doesn't need it and 2) any discussions are like dust in the wind. She will forget the "talk", in minutes, hours or the next day, but it WILL be forgotten. You will drive yourself nuts trying to have the discussions and/or trying to get her to agree.
It would be best for you to tour a few places, make notes, ask questions, find the place that would best suit her and her finances. If needed, consult with EC attorney to discuss details. Ours told me that we couldn't force her to move (we have POAs, etc done years before) and suggested guardianship, but the place we chose doesn't do committals. Don't go that route if you can avoid it! We had to come up with a ruse to get the move done. Getting cellulitis just before the move gave YB an idea for a fake letter, which he used to convince her that she either moves where we choose or social services would move her.
"So assisted living near me is the best safest solution. She needs someone to give her her medications every day, someone to remind her to eat a regular meal, and some social interactions. She is fine to walk around, bathe and dress herself. Loves to people watch, and watch game shows on TV. Gets a little tired if she has to walk a lot. She gets a little off balance on occasion, so I think a fall monitor would be good"
When choosing a place, it would be best to find MC/AL. She doesn't sound like AL would be the best choice and those with dementia take moving hard - so if she had to move to AL then MC, it would not be good!
"What do I do? Choose a place, and tell her this is where you are going?"
If possible, choose a place for her, but avoid the "tell." If you have friends/family who can help, arrange to have them move her furniture, clothes, etc, or hire movers with someone to "manage" them, while you take her out to shop, visit the grandkids, etc and then go to the place for lunch or dinner (most will offer a free meal.) When done, walk her with staff to the MC area just to "look around" and let them occupy her while you exit. It won't be easy or pleasant, but it can be done. The staff told us to get her there, they would do the rest. They did order Lorazepam to counteract any anxiety/anger issues, but only for the short term. They also suggest we don't visit for at least a few weeks, to allow some adjustment.
"She is strong willed and has always been very independent, so I don't think she's would just say ok. She is in denial about how much confusion she exhibits and the mistakes she makes."
Yup. I'm fine, independent, can cook and take care of myself. I am old so I am allowed to forget a few things now and then!
"Mostly I just go with it, but sometimes I have to correct her, and she says I'm wrong or I changed the plan."
Best to stick with the "go with it" as it is fruitless to correct, argue with or try to convince them otherwise. This is their reality and for the most part we have to learn to live in it with them.
"And then there are times when she is talking and acting like her old self."
Yup, it is so odd what IS remembered and what is forgotten.
Find a place. Enlist help. Make a plan to get her there, enlisting the help of staff at the place. Skip the discussions.
"Her longtime friends and neighbors are what enabled her to live on her own up to that point. She was even driving... but still we worried."
Yup. One neighbor was esp helpful. Mom was in a 55+ condo area. When YB had the "talk" with her about the car, she looked like a 5 yo caught with the cookie jar! I only stood in the background. On the way out I asked him to disable the car as I was sure she had another key. Next day, I get the nasty call about her key, but was able to say I never touched it. The second day was a nastier call to come fix whatever I did to her car! Clearly she found that key. Again I could say I didn't touch it and am not a mechanic, so I have no idea what's wrong with it! My nose didn't grow! ;-)
Her PCP at the time agreed to write the letter I needed for her federal pension, but after 9 months of asking and pleading, nothing ever happened. I had to change docs anyway, as the place we planned for the move was not near the one she had. That doc wrote letters and I also applied for SS Rep Payee (the only legit way to manage SS money. Couldn't change her address to get documents, so this HAD to be done.)
"She doesn't cook anymore and mainly snacked on stuff she didn't have to cook."
Yup. I was helping before and after the car went away and realized she was resorting to frozen dinners and boxed crap, not cooking. We put in a timed locked dispenser for meds, and hired a 1 hr check/med check for her, to keep her in her place. The plan was to increase time as needed. At the time she didn't need help with other ADLs. That lasted 2 months or less and she refused to let them in.
"She's in denial about it. And is spitting mad they told her to stop driving."
Yup. In their mind they are fine. Their self-image is based on before dementia and nothing will convince them otherwise. She whined and complained about the car for quite some time! Eventually that changed to "giving up her wheels" was the worst thing SHE did, like it was her idea!
"She gets confused about a lot of things, has difficulty with the correct word."
Yup. Not too much at that time, but there were a few - likely would have been more if we lived together.
"I'm retired, and have the room,but it's difficult. She has no hobbies, doesn't read novels, knit, sew, play cards."
Yup - except I couldn't move into her place and no way could she move in with me. She used to have "hobbies" before dementia, one of which was bargain shopping but even that stopped (not before she collected a ton of clothes, shoes, handbags, etc, which was discovered after we moved her. AUGH!)
"I've taken over her bill paying because there were bills missed and late. She cant seem to complete it. Gets overwhelmed and puts it away for "later or tomorrow when I'm not so tired. I have medical and durable POA"
Yup. I noticed some issues with bill paying, so I took over. Found a lot more after doing so! Thankfully she was current with bills, but not without mistakes!
I could probably find many more similarities between your mother and mine!! Like repetition (statements and questions), putting things away and asking for more (forgot where it was or that she had it) or accusing others of "stealing" items...
Do NOT let her guilt you into changing your mind and taking her home. Often they will, when you visit, complain about everything, but if you can sneak in and observe without being seen, oftentimes people find their LO actually enjoying the place/people/staff! I was lucky, she focused the "take me home shtick" on YB when he was there, not me!
BTW, for you and others, POAs don't really give you the "authority" to make this move happen (nor does it work for SS.) Having backup in writing from a doctor(s) and medical info can facilitate, but for the most part you will have to "wing it" to make this move happen. If I can provide any more details/help, let me know!
she fell out of bed the first week and was taken by ambulance to ER where she had an MRI of her brain that was compared to a previous MRI and showed significant deterioration. There was also lung and heart function deterioration. Before leaving the ER I received a call from her PCP nurse saying the doctor thought it was time she was admitted to Hospice. She was evaluated when she returned to ALF. I was told I should start preparing for her end of life soon because her symptoms and behaviors indicated it could only be weeks. Six weeks later she appears to have improved in some ways but is totally dependent on someone to help her eat and bathe. She has a hospital bed and fall mats in case she falls out of bed again. She is definitely in the best place for her but she made me feel guilty for not letting her live with me. She says things like I don’t want her, I’ve thrown her away, etc. I wish I could take better care of her but I can’t. She doesn’t realize how demanding she is and how much care she requires.
She can’t feed herself so I feed her lunch and dinner and the morning CNA feeds her breakfast. She can’t walk and is very weak so she stays in bed all the time and sleeps most of the time but still tries to get out. She is i continent so wears disposable underwear. She needs help showering and getting dressed.
I find it very helpful to read what others have gone through that are similar or even the same as I am and what suggestions have worked. I hope that you find a solution and validation that what you decide is the best thing for your situation. Best of luck to you!
The facility has some residents that help get new residents settled and introduce them to other residents and activities. It gives the ones that helps something to do and feel helpful.
perhaps ask if there are residents that would be a new friend
We were told to basically look at assisted living communities first and only take her back to look at 2. My grandma only needs a low level of assistance though. The place we plan on taking her to look at is a low level of assisted living and independent living.
Good luck!
Best wishes to you and your mom.
Did she willingly get in the car, and walk in? I can see my mom just refusing all of it.
Park in a place that is not the front door of the facility, check out if they have multiple entrances and use the one that doesn't have a sign. Go enjoy a meal together and then you and sister make a bathroom run and let the facility take over.
She is going to have a fit and you guys are going to catch it, but she needs 24/7 care, whether she knows it or agrees or not. It is extremely difficult to place someone that doesn't know they are having trouble. You have to remember that you are the adult now and you have to do what you can to ensure that she is as safe as possible. Happiness is not part of that. She will adjust if she likes to people watch and socialize, this is one of the benefits of a facility.
I would be sure and talk with her doctor about prescribing something that will help calm her down for a day or two, change is hard on dementia patients and the facility knows this, so they expect some rough behavior for a few weeks, that is why they say stay away and let us deal with it. I didn't do that, I thought it was cruel and wrong and I was never let off the hook, my dad would ask me for things that the facility would do. It just made things harder, like not asking them for water, he would go thirsty until I got there. They really do need to learn to navigate their new home and figure out who to ask for help.
Another thing was that I was always told how awful everything was and when I would ask the aides they would say it was wonderful and he was doing great, so I stood back and watched him when he did not know I was there. He was doing better than he led me to believe, everything was not completely wonderful but, it was definitely better than awful, by a long shot. He was trying to manipulate me and keep me torn up while he was actually enjoying a pretty nice and happy life. So be prepared for the hustle of guilt and shame and anything else that she will use to get what she thinks she wants. Don't buy into all of it, watch and see for yourself.
I would bake or make homemade goodies that my dad could share, then we would visit in the public areas and I would greet other residents and offer treats, then introduce my dad, this helped break the ice and gave him people that now had a shared happy experience and a name, made it easier for him to get to know people. Then they could all say hi to one another or do meals and activities and not be total strangers. I also did activities with him so that he could get engaged without any fear of being the new guy. I found that it is a lot like a shy kindergartener, they just need us to have their backs for a bit.
Best of luck finding a place that feels like a good fit and here's some strength to do this. I bawled like a baby having to place my dad, but I couldn't do it and he needed more than I could honestly provide. His health improved tremendously with the proper care and I believe the stimulation of peers to interact with. Hugs for all you have done.
Same with Daycare, someone needs to get her up and ready. My Mom had a bus pick her up. She at first didn't like it and wanted me to take her. It was 36 miles a day if I took her. Told her no, that she needed to take the bus. The time I would have spent taking her, I got a shower and then DH and I would do something.
You go look at the ALs. You pick one you like. You are wasting time waiting for her to agree. It may never happen. She no longer can be reasoned with. She does not realize her limitations. Yes, she will be mad but now is the time. If you wait too long, its going to be harder for her to adjust. When you have made the decision, you ask one of her neighbors to invite her for a visit. Then you move what she will need to live in the AL. You take nothing valuable. Take only the clothes she will need. I did it by seasons putting the clothes not needed in under the bed boxes. My Mom played with her clothes putting clean ones in the wash, putting dirty ones back in the closet. Under the bed boxes she didn't realize were there. One coat, a couple of pairs of shoes.
Don't wait. Decline can be gradual it can happen overnight.
I have and the the doctor also suggested an adult day program, something called Menory connections. But that was met with a resounding no. Her neighbors and friends are the ones that alerted me and my sister to her more recent difficulty, there have been phone calls in the middle of night to them, with confusion that she didn't know where she was when she was really at home. Evenings are much worse. She is forgetting how to do things she use to do no problem. For example she used to warm leftovers or frozen dinner in microwave, but her old microwave stopped working, and she cant remember how to use new one. She is very concerned, paranoid even, about fire. Ant blinking light, or strange noise and she asks do you think it's going to catch fire? She was Turing off TV early in the evening because she was afraid that she couldn't get the TV off before bed. She unplug everything before bed, because of fire fear. Which causes problems with some electronics resetting when she tries to use again.
She use to use her cell phone, but even that now confuses her. She gets a text from a friend, but doesnt remember how to answer it. Then she she a 1 next to her email con, and cant remember what that means ams worries ...fire hazard. The word confusion causes communication problem. I spent 30 minutes helping her look or her cell phone, only for her to say "found it" and hold up her house keys.
Sometimes she wakes up completely disoriented, at night or when she dozes off In the middle of day. Once she got up to use bathroom in middle of night at my house, but there were "strange men in hallway" she was scared to leave room and ended up peeing in the bedroom floor because she waited for them to leave. I was just sleeping across hall!.
She wakes me up several times a week, talking about people and things that aren't there.
I made a quick run to a grocery store, was gone less than 30 minutes, but when I got back, she was totally scared, because of a crawl message at bottom of TV screen.
Onice the driving eval and holidays are over,we are goinn to have to do something
Bottomline: Don't wonder if you should... just find a facility you like with a private room. Ask the facility ppl to come visit mom at her home, they will help determine the best setting for her. Decorate it like her place, take her there for lunch and then to her new "resort apartment". Call it rehab, or a hotel, or a little stay... whatever quiets her down and then let the extra attention of staff and residents distract her.
Just keep saying "mom you took care of me as a child and now I am taking care of you. This is the safest, most fun place for you to be. With help and ppl doing everything for you like a hotel! Friends activities, yummy foods."
You will feel sad for a bit, but from my exact experience as yours, I can say it was the best thing I did and should have insisted 5 years earlier.
Best to you... you will be ok.
Don't you have some surgery that needs to happen soon? (therapeutic fib--make it a rotator cuff). She'll have to go somewhere while you recover. Arrange respite at the AL you've chosen. She may love it.
Wait for a hospitalization. Discharge her to rehab which then becomes permanent LTC.
Have you said "mom, I can't do this anymore"? Find 2 ALs nearby and give her a choice. Keep your language VERY simple; short sentences.
With my mom I had to wait on the medical crisis and move her from hospital directly to assisted living. She was about 3 years too long at home by this time.
And get ready for the tears, anger and guilt. But you have to save yoursel and have a life. Mom will be fine.
One idea is be firm. For example, you could say, listen mom, I need to i work. Or I'm busy and can't give you all you need. But there is a nice place that can. Mention the benefits of plenty of people to see etc.
All the best
I know I would do the caretaker route in her home as long as it worked. You haven’t tried that yet so you don’t know. I couldn’t do what you are doing now. id probably move her home. When she progresses I’d move her to the assisted living near you. She sounds to me like she just needs a few hours per day of care.