We are trying to keep my MIL with moderate dementia in her own house as long as possible. We monitor her on security cameras as she refuses to wear a fall alarm. It is not a good solution, but she is super stubborn and fights almost everything we do. What are we supposed to do? Staple the alarm to her? We cannot force her into a care facility. Her PCP says she should be in one.
A new problem we have encountered is meals. We had been stocking her freezer with frozen meals (Marie Calendar, etc.) and her fridge with deli items, grab and eat and things I had cooked as she hasn't cooked in the last two years. I found a freezer meal in her microwave Friday. It was still there Sunday. What is she doing with food? We can't tell what she eats and what she throws away.
I tried something new. I pulled granola and cereal bars out of their boxes and put them into a basket as she was not eating them out of the boxes. That seems to interest her more and signal FOOD. I had been leaving each food item I had prepared in a plastic container with a red lid in her fridge. Recently, those don't seem to have been opened. This week I have tried plating her food into meals on divided plates with clear covers. My husband say he observed her taking a bite or two out of each of the six meals I had plated yesterday. She lives 3 miles away and we are newly retired, so running food over two or three times a week is not an issue. How can we do better on her being able to recognize and access meals? We don't do going over for every meal. Living with us is a no go. We do have our boundaries too.
We know that some type of care facility is in her near future. We know we are only playing a delay game to make her remaining time a pleasant as possible. Her doctor is arranging a visiting nurse to help with things she won't let us do like personal care and bathing.
I do not know why people keep saying it is unpleasant, my mother has made new friends her own age, bus trips, activities. Being alone, eating alone is not the answer.
Take a good long look from the outside, this is not about what your needs are, what you want to do....it is about what is best for her, it is always better to do this before it becomes an absolute necessity, they adjust much better.
Might be time to reframe your thinking.
You say in your post you can not "force her into a care facility"
Why not?
Is your husband POA? If not who is? The POA is the one that makes the decision that can place her in Memory Care or not. Particularly since her PCP states that she should be in Memory Care.
Actually if anything happens to her while she is living alone there is the very slight possibility that APS may be contacted as it might be considered "neglect".
Unless you or someone else is going to be there with her for meals there is no way that you can be assured that she is going to eat.
That is the least of the potential problems.
What if she goes to get the mail...and decides to take a walk...and gets lost.
What if she leaves the water running ... how soon would it be before you discovered the flood?
Is it possible that she could leave the stove on or have you disabled it?
I would be very uncomfortable allowing her to continue to live alone.
We do have POA and healthcare POA.
As far as wandering, she is unable to walk very far because of arthritis. So that keeps her home.
She could leave the stove on. We do have cameras that monitor the kitchen. I have not caught her using the stove. She uses mostly the microwave.
I’m not going to go into ideas for meals, I’m sure others will.
But here’s what I want you & hubs to pause & seriously, SERIOUSLY, think about: what if there is a fire? Do you really want her putting something in the micro and setting the dial on till forever and having a fire happen? Do you actually want her reheating food on the stove? Even if she has an induction cooktop, there still is burn risk. Do you think she has the ability to tell if a food is safe to eat? I’d be really concerned about this, especially in the current heat wave across the US. The way you describe her, she does is not seem competent or cognitive enough to safely be able to live on her own and be able to judge if something is an issue or an emergency.
Did her MD tell you she needed a skilled nursing facility aka a NH or did he/she leave it more open ended? If so, please have her get a needs assessment done. It’s usually Where a duet of RN and SW come to her home to talk with her and observe her to see what her abilities are so that they can recommend what level of care she needs. You don’t want to be wasting time and energy looking at AL or MC when it’s a NH that she most definitely needs to be in.
Sometimes IL or AL type of facilities will do “play dates” rather than a required outside assessment. My moms did: we went for a tour and lunch, they had her eat at the residents table and then she went off to participate in a regularly scheduled residents activity (maybe arts & crafts, or gardening) that’s interactive. All done to see if she “fit” in for ADL & social level somewhat expected. Mom even tho in her 90’s was good for IL. FWIW the IL had regular fire drills and if a resident could not do them (the big fail was waiting for elevators), the resident got a 30 day notice they needed to move to higher level of care. Fortunately my mom aced the fire drills, her final straw to go from IL to NH were wandering hallways at night and imaginary animals.
I’d also be really concerned about MiLs dehydration. If she doesn’t understand eating, I bet she’s not drinking enough fresh water. If she gets confused and goes outside in current heat wave, it’s really a health concern if not a crisis for folks. One advantage should this happen, is that she will be taken via EMS to the ER/ED and it is a way to get her out of her home permanently so instead of returning her back to her home she goes into a facility. Just sayin’….
Her PCP ordered home health care. He feels it will be better for an incident to move her from the ER to a facility.
We are aware that there are risks to leaving her in her home.
I can't even get to her a beauty shop. I don't know how I can get her to look at AL.
We tried to get her to agree to look at AL two years ago. She adamantly refused.
We think she would prefer to die in a house fire, awful as that sounds. She insists she will not leave home, that she wants to die there.
The kicker: she was once a discharge planning nurse. She put people into NH.
Do whatever it takes to get her transitioned. It may require a call to APS if no one is her PoA or legal guardian. Or, a trip to the ER where it may be possible to work with their social worker to get her directly admitted to a facility.
Stop providing meals and everything else that you’re doing. None of that is in her best interest anymore.
My Mom was in her final stages when I placed her. I told her the day we took her she was going to a new apartment and would make new friends. I was lucky, she acclimated well. Your MIL should not be alone now.
I see you are checking off all the boxes.
PCP care plan with HHC on the way. Cameras, Legal Advice, Boundaries…
Good for you.
Re: Food
What I learned along the way is make it easy for them to see what is available.
Make it attractive. Cut sandwiches in four neat squares. Or strips or triangles. If you use the divided containers you can put a couple of sides like apple slices with peanut butter or a little box of raisins or a scoop of pasta or fruit salad. A small piece of chocolate. or a few kisses if she likes chocolate.
Don’t put too much in the fridge at once. It is overwhelming to them. Puddings, fruit cups, sandwiches, deviled eggs, cheese sticks, etc all can be placed in a dish with clear plastic on top or in a baggy. Easy to see what is in it.
You can also put a couple of your red topped containers to see if she is curious enough to open. She probably won’t remember what you tell her is in them. Notice if they are easy for her to open, carry etc.
If you make a batch of dinners ahead of time, put a freezer tape strip on top with the date. This is for you, not her. This way you can quickly discard what is past its date. Store them in a garage fridge or one at your house. When you go over, take just enough in. Put small cups of ice cream in her freezer if she likes ice cream. Aunt loved it but after her dementia advanced, she would forget about it unless a commercial came on for ice cream.
Near where she usually sits, place a protein drink and several small bottles of water with the lid loosened. I usually put 2 or 3 at a time but they were checked daily. If you won’t be back for 3 days, put 6 out. Pay attention to how many are gone. She may drink tap water if that is her habit. Fill a few glasses and put where she will see them.
The chocolate FairLife brand is a good protein drink (30 grams) to try. We need 90 grams of protein a day. Hard to get for most of us. We also need a good deal of fiber 35 grams is my goal. Also hard to get. Read labels. Benefiber is tasteless and no unpleasant texture. Just stir a couple of spoons in her drink when you visit. But don’t give too much fiber if she isn’t drinking enough liquid. A good multi vitamin, Vit D3 and fish oil are all helpful supplements. Vit D can help her mood if she is deficient, most are. She probably is.
Put a lined garbage can near wherever she sits. Pay attention to what is in the garbage. Sometimes you might find things you would rather keep. (teeth, glasses, remote, spoons). Also find those things in her chair, under the bed etc. At min you will know what food she threw away….unless she has a dog she is feeding the food to. That happens.
Put a pretty dish by her chair with spoons. Also have napkins, wipes handy. I kept a bowl of fruit nearby. A couple of bananas, cuties. Someone recently recommended a small frig near where they sit. They are very reasonable these days and she might look in for watermelon or a quick sandwich if it is right there.
I always brought fresh flowers on the regular. Balloons were a treat as well.
If you could find someone who would work a couple of hours each morning it’s the best help. I had to find some one to give thyroid Med before coffee. Hard to hire someone for just one hour. But I found a great lady for two hours. She made a hot breakfast each morning, helped aunt take meds, get dressed, watched out for the dog, interacted with MOW, therapists, home health, ran the vacuum and mopped. We loved her. Later on she worked 3 hours and would get lunch ready before she left. Would come when an antibiotic needed to be given, the plumber was on the way, etc etc.
Take the knobs off the stove and ask home health to bring in a therapist for evaluation. Will help with the arthritis, balance etc.
fridge. Thought that should last 3 to 6 days. Two days later there are
still 6 meals, some with bites missing....I think I need to take them
over 4 or less at a time. She has eaten the strawberries out of them. She also ate the bowl of melon pieces. She ate a bunch of fresh pickled cukes. Would not touch them before I sliced and dressed them although she has salad dressing in her fridge. She had potatoes on her counter for months but didn't do a thing with them. I turned them into mashed potatoes and now she sees them as food. Will just have to see how this develops. Hoping the HHC nurse will be able to asssess the situation better and make recommendations. She snarfs baked goods like cookies and muffins. She is also diabetic, untreated. A1c is 7.9. She denies being diabetic. Denial is so huge.
She isn't remembering how to do meal set up or even if she's eaten, and she's unable to recognize when she's hungry.
My own experience with this phase was that she will not be able to adapt to anything new, including reminders, notes, etc. She's past that point, and will not be able to pick up a new routine.
If she's missing meals, she's missing meds too.
Tried her on a puzzle today - an easy one for 8+ year olds. She was finally able to put a few pieces together. It's a world map, so should not be hard. A lot of cognitive function is gone. Except the word NO nursing home.
But it won’t. Mom can’t handle living alone at home anymore! One suggestion might work fine for a week or two, and then something worse happens like she’s peeing in the corner of her room because she can’t remember what the toilet is for. And she’s still forgetting to eat and take her meds. And so on.
She has a serious illness that will eventually kill her. In the meantime, she’s engaging in harmful behaviors and being enabled by her loving family.
Take off the blinders and stop looking for hope because that’s holding up finding a place where this poor sick woman can be cared for 24/7.
Take care of yourself!!!
Dropping in is a good time to take a peek around the house - just because you say she hasn't cooked in a long time doesn't mean she won't suddenly forget she no longer cooks and turns on a burner or oven.
Might be time to figure out the finances. Does she have enough money to go to facility care? If yes, she has enough to hire some folks to go to the house. Since she can be a little ornery, get the hired help to identify themselves as being sent by the doctor. If hubs isn't going to check on his mom every day and you are firm on "we" don't do this or that, use her funds to help keep her in her own home where things are familiar by hiring help. I would hold back placing her in a facility as long as possible - if she understands she is being forced to go, she's going to spend her days sad and angry in a strange place...until her thoughts are totally lost to the disease.
Your last ditch effort might be to hire someone to make sure a meal is put in front of her and ensures that she eats something.
And yes you can move her. Her doctor will sign the papers of commitment. If you search for facilities, you can ask about creating a ruse to physically get her there. They have experienced it.
She either needs 12/7 (or overnight 24/7) caregivers or in a facility.
There comes a point where the family / whoever has legal authority needs to make decisions.
You cannot leave it up to a person with dementia to make their own decisions involving their well-being. If / whoever has legal authority (and I hope all this is in order) needs to make decisions - and deal with her feelings about it as they occur.
You want to acknowledge her concerns although not agree with her.
She will not want nor like anything new or any changes. This is a given.
If you do not get / have MD authorization of her dementia / health, call the APS to do an investigation.
As you say here "... make her reamining time as pleasant as possible."
NO. You are not really doing this. You are reacting out of fear (and caring) although your logic is misplaced due to emotional filters (caring).
This cannot continue on as it is.
If it does, it is a major accident or situation waiting to happen - and then you not only pick up the pieces and MAKE arrangements ASAP [which is harder and you don't want this ... ], you then also need to deal with an elder loved one who is injured and in (more/major) pain, both physical and mental.
You do not want to wait until this scenario happens.
If you do not know what your legal rights are, see an attorney specializing in elder care (and legal documents giving you / family authority to manage her life).
Gena / Touch Matters
Dad had dementia and lymphoma and died a very much different man than he always was. Throughout, my care and supervision was aimed toward taking care of the person he was on THAT DAY. And he was a different person on EACH day.
”Some studies have found that Aricept can make a certain form of dementia worse. Specifically, Aricept may worsen dementia caused by frontotemporal lobar degeneration (FTLD). According to the National Institute on Aging , FTLD is the leading cause of dementia in people younger than age 60.”
I have a Bullet and make yogurt, fruit (incl a couple of prunes) and many other things. If she'll drink it, she'll get lots of nutrition.
I add:
banana
yogurt
piece of ginger root; piece of garlic (you cannot taste it)
Cinnamon - 1 teaspoon
strawberries (I buy from Costo / frozen)
Collogen (powder)
Chia seeds (don't recommend as they can / do get stuck in teeth)
Lion's mane
a bit of almond butter or (raw) almonds
You can try out different things. It all blends although be aware of the crunchy tings like almonds, if she can't chew them up.
Liquid: coconut water, juice, or some kind of milk-like liquid.
You can also freeze juice in an ice cube tray if you want more cold.
And, I make enough for two days. You can put in previous water bottles so keep a few on hand.
Gena / Touch Matters
If her PCP says she should be in AC and it certainly sounds like the risks and downward slide is outweighing the benefits of being in her own home I would move her sooner than later. A Place for Mom has been invaluable in helping us multiple times find amazing places for our parents. It doesn’t have to be the horror story you hear about especially if mom has finances behind her that you talk about for home care and with your involvement.
This is a long ball game and your caregiving will not end with placement in AL. But you need to not burn out at this point so you have the bandwidth for the long haul. It can be years and even decades. Good luck.
I sound so nasty and crabby. It was so different with my mother who lived to be the same age as my MIL. She'd tell me I need this done. I can't reach that. Would you help me with this? We would visit and talk about her memories. We would look at old pictures. We did pedicures on her fungus messed up toenails. (that was a job!) I lived 2 hours away, so when I came, I tried to get some major things done for her. Major bathroom cleaning, house cleaning. My sister did grocery store and errand running. A neighbor took her to church. My mother even checked herself into assisted living for respite care for a few weeks. My grandmother checked herself into a nursing home as living with family would not work. The staff loved her. She made good friends with her roommate and wasn't as lonely. She had many visitors. This is how I expected old age to be, not the NO monster.
She is basically starving herself. What is happening with the laundry or the cleaning of the general area where she lives? Does she take any medications? How does the trash leave the house?
I would start looking for places to place her. Some of these places have long waits. Unless she is a wanderer, she might not have to go into Memory Care. She might be able to be placed in Assisted Living with additional care to ensure she gets enough nourishment to sustain her. The extra activities will also help her mentally.
24/7 … and she wouldn’t be isolated
at home
Tell mom either this or assisted living because she needs help.
Who knows what she is doing with her medications.
Maybe her doctor can make sone recommendations.
The first thing they did with my father at his memory care was put him on a schedule. We were shocked! After YEARS of being up all night and sleeping late in the day, he was going to bed at 9 and getting up at 7. Within days they had this done. He has adjusted well and though still asks when he’s going home, he’s getting more social interaction than he has had in years.
If things weren’t so relatively easy and pleasant at her house (because you prop her up and do everything for her) she might be more willing to hear to other ideas. I’d unplug the stove or disconnect the gas immediately. Any appliances that can cause fire - unplug or remove.
Also look around at the house you will have to clean out. Is there any of that you can get started on when you do visit? Fill up her garbage can when you put it out each week at the very least. People have a shocking amount of stuff in their closets and cabinets, basements and garages …
The second night she was there, she attacked me while I was sleeping. Had no idea that I was her daughter who has been close to her for my entire life. I'm lucky she did not think to use a kitchen knife or something equally as dangerous. It was the single most horrifying situation I've been through. She was delusional and hallucinating. My own beloved mother. I would never wish that on anyone. And getting her into a memory care took a few days. It was awful to have to barricade my bedroom door every night to ensure that there wasn't a repeat of the attack. I was lucky and had scouted out several very nice MC near my home. It helped to already have the contacts and be able to get her someplace that was safe for both of us.
We do not know how our loved ones will react when they have dementia. I had a difficult time believing some of the stories I heard from others until I had to live through a nightmare.
If someone with dementia can get this far with such hallucinations, no telling what the next hallucination would cause him to do, such as harm to someone in the household. Never think it couldn’t happen. They do not and cannot think normally.
She might want to stay in her house as long as possible but it is NOT working. She is not safe and is not at all independent. She will never be able to recognize this with her dementia.
You can try to limp it along if you want to but I would put my energy into finding a place and getting her moved ASAP. I know that's now what you asked for help with but this is the best path for you to take.