My 89 year old wife has what I assume is dementia, according to all that I have read. Besides the memory issues (especially short-term), she gets easily confused when confronted with almost any task. She can't dial a phone, set an alarm clock, or set the thermostat. She can be perfectly normal for hours on end and then lapse into irrational thoughts, or even worse, irrational behavior based on those thoughts. She fired a house cleaning lady that we've had for several years because she was convinced she was "part of the Mexican mafia." She won't hire a replacement because she thinks the flu bugs in our house will be carried back to the house cleaner's children.
And then there's the isolation. She hasn't been out of the house for over 3 months because she has convinced herself she has bowel incontinence and doesn't want to be anyplace where she doesn't have immediate access to a restroom. She doesn't have bowel incontinence (I do the laundry and I would know) but even if she did, she doesn't want to change her diet to alleviate the problem - that would mean she couldn't have her ice cream and chocolate. The fact is that she doesn't want any help to make her life better, claiming it's all due to old age and nothing can be done about it.
This morning, she had an appointment with a neurologist for evaluation and hopefully a plan for treatment. She didn't want to go but I got her to agree by literally begging and crying. When she woke up this morning, she went into a panic attack (at 5AM) and was clawing at the phone to call and cancel the appointment. Either real or faked, she continued to gasp for breath until I finally gave in and agreed to cancel the appointment.
How do you deal with that? I can't drag her out of the house.
When you mentioned her working herself up into a hysterical panic and the gasping for breath, this really spoke to me. My mother has been doing exactly this since I was a little kid. It's a performance and a tool to get more attention or to manipulate others so the performer (in this case your wife) will get her own way. NEVER give in to this nonsense whether it's dementia-related or not because believe me, it will make any dementia worse if you cater to it. I know this because I was an in-home caregiver to many people with every kind of dementia and without for 25 years. 'Babying' and catering to them never helps. The only time the 'babying' appropriate is if they are so far gone with dementia that they're basically a toddler again. Your wife from what you say is nowhere near this yet. When a demented person gets to this point, they should be in residential care.
Allowing the person with dementia to give orders and make asinine demands on family and caregivers while everyone scrambles frantically to fulfill these orders and demands cannot be allowed. This behavior is throwing gasoline on a fire.
When I set a boundary with my mother and refused to be a supporting actor in her hysterical performances, she cut back on them. When the person sees that this behavior does not get them attention or what they want, it becomes less. Even with moderate dementia I found. Now we are at the point where the choices are make it work with homecare or it's a nursing home. She still tries to start up a little with me and that's when I leave. If it's on the phone, that's when the call ends. I ignore it and so should you.
You get your wife to her doctor and tell him you need him to prescribe liquid lorazepam. It's an anti-anxiety agent. When she starts working herself up into a panic, you dose her. Put it in a drink or some ice cream. Or directly into her mouth if you have to.
You have to hire homecare now and this is how you do it. The first two times the homecare aide comes to your house, you all get to know each other. The third time, you leave for the duration of her shift. Your wife may work herself up, throw a tantrum, whatever. People in homecare deal with this kind of thing every day. She will adjust to her homecare aide. When she does, you start sending her to adult daycare (if there's one in your area) a few days a week. At first, you send the aide with her a few times. Then you don't. Transportation is provided to and from daycare.
As for her doctor's appointments, you don't tell her she's going until the day of. Try to get the appointments during the hours of the homecare aide you need to hire and they will help you. Be very casual and 'no big deal' about it. Don't even tell her what kind of appointment it is. Tell her it's a wellness visit that Medicare insists on for all seniors in order to get a discount on the premiums. I can't even tell you how many resistant seniors I've gotten to a doctors appoinments with this reason.
I’m sorry to read about your situation but rest assured that you are in the company of people on this tread who in many respects have walked in your shoes.
When a loved one starts to cognitively decline, they may go through several stages and one stage has to do with a level paranoia towards people and situations. Your wife’s continuous worry about her incontinence, flu bugs, the housekeeper, etc are a reflection that she has crossed over the line and at times will no longer be rational.
I read some of the other comments and therapeutic fibs or white lies fall under the idea that it’s best not to try and argue, plead or rationalize with a person when they are having a very irrational moment. Instead, respond with whatever will validate their feelings at the time and let them calm down. If your wife imagines there is flu bug in the house, just agree and that you’ll take care of it by cleaning the house shortly. It will be easier on her and you.
The evaluation of course needs to be done, and you will now have to discuss with the evaluating doctor ways to get your wife in for this evaluation, whether ambulance or otherwise. It must be done. So discuss with the MD options now going forward for her evaluation.
It is looking like after this evaluation you will need to be looking for 24/7 care and placement. It is an almost impossible task for one person to do a job that requires, for safety and sanity, several shifts of several people on each shift.
My heart goes out to you. I hope you will update us after diagnosis.
Therapeutic fibs will be very helpful now. Please know that she doesn't need a neurologist for diagnosis. She can go for her free annual Medicare wellness exam and you discretely hand a pre-written note to the staff outlining the symptoms you are seeing. They will give her a basic cognitive and memory exam. This is important if you, or someone else, is her PoA. Very important. And if she doesn't have a PoA this needs to be a priority to put into place.
Dementia isn't easily diagnosed. All other medical causes are usually discounted by her primary doctor, like a UTI, dehydration, vitamin deficiency, diabetes, TIAs, etc. You can request more extensive cognitive testing, like a MoCA or SLUMS by asking her primary doc and maybe getting a referral to OT. A neurologist can diagnose for a tumor, or do imaging to pinpoint what type of dementia she has (if this is what she has) -- but to what end? It's a progressive disease with no real treatment and no cure.
You can hire a companion aid for her (tell her it's to help you). And, rehire the housecleaner (telling her it's for you). You can have the companion aid take her out while the housecleaner is there working, to minimize her paranoia.
Her primary doc can prescribe meds for depression and anxiety to help minimize some of the behaviors since dementia robs people of their ability to bring their minds to a place of contentedness, peace and trust.
You will need to be preemptive to get your wife to do things you need her to do, and figure out what other things to let slide (like if she doesn't want to shower as often as she used to). The caregiving needs to happen on the caregiver's terms or you will burnout. I have an agreement with my 95-yr old Mom that if she's no longer safe in her home or I am overwhelmed by her care, then we will have to have another solution: first we will try in-home aids and if that doesn't work out or she resists it, then she will be transitioned to a facility (which I already have picked out). She won't want to do it, but she will have to do it for both of our sakes.
I wish you all the best as you traverse this new terrain with her.
Paying the housecleaner and a homecare aide will not minimize the paranoia. It will just run up the bill unneccesarily. The woman needs to be on medication now and her husband will have to learn how to ignore with love if the plan is to keep her at home for as long as possible.
Could you try not telling her about the appointment until shortly before it’s time to leave, then tell her it’s for something else? I know you say she won’t leave the house due to fear of bowel incontinence. Could you tell her that it is to treat bowel incontinence? Or that the appointment is for both of you— she needs to be there? Or that it is for an adult child of yours, or to do something she likes (ice cream?) or because something needs to be done to the house (Maybe inspect it or treat it for something) and you and she need to vacate it for an hour?
The other approach would be to get a trained geriatric social worker or similar to come to your house. Again, do not tell her until shortly before the appointment or maybe even wait for the knock on the door. Then tell her this is a friend, neighbor, or someone there to address her concerns— whatever she says she is worried about. Or perhaps you could say it’s for you. You have an issue of some kind, this person is here to help you. (Which in fact is true.)
good luck!!!
Like already said, using "fiblets" or therapeutic fibs as they like to call it in the dementia world, can be a very helpful tool when you need to get your wife to do what you need/want her to do.
And of course you can hire in-home help under the guise that they are there to help you not her.
Also because folks with dementia do much better with a daily routine and don't like that routine disrupted, is more than likely the reason she doesn't want to leave the house, as she feels safe in her little routine.
The best thing you can now do is educate yourself more about this horrific disease of dementia, so you will better prepared for what is yet to come, as dementia only gets worse never better. I always recommend the book The 36 Hour Day as a great place to start, along with all the videos on YouTube by Teepa Snow(a dementia expert).
You have to now be in charge and do what you know is best for your wife, whether she likes it or not, and if she has to leave the house for any reason, do not tell her until the day off and then use a little "fiblet" if needed to get her out the door.
Dementia sucks, and there is nothing easy about it, but know that your wife can no longer help what she says or does, and despite it all she still loves you very much.
I wish you well as you take this very difficult journey with your wife.
Educate yourself on dementia (google Teepa Snow).
You do not 'ask' a person w dementia what they want to do. You do it.
It is a matter of understanding what dementia is, how the brain works/functions, where brain cells have died / are dying -
You need help in the home to care for her, and yourself.
You must take control of the situation for her benefit and yours.
You expect her to throw a tantrum or however she 'acts out.'
You do what you have to do ...
Even if ... you tell her you're taking her out for breakfast or lunch ... then you go to the medical appt.
More or equal to gtting a diagnosis, once she is deemed unable to (legally) care for herself, she may be entitled to some / more gov't / healthcare benefits. In addition, to you getting legal rights for handling all finances, etc. (if that isn't done already - with an attorney). You need the medical evaluation / diagnosis before you can move forward in many needed areas.
She is stuck and cannot change (or so I believe).
You have to. If you do not, you will burn out and then what will happen to her? And you?
You need to make do what is necessary to do - and stop allowing her to call the shots. Contact an independent medical social worker to help you through this process.
Gena / Touch Matters
I assume she has a primary care doctor who you are acquainted with? A primary care doctor can prescribe anti-anxiety medication. Can you contact him or her about getting her started on that, so she can calm down enough to be willing to see a doctor?
Another option is a telehealth visit. Or a doctor might be able to send a nurse practitioner to do an initial evaluation and get the anxiety under control.
Reach out to her current doctor(s) and explain that she urgently needs treatment but you can't physically get her out to an appointment. You aren't the only one who has dealt with this although it may feel like it with the isolation.
Keep us posted. I know this is just the first step on the road ahead.
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