Visiting the old house & car - what to do?

Diversion. Divert conversations away from the car and house

I think you saying you have forgotten keys is a good one. White lie... I will bring them next time I come... and when asked for the keys say something like "oh gosh, my mind is a sieve, I've forgotten them, I will bring them next time" until the request for keys doesn't happen. Which sadly, it will do eventually....

As to the house, similar diversion, obviously slightly different, no petrol in car, you got an appointment, but we will go next time I come or other "excuse" that suits and is believable/acceptable by dad.

Some people have taken pwd back to their homes, and it's been a good experience, to be honest only read in here of one good experience..... sometimes it's not the home - or car - that is really what they want, it's the normality of home... Could be any home from the last one or his childhood home where all things were easy..... Worrying about the car..... That's what men do isn't it.... That they want. His worrying, isn't necessarily the same type of worry your logical brain would have.

xxx


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I honestly wouldnt take him back there.
I think it would go one of two ways
1) he wont remember it. I took mum back to her home to pick out a few things - pictures etc - to take back to her CH room and she did not know that it was her home or her things. The home she had been asking to see again wasnt that one and she got very confused and aggressive about it.
2) He will refuse to go back to his CH and it will only add to his agitation.

Even if he is OK seeing it and goes back happily to his CH I doubt that he will remember, so it wont resolve anything and he will continue asking about it. Dont say that you wont take him, but be very vague about when you will be going - theres problems with your car ........... the weather is appalling........ they are digging up the road outside........... you are sorting out the guttering................ so you will have to go next week/when its done.

 

Photographs

If I were you I would take lots of photographs and make an album of them for your father to keep with him. That way he can "see" his car and house and you can prove that you haven't sold it (even if you have or do in the future).

If you find this upsets him then take the album away.

Take photos of every room of the house (and the garden and outside) and inside and outside the car. Hopefully he will love it and find it reassuring.

Pick a nice sunny day to do this.

 

My mother has the same obsession about her car. She asks me constantly what will happen to it. She tells everyone about the beautiful car she has in the garage and isn't allowed to drive. It's a 1998 Corolla with about 30,000 km on the clock. Perfectly okay but you'd think it was a Rolls the way she talks about it.

Whatever I say is the wrong thing. None of the grandkids want it and if my brother takes it it won't be garaged and that distresses her. If I say we'll sell it she launches into a fit about how I mustn't let any of her neighbours have it as they aren't deserving.

Fortunately she had a dream in the CH that bikies invaded her home and she now thinks it's not a safe place to live. She is convinced it happened so I let her think it.

I don't think lying is necessarily wrong in these cases. He might accept it if you say the house and car have been sold to some nice people who are taking wonderful care of them. I tell my mother she can't live alone any more and that's that. I'm firm about it and won't argue the point. Perhaps if you take that stance with dad he will accept he's there to stay and his stuff has been sold.

 

I was going to suggest this.

 

It wasn't easy being firm. I tried the persuasive approach first and that did no good at all. She'd agree to the move to a CH and then change her mind.

We kept waiting for a crisis that never happened and when a vacancy came up at the CH she'd previously visited and approved, I simply said "you're going mum". I got my brother to reluctantly support me because he didn't want to upset her. She kept begging me to let her stay at home but I was resolute. It was terribly hard but I had to do it for all our sakes.

It concerns me how we seem to go on expecting rational responses from dementia sufferers. They are not rational; they do not know what's best for them and when upset they seem to recover very quickly. My mum cries when I'm firm with her and a minute later it's forgotten. She asks "when am I going home?" And I say "you're not - you can't look after yourself properly". She cries, I change the subject and we move on.

I know that sounds blunt but I found it's the best strategy and kinder over all. Why give dad false hope re his house and car? I think photos may actually prolong the attachment.

Good luck!

 

Horses for courses. If that approach works then thats fine, but if you are having to say the same thing and make her cry over and over again, when saying "next week" firmly will get her to move on without crying, that might be considered kinder.
Also, mum may forget what has happened, but it leaves a sort of emotional echo. She sort of remembers that something made her cry even if she cant remember what it was.

 

I know I sounded cruel but I deliver it in a empathic manner. I pat her hand and explain kindly that she is not capable any more of taking care of herself and her home. She cries because she knows it's true and that distresses her.

The fact is I simply can't lie. To give her false hope seems much more unkind to me although it may be my misconception. I feel simply terrible lying to her and her tears are easier for me to deal with as they are over in 20 seconds. She never argues about having to stay there. I think she is still lucid enough to understand I'm not punishing her in any way. After she has a brief cry (no actual tears) she always says "I never thought I'd end up in one of these places" at which point I always say "I didn't either mum but if you have to be how lucky we found this beautiful place?"

 

I dont like lying either, but as mums dementia has progressed I have found that the only way to avoid distress is to be "economical with the truth". I tend to tell half-truths.
"when can I go home?" "when the doctor says you are well enough" - she has (mostly) stopped saying this now
"are you looking after my home?" "yes of course I am" - (Im looking after it so well, that I am selling it it!)
"what have you done to my home?" "Ive cleaned out the fridge mum" - (and Im clearing out all the cupboards too)
It also helps that I know the home she is thinking about is not actually her bungalow. It seems to be a composite picture of lots of places in her past.

I think that if I told her the complete truth it would reinforce it all in her mind - she may forget the conversation, but there would be unease about the bungalow left in her mind. It is no longer possible to have a rational conversation about such things. She does not understand that she has dementia and in her mind she was perfectly able to look after herself. In the early stages I tried to reason with her and explain why she needed help, but she would either get angry, or she would seem to take it in and I thought Id had a proper conversation with her, only for her to say at the end "yes I understand all that, but why do I need help?"

But there is no one one-size-fits-all approach. As I said - "horses for courses" and we just have to do what works.

 

I do wish somebody would define what is the best way to deal with these questions ie to lie or not to lie. Those I know with experience say "tell her she can go home next week". Really? That might make her stop asking temporarily but what if that's the one thing she does remember? That's what scares me.

And I why do they all want to go home? Is a care home really that bad? I quite fancy the idea of 3 gourmet meals a day and people cleaning my room and checking up on me. I admit I've always enjoyed hospital stays for this reason. Home was lonely and confusing and she was anxious the entire time.

I suppose the answer is locked away inside the tortured mind of the dementia sufferer. It's like their brains have been rewired and the circuits are all wrong. I speak to her as if everything is as it should be but what I say is irrelevant as she either doesn't understand or immediately forgets what I've told her.

These conversations are so draining eg where's my money; where's my bank book; what's happened to my car; when am I going home; someone stole my money; or some lurid account of an event that she must have dreamt but believes really happened. She often tells me I'm the crazy one when I dispute the facts. Today she told my brother my house was broken into on the weekend. This is not the sort of thing you want to confirm in order to appease her.

I wish someone would write a rule book.

 

Answering questions

This might be off at a bit of a tangent, but it stumps me what to say.

Mum has taken to asking where her mum is almost daily. My nan has been dead 25 years.

I have read that it would be best to use love lies and distraction, but she won't be distracted, she's quite fixated on this. I know that if I try saying we'll ring her later, or we'll visit soon she is likely to want to make contact there and then.

I'm struggling to lie and so have therefore told the truth saying she's not with us now, but its upsetting mum. If I lie and she works it out she will be more upset by the lie and that is very likely to happen. Mum's memory is poor, but knows nan is dead more often than she thinks nan is still alive, she likes us to put flowers on the grave regularly and she knows its her mum's grave, its almost like there is her mum who passed on and her other mum who is still around, the person she is looking for.

 

AndreaP, I agree: I wish someone would hand me the guidebook/rule book/operations manual for dementia!

I'm not going to tell you what to do or what not to do. You have to do what works for you and your mother. Certainly nobody wants to be a liar.

I was at a dementia lecture a couple of weeks ago, given by a neurologist, and he talked about some of things you mentioned in your post. In case it's helpful, I'll look in my notes and see what he said.

The thing about "going home" seems to be common to many people with dementia. In some cases, people do seem to be remembering a specific place they lived, but in other cases, it seems to be less about a real place (such as a former home) and more about wanting to be somewhere they feel safe and comforted. I don't think it literally means that the care home is a bad, terrible, awful place, at least not usually for most people. Others here might have more insight about that. My mother wanted to go "home" from the hospital and then there was a lot of wanting to go "home" when she first moved into the care home, but that has stopped now (she's been there for about six months). In her case, she was saying she wanted to go to her home where she actually had been living, but of course she thought it was safe and clean and okay for her live alone, because there was "nothing wrong" with her. All true in her dementia mind. In reality, of course, it wasn't safe, it was filthy and she could not live alone. I'm sure this sounds familiar to many of you.

So, my notes from the lecture the other week say that a lot of dementia patients who talk about going home are saying this because they have an instinctive feeling of uncertainty or not knowing what to do, and this presents as "I want to go home," where "home" represents a place where they felt safe and had a routine and a job (they were a child/student/parent/accountant/whatever). The doctor says this can be triggered by a person and/or the environment, and the feeling comes from a neural network in the limbic system, which is not something under conscious control--it just happens.

This can happen with other things besides "going home," but that seems relevant to what Andrea is talking about.

Then the doctor talked a bit about delusions. A delusion is a false, fixed belief imbued with a lot of emotion. This happens often with dementia.

Sometimes a person with dementia will respond to a situation or a person with a delusion, or tell a particular person the same delusion repeatedly. Although the person with dementia won't remember the conversation, they may retain a emotional memory associated with the person they talked to. So a person may (inadvertently) become a "trigger" for a particular conversation/delusion. They may also now associate that feeling (often negative) with you, when they see you.

He recommended trying distraction/redirection by someone who isn't the trigger if possible (especially in a situation where the person is very upset), but that's not always possible, of course.

The doctor said that you don't necessarily have to lie, but what you say/how you respond should not challenge their reality. It is very important NOT to confront a delusion. Do respond, do be vague and redirect/distract, and do reassure them you are taking it seriously.

He gave an example about talking to a patient with a delusion that the staff were stealing her socks; I'll type that up if anyone would find that helpful.

As concerns the repetition: they do not remember they asked you five times already, or that you just had this conversation, but they can have a feeling about it. That feeling comes from the limbic system, not the cortex, and again, is not something they are aware of/have control over. They are not making a conscious decision to ask you again.

There was a lot of very technical neurology stuff I didn't take notes on as I didn't understand it terribly well, but I hope some of that is helpful.

To be more specific with Andrea: my mother was VERY upset (especially with me but not with my husband) about going into the hospital and moving to the care home, and got very angry and nasty and loud about it. Of course she could not remember/understand why she was in hospital (she was found wandering in the cold with no coat and had clearly fallen and hurt herself, was taken to the ER/A&E department, and then sectioned/admitted to Geriatric Psych) and in her head she was fine, so why was she there? Oh, it went on and on and over and over and it was awful. Then, when she went to the care home, it was the same thing, there's nothing wrong with me, I can look after myself, I want to go home, why have you done this to me, and on and on and on.

Andrea, my mother was also miserable at home. She was alone and lonely, she was anxious all the time, she wasn't eating or sleeping or washing, she lost a lot of weight, it was horrible, just horrible. Like you, I think a care home sounds great. It's like the dormitory at university, without exams! Someone to shop and cook for me, and clean my bathroom, and do my laundry, sounds just fine. Not to mention the excursions and activities and all the ice cream I can eat and people to talk to 24/7.

My mother is somewhere in the middle-ish range of Alzheimer's type dementia, and has no short term memory. None. She can still carry on a reasonably normal sounding conversation, as long as you don't mind talking about the same things over and over. The neurologist explained to me that with some types of memory impairment, there are memories that are properly coded and stored but they can't be properly retrieved, so they come out scrambled or mixed up with other memories (like a damaged computer file shows garbled text). In other cases, things that happen don't get put into storage at all, and so there literally is no memory to retrieve. You cannot access, what isn't there (if the computer did a search, there would be nothing to find).

I'm sorry as this seems to be all over the place.

Like Canary, I mostly don't lie to my mother, but am selective about the truth I tell. My mother left her condo in January and of course my husband and I immediately began to clean it out, knowing she would not return and we would need to sell it eventually, as she needs the money.

When my mother says, accusingly or otherwise, "what have you done with the condo?" I say, well, Brian and I cleaned out the fridge so the food wouldn't spoil. She always says that's a good idea and sometimes the conversation stops there.

When she says, have you sold it and taken all my money? I say, calmly, of course not. (Once I do sell it, I will lie to her because there is no other option for me.) But I always say, we are keeping an eye on things and it's fine. And that's as far as she has ever gone with the conversation, even when she is at her worst.

When she asked me, why am I here (in the hospital or care home) I learned to answer, because the doctors said you needed to stay until they got your medicines sorted out. For whatever reason, this was the answer she accepted. When she would ask, how long do I have to be here? I would say, I don't know how long you will have to be here. I hope it won't be long. Then she would say, well, I don't want to be here, I want to go home now! My response was: I know you want to go home as soon as you can. Of course you want to go home. Who wouldn't? I don't know when you can go home, but we will ask the doctor/nurse/staff when you can go home. And then I'd offer her coffee or food or a snack or just change the subject. Repeated as necessary.

So this was using the combination of things that I found worked for my mother:
-calm demeanor and tone of voice
-respond to what she says
-don't contradict, argue, or correct
-offer reassurance (I'll take care of that, I'll look into that for you)
-use humour where possible (works with my mother; might not work for you; don't ever use humour with someone who is paranoid)
-shift any perceived blame to someone else, like a doctor
-distract or change the subject

I have no idea if any of that will work or not, or help or not, but thought it couldn't hurt to put it out there.

I hate dementia.

 

Thank you for that. I think I understand better what's happening to her.

One thing I've discovered is it's much easier to visit her with my husband in tow. She is much nicer to me when he's there and today she didn't complain once. My brother got both barrels yesterday however.

She told us a long complicated story about how while she was out her unit had been burgled. She has told everyone this story and as soon as I arrived she asked how much mess there was. I told her she must have dreamed it. She said "oh this is the trouble with my brain now". When I left she asked again "are you sure it didn't happen?"

I spoke to the doctor there today and he confirmed what I suspected, that mum is a bit atypical. He asked her a lot of questions and was surprised how coherent she was. But then there is the very odd night time behaviour, paranoia and false beliefs. He said she presents and performs much better on testing than she really is.

Having maintained this with my brother for a LONG time I felt somewhat vindicated

 

Amy I don't visit this forum very often. My Dad has AD, after a failed admission to a care home he returned to his home where he lives with my brother. Not as ideal as it sounds, my bro has mental illness and only does a few things to help (and requires a lot of support from me), Dad is looked after by professional carers and I manage the overall situation but don't live there. A couple of years ago I had big problems with his aggression, wandering, shoplifting, entering people's houses, repeatedly demanding stuff that was impossible like getting his car back and driving to Italy.
Anyway just wanted to say thanks for your post. Even though Dad's AD has progressed and his language has reduced so his demands are not so frequent or aggressively formulated anymore, it's still good to read these coping strategies.
Dad may ask to go home and often looks like he's looking for a better place to be., even though he's in his own home. He grew up on Long Island so I definitely will not be taking him back there! Like you I am convinced that it's better to make emollient noises, not confront, re direct and wait for the agitation to pass.
That took some getting used to because in just about every other sphere of human communication you are advised not to do that, but to be truthful, unmanipulative etc.
That's one thing that's so hard with dementia, all the skills you learn as you go along in life are not necessarily what's called for and you have to learn a whole new set.