I've been reading this thread regularly. It's really noticeable all the patience and trying to be kind, and do the right thing. How do we talk to unreasonable people when they are our parents seems to be a recurrent thing.
Update here is that my father is going for another eye surgery in the functioning eye (other one is blind). Pressure not controlled with the max of the drops and pills (glaucoma). The problem is that the local anaesthetic will make him fully blind for 3-20 hours. He's in assisted independent living (they ensure safety and make them supper) He has access to the supervised floor on a temporary basis but refuses it. Warns me off re it.
Shall I go behind his back and talk to the supervisor of the supervised floor as a contingency plan or as actual? I fear I get him back to his apartment/flat that he sits until he has to use toilet and falls, and I have to go back after work to call ambulance. He's insistent about it. I am on the verge of losing the hair I still have. I think I have to defy him. Dunno dunno.
I know it is suggested you share the ground a person is on but that is easier said than done at some phases of Alzheimer's. I know with my Mum it became really difficult because she kept changing the ground. So you did not know if the situation she thought she was in when she said something was the same as the situation she thought she was in when you replied. No, I am not exaggerating. Alright, I suspect my Mum has always had ADHD but learned to use it to her advantage as an adult. However, it seems to have two effects on her dementia; the fact that a new shiny thought is always preferable to an old one and when she wants to have an argument she will have an argument regardless (you cannot distract her, we have tried, nurses have tried).
Noprofit, if it is any consolation, my experience is that the adult children regularly inform the powers that be of things with the caution not to mention it to the parent in care. Defying your father's wishes when he is unable to appreciate the position he will be in is the normal and right thing to do. You don't have to mention it to him or you can wait until he has had the surgery and then suggest upping the level of care and miraculously it will all fall into place as if you had planned it that way. If he gets his back up before he goes in, can you tell him that you are planning to camp out on the floor in his room if he won't allow care? I remember my mother threatening such things and going so far as to arrive with her pillow and blanket under her arm. Many times I have forced the issue and had the person thank me afterwards. It is very hard to appreciate how rotten you will feel and how powerless it makes you feel when you have to accept care.
And for Mrs. S., why are you trying to make her do what she clearly does not want to do? Put a big sign up beside the phone with a few conversation starters and just let things like not partaking in the feast go right on by. Change the subject. Of course, after your conversation, you can always call the home and ask what is going on and so forth but I'd just go with how she feels and let her figure it out. She shouldn't have to do anything she doesn't want to at her age unless it is crucial to life.
Noprofit, if it is any consolation, my experience is that the adult children regularly inform the powers that be of things with the caution not to mention it to the parent in care. Defying your father's wishes when he is unable to appreciate the position he will be in is the normal and right thing to do. You don't have to mention it to him or you can wait until he has had the surgery and then suggest upping the level of care and miraculously it will all fall into place as if you had planned it that way. If he gets his back up before he goes in, can you tell him that you are planning to camp out on the floor in his room if he won't allow care? I remember my mother threatening such things and going so far as to arrive with her pillow and blanket under her arm. Many times I have forced the issue and had the person thank me afterwards. It is very hard to appreciate how rotten you will feel and how powerless it makes you feel when you have to accept care.
Thanks for this.
I phoned the supervisor of the care floor who understood precisely as you said. Feeling a bit deceptive, but surprising me that it's not bothering me. Sense of relief overcomes it.
Phew, glad to hear that, Noprofit. The worst part about learning this stuff is that just when you think you have it mastered, a new test is put in place and you have another learning curve. Glad to hear you are relieved. Your dad isn't enjoying all this any more than you are.
I went on a three day dementia course at work about five years ago. There was a lot of discussion about how you should respond if your patient/relative is in the middle of a story that’s obviously delusional. One school of thought is to go along with their version of reality, but that didn’t seem right to many of us. The course leader’s view was that you should respond to the feelings expressed in the delusion rather than the facts, and while drawing those out, link gradually back to real events.
I wasn’t sure how this would work, but tried it out with my dad a couple of months later. I went to visit him in the nursing home and he was bothered because he thought there was a cliff edge near where I was sitting and he kept getting distracted in case I fell over. (He had had two strokes, had severe visual loss with occasional hallucinations, and mild vascular dementia.) The conversation went something like this: Mind the cliff. You’re right by the cliff, don’t fall over.
A: You can see a cliff? You’re next to it, don’t fall over.
A: Don’t worry, I’ll keep my chair still and it will be fine. [Pause.] Maybe you’re remembering a cliff from a while ago. Do you remember when we used to go to the cliff at Penarth? I don’t know.
A: Sometimes we went there on Saturdays. You and Mum and me and T. There was a long path by the cliff. There was a fence so we couldn’t fall over. By the sea.
A: That’s right, by the sea. We used to walk on the path by the cliff. Lots of people took their dogs for walks there. T used to say hello to the dogs.
A: Yes, he did. And then we went to the cafe and you and Mum had tea, and T and I had hot chocolate if it was cold. Shall I see if it’s time for your cup of tea yet?
This sort of conversation seemed to work all right unless he’d got properly agitated. It didn’t feel like a good idea to go along with the idea of a cliff in his room, but it didn’t work to contradict him either.
The faces in the above post are errors by the way! It was meant to be D for Dad, followed by a colon, but recent texting convention has autocorrected this to faces!
Aravis, I thought the faces were quite interesting there! Your advice sounds great. It's difficult to remember to do but certainly much better than trying to correct someone. I'm used to the idea of reflecting back and finding some way to agree with people say things like that. Lucky you that you know the rest of the story or at least parts of it. I have to take stabs at it until we make some kind of connection we can agree on.
And for Mrs. S., why are you trying to make her do what she clearly does not want to do?
Lily Pad, I didn't make myself clear. I don't mind whether she takes part or not; what I can't go along with is this idea that she is being deliberately excluded from things. Would you feel that it was okay for me to agree with her assertion that everyone else was having fun - and having more fun because she wasn't part of it?
The Dowager isn't like Jengie's Mum in that she can be easily distracted, either - she likes to hang on to a grudge for a good long while (maybe she's alike in that she keeps changing her ground, though!)
Piglet, thanks for that suggestion. I don't know the Dowager's new GP, but I have a friend who is devotedly caring for a wife with dementia - I should probably talk to him.
Thanks all - and NP, a bit of deception seems to me well worthwhile in a good cause.
No, no, of course not. I just don't think you can get the full picture from a phone call and it is likely better to just let her have it as a grudge and not try to talk her out of it. Surely if it is true, the staff will be aware and will make changes to fix it and if it is not true then she will tell them and they will do whatever needs to be done. I'd just change the subject and get her on to other topics. So a, "Gee mom, that does sound terrible, oh well, their loss. Now, I was hoping you could help me decide on what colour of bedroom curtains I should go looking for. What do you think?" If for some reason you believe that it is true, by all means contact the place and discuss it with a manager. You'll never talk your mother out of it in any meaningful way and you certainly won't without the help of the staff. I totally do not mean to sound harsh here or prescriptive. I just think so many times we beat ourselves up over things that we have no control over and changing an opinion on something like that is one of these things.
My dad . . . was bothered because he thought there was a cliff edge near where I was sitting and he kept getting distracted in case I fell over. . . . Maybe [he was] remembering a cliff from a while ago. . . . Sometimes we went there on Saturdays.
Would work if the memory was pleasant. Wouldn't have worked with my mother, who refused to let the caregivers bathe her because she was afraid she'd drown. Unfortunately as a girl she was a victim of a childhood prank where she almost did drown. Wouldn't have done to remind her of that.
I haven't tried this but I've heard suggested a sort of grounding mindfulness. Just staring out loud any sensual experiences s/he would also be experiencing in that moment in a non reactive, matter of fact, observational way "I feel the hardness of the chair. The sun is warm on
My neck. I hear children laughing and cars honking..."
You might try saying, "you sound lonely" or similar when she moans about being left out. Not agreeing with the facts she's given you, but reflecting the feelings. Then keep on that way (ie "you must be very frustrated" & etc.
Cliffdweller - thanks, I might try that when I visit my brother with Parkinson's later this year. I know that in the past I have been able to "jolly him out" of an attitude, which I felt uncomfortable with as it felt a bit false, but that approach of commenting on sensations he may be aware of may be more effective in connecting with him.
I went on a three day dementia course at work about five years ago. There was a lot of discussion about how you should respond if your patient/relative is in the middle of a story that’s obviously delusional. One school of thought is to go along with their version of reality, but that didn’t seem right to many of us. The course leader’s view was that you should respond to the feelings expressed in the delusion rather than the facts, and while drawing those out, link gradually back to real events. This paragraph is from Aravis. (edited by Lothlorien, AS Host
Thanks for this Aravis, I'll try that next time. My husband and I have been having conversations about how to deal with mum's wilder assertions. Husband is all for stating that these things aren't happening in as blunt a way as possible (he'd good at doing that). I've tried logic, maybe I was going a step too far with Occam's razor, but I thought 'How can they get in when they don't have keys?' might work. Mum's close friend just sympathises tells her its terrible and she should call the police. Brother just tells mum she's better than the sort of person that makes wild assertions about people based on prejudice and tries to change the subject. None of these approaches have helped, though taking my brother's approach does mean the subject is dropped for a while. My husband and my approaches just make her cross and friends just confirms how terrible the neighbours are.
Mum talked to the owner of the flat after the management meeting on Tuesday. She said he just listened, but she phoned me yesterday to say she'd just seen him going into the next door flat. I'm not sure if that was true or not. I would be extremely cross if the people felt they had to leave due to mum's accusations.
Mrs S - I can see that that phone call was frustrating. I think saying something along the line Lily Pad suggests would probably make you both happier.
No Prophet - I hope your dad's op goes well. I think a little bit of extra help is good. If he complains you can emphasise its just temporary, even if you think it might end up having to be permanent.
I've had a friend whose a nun stay last night. She seems to be dealing with the equivelent of about ten elderly parents at present. One of the consequences of the lack of voccations to her order
Oops - missed the edit window. Only the first paragraph is Aravis's quote. Sarasa, I have added a note to this effect to your original post. And a carriage return so it is easy to see where your post starts. Lothlorien, AS host
I used to live on Mum’s planet - it worked really well. But I was lucky, her planet was a happy and pleasant place. So whatever she said eg “I made a super potato pie earlier, we’ll have it for tea” I’d agree with and ask questions about it. She’d have forgotten five minutes later anyway. Accuracy or truth about anything wasn’t required.
But, if the person’s planet isn’t such an easy going or happy place it must be hard to know how far down the road you go towards living on it or where to draw the line
I should add that the conversation I quoted was carried out in the warm glow of having had time off work to attend an interesting course, and seeing Dad on a day when he was in a fairly good mood, though confused. We continued to have many less positive conversations at times. But that one was still a nice example of how the technique worked with delusions.
When my very difficult mother was alive, I memorised several non-committal phrases that allowed me to commiserate with her angst without agreeing to the specifics. I stole one from The Wizard of Oz: " What a world, what a world." Another of my favorites was "You never know what to think these days."
Thank you sabine. Your comments have been very helpful, all, so thank you to everyone.
I spoke to the Dowager this morning and we were both on our best behaviour. Having had your input allowed me to steer away from trying to solve every problem, rather to sound sympathetic without being overly encouraging of self-pity.
Anotherday, I've thought about this a lot and it's my belief that it's the lack of choice that is so hurtful. If only people could engage with the idea of care before it became an absolute necessity, when they were still able to look sensibly at choosing a home, and to take some positivity in with them, I''m sure life could be better.
As it is, they don't go willingly or when they still have their wits about them, so how are they going to settle in happily? So many problems detailed on this thread have been caused by reluctance to admit to needing help (a cleaner, a walking-stick, whatever) or that it might be better not to drive oneself but take a taxi, or whatever.
And yet ... it's probably by being independent, obstinate and bl**dy-minded that they got to live long enough for all this to matter to their beleaguered children. Solve that and we'd be half-way there.
I agree Mrs S. It is that it is the lack of choice that is the hard thing for so many elderly people. We bumped into a friend the same age as us at the weekend. He's been talking for years about moving to a retrement community and it is finally happening. He is very fit and healthy. We met him outside the hardware store just about to cycle off with three tins of paint in his backpack to do up the house he is selling.
Anotherday - I hope your father settles quickly and you can come to terms with the changes in your father and your relationship with him. This is the thing I find hardest. My mother often sounds like a confused child on the phone, when she isn't being a bolshy toddler, and she was always so decisive and funny before her brain started giving up on her.
Amen to that, Sarasa - it's this reversal of roles, isn't it? Having to tell your mother not to eat with her fingers, or to do up her coat because it's cold - I can do that with The Intrepid Grandson, but to my own mother? Especially when it is her voice I hear ringing in my ears...
The son of her sainted next-door neighbour, who was taught at junior school by the Dowager, went to visit her this morning, may blessings fall upon him. He commented that she was 'a bit forgetful', but as articulate as ever. With me, she struggles to get her point across Still, hopefully she enjoyed being told what a brilliant teacher she was
Mrs. S., my way around that has always been to say things like, "Now, when I was a girl, you used to tell me to button up my coat right to the top when it was cold out like it is today. We'd both better follow your advice!" or "Who knew that one day I would be telling you to button up your coat. It's a good thing you taught me well when I was a little girl." It takes the pressure off you telling her what to do yet still does the reminding. And if she doesn't want to do it up, then just let it pass. Somehow the children need to create new ways of thinking and speaking in order to cope with the forgetfulness. Yesterday at lunch I listened to several stories for the third or fourth time and the other person at the table knew that I was and I just listened and commented as if it was the first time. That's good enough for me. My dad is just starting to have significant memory loss and I hope I can keep my sense of humour and just take it as another life stage.
Word finding difficulty seems to be a progressive problem for many. So does living a number of years in the past.
Waiting today for the eye surgery with my father. I told him about the backup plan re extra care because he will he blind for a period after. And just as I was doing so one of my sisters text messaged me and I was able to say it is a decision of all. Which was divine intervention, serendipitous and happy coincidence, but generally good. He actually chuckled that we were ganging up on him. Which I guess we are.
Lol - good for you, No Profit. You are sort of ganging up on him but in a loving way and in the only way you know how. You are also protecting yourself from the pain that would come, both in a practical sense and in an emotional worry sense, if he were to be left and fall or break something or whatever. Navigating the path can be fun if you are outside of it but agony when it is your dad and he can't find a way to make it easier on you. All the best for the eye surgery and follow-up.
Ganging up in a positive way is good No Prophet. I hope the operation goes well and that the extra help, if needed, meets with your father's approval.
My mother's next door neighbours phoned this afternoon. Mum had been and accused them of coming in to her flat and moving her sofa. When I spoke to her later she was so horrible about them and also said they've taken various other things. She is so worked up about it all that I'm afraid she will go and do something really silly. The only positive thing about the phone call was that mum is still in favour of a cleaner. Now I've got to sort soemthing out, but at least its a step towards her accepting more help.
I realised that a lot of my phone calls home involved catching up on family news, such as my aunt's recovery from her broken hip, but that I wasn't getting much sense of what Dad was doing day-to-day. So I've been making a point of asking what he has done, and the answer is clearly, very little.
Tonight when I phoned, Dad had already gone to bed so I spoke only to my mother. I said that I thought Dad should be doing more for himself, and Mum said that she does everything for him because he is losing his short term memory. This was news to me, though I realise that when I visit I see them both together and I might not have realised if Mum was covering up.
Also, Mum has always done everything for him in the house, it's just that it used to be balanced by Dad doing stuff outside.
How do I tell if Dad's short term memory is going? If it is, would doing more help?
Their daily routine, for at least the last decade is:
7am Mum gets up, drives to the shop for the daily paper , milk etc, comes home, sets the breakfast table, makes breakfast, including setting out Dad's pills and pouring his cereal into the bowl. (He spreads his own marmalade on his toast.)
8am. Dad gets up, has breakfast, and takes the paper through to his armchair.
8.30 am, Mum clears the table, washes up, puts yesterday's newspaper into the recycling, puts the washing machine on.
10a.m Mum makes coffee and they do the crossword.
10.45 am This is the point at which Dad used to Do Something, but now he stays in his armchair while Mum clears up the coffee stuff, hangs out the washing, prepares lunch, sets the table and serves lunch.
After lunch, Dad has a nap in his armchair, while Mum does the housework, dishes, dusting, wiping down, dry washing away, baking etc.
It's not healthy and it's not mentally stimulating for Dad. Mum is adamant that it's up to her to look after Dad, but he just seems to be becoming less and less of the Dad I know. And I can't work out how much is cause and how much is effect.
That sounds like a synergy. Where they feed off each other?
Priest told me that, perhaps riffing on Easter(??), that we all get our times of passion. I failed to ask if it is us caregivers and supporters to our parents who are having a passion or our aging parents. Probably both? Within the meanings of "passion" which readily come to my mind: suffering and strong emotions. I like priests for their provocative ideas. And organists for their emotional comfort- fugue something just now moving my mind to intricate webs of interconnectedness. Something about the natural order of things in the world of rocks and snow and animals and plants and sky. (Forgive the fatigued digression about a fugue)
May I say that you folks saved my bacon and his today, even if he didn't want to eat it. (Home after 15 hours). Many thanks.
That all sounds deeply unhealthy, NEQ. As things stand he doesn't need a short-term memory, does he, because his routine is changeless and completely set into a framework of your mother's efforts. I wish I had helpful suggestions to make, but other than suggesting that at the very least he and your Mum go for a walk rather than his nap, I can't think of any.
I should add that I have given up on helpful suggestions for my Mum, who at 93 and a half ('is that how old I am?') just doesn't DO any of them. Her room is full of TV, radio, books, crossword books, colouring books, photo albums - but what she DOES is sit in the lounge and doze (or complain). Can you tell it is my day to go and see her?
Sorry, NEQ, but I think your mother will have to make changes also if anything is going to change.
No Prophet - I hope your father had a restful night and that the operation ahs been a success. Also if he does need to move to the more assisted care unit the move is as smooth as possible.
NEQ - It sounds like your mother has probably been covering up for your father for a while. Is there anyone else who lives nearby (siblings, relations, friends, neighbours) that you can ask for their take on the situation?
Mrs S - I'm sure I've said this before but has your mother had her eyes checked recently? It might be that she just can't see well enough to do crosswords etc anymore. Also thinking about the visit from your ex-neighbours son. Is there anything that your mother is/was interested in that you can discuss. My mother-in-law is very vague and confused most of the time, but given the opportunity the English lecturer snaps right back in. Recently I've had her giving me really good critique on my writing and ask her anything about Dickens and you get a fascinating lecture.
I’m really struggling. My dad was a lecturer. He was engaging engaged and happy. His flat losing cognitive fuction and physical fuction. There is only so much I can get my daughter who is loving and accepting -and has a disability herself to engage. (Ironically the same gene presents differently). Best is a walk as there is something to do. A game(although these are getting harder). Or reading something which connects information stored (hit and miss) I hate this. I’m grieving for the father I had, the fact I am aware of the natural progression of the illness.
Well, yesterday's visit was just about as bad as I had expected. The Dowager is convinced that 'they' are all plotting against her, excluding her from things, keeping her from her friends (though at other times she has no friends). She tells me of someone 'passing herself off' as someone else, but 'she forgot to disguise her ankles'. And there was a different hairdresser this week 'but she (the hairdresser) denied it'. I tried Lily Pad's suggestion of 'you don't know why people do these things' but she could see in my face that I thought it was nonsense and pleaded with me to believe her
I talked to the carers as much as I could, and they say that they try to get her to engage, and sometimes she will come and join in, but then she gets cross and stomps out; they try to walk a line between dragging her into things she doesn't want to do, and leaving her out. The young carer who does her nails is very sweet, but when I said as much the Dowager's response was 'she's strong on the inside, but not on the outside'.
We did have some good moments, mainly talking about the Intrepid Grandson and how bright and intelligent he is, but then that brought back memories of my childhood accident (for which she still feels responsible)
Anyway my SiL and nephew rolled up just as I was leaving, so I'll be interested to hear how they got on!
Mrs. S, glad to have made it home through the downpour
This may sound stupid but have you tried putting your father in a situation where he has to make a decision? It need not be very difficult one, perhaps where he'd like to go for lunch to celebrate something. The harder he struggles to do that the more chance there is that he is struggling with short-term memory.
My friend with Alzheimers and dementia can no longer cope with a decision of lunch at the club. He hangs back and dithers and listens to what others will have. When it gets to his turn, he orders what the last person in his group tohim ordered.
@The Intrepid Mrs S your mother sounds as if she's struggling to make friends in her new home. Maybe it feels to her as if everyone else is already in cliques that she can't break into, a bit like a new child into school part way through a year or moving into the area. It's really difficult to make friends in those situations and feel as if you belong. Maybe when she does join a group there's an in joke or something that makes her feel as if she isn't included. If she no longer has the self-confidence or self-awareness to recognise these feelings for what they are could it be she externalises them to be the others excluding her?
The usual way to help someone in this situation is to help them make friends with one person who is integrated, or to make friends with other newcomers - and to take part with a friend who will support them.
Oh dear. Just had a message from my sister in law. She'd just been phoned from someone in my mother's block of flats to voice concerns about my mum. Apparently not only are the stealing accusations well known among all the other residents but my mum stopped this person in the street the other day as she couldn't find the chemists, but didn't recognise who she was. Worrying on lots of counts.
Sarasa <votive> that's horribly familiar. As Lily Pad says, at least the neighbours are concerned, and if everyone knows about the stealing accusations then nobody believes them.
NEQ - Holidays haven't been mentioned by either my brother or my mother ever since mum insisted she wanted to move because of the stealing neighbours. As well as message from my s-i-l I got a sententious one from my brother about us all doing the best by mum. It's taken him a couple of years to realise that I wasn't exaggerating when I kept him in the loop about how mum was coping, and of course things have got worse very quickly lately.
Lily Pad and Mrs S - The person who contacted my s-i-l seemed to be acting as a spokewoman for other residents. Apparently she said what a close knit community it was and that they all look out for one another. She also emphasised how much they like my mother. I know about the looking out for each other, as when mum first went there ten years ago she sorted out quite a lot of things for other confused residents who have now either died or moved into sheltered accommodation. She just doesn't accept that it is her turn for help now.
I'm meeting her at her local resource cnetre for blind people this morning to look at equipment and then doing a bit of shopping before taking her home. It will be interesting to see how she copes. I've also contacted several agenices about getting help in. Due to my hearing loss I've emailed rather than phoned them and of course none of them have replied. I'm going to have to crank my phone up and brave talking to them in person, something I hate as I spend most of the time asking people to repeat stuff.
This may sound stupid but have you tried putting your father in a situation where he has to make a decision? It need not be very difficult one, perhaps where he'd like to go for lunch to celebrate something. The harder he struggles to do that the more chance there is that he is struggling with short-term memory.
Jengie
I'd be astonished if Dad struggled with something like that. I've been in the car with him driving in the last month and I have no qualms about his ability to drive round familiar roads.
When I phoned last night Mum was in the bath and I had a long and cheerful chat with Dad. At Christmas Dad asked me to walk round the block with my Fitbit to measure it (0.6 miles). Yesterday he said that he wanted me to walk a different route to work out what he'd have to do to walk a mile as, now that the weather is improving, he wants to see if he can manage that. So that was positive. I think he is struggling with the knowledge that up to late 2014, he would e.g. walk to the barber for a hair cut (over 3 miles return) and think nothing of it. He was very fit for his age then and took pride in it. I have photos of Dad and I larking around on gym equipment in Jan 2013, and he was fitter than I was at that time (I claimed he was just more accustomed to using the equipment!)
If I'm getting a pang remembering Dad grinning as he outpaced me then, how much harder must it be for him?
NEQ - what stopped him going to the gym? Is there any reason why he couldn't still go? or take up something else, like swimming?
Have you seen the challenges to walk say 500 miles in a year (or 1000 - which is 2 and a bit miles a day ...) There are ways to log this and get involved on Facebook. Or there's the Ramblers site that allows you to log walks - or depending on the local area he could possibly check the local footpaths and report problems
Comments
Update here is that my father is going for another eye surgery in the functioning eye (other one is blind). Pressure not controlled with the max of the drops and pills (glaucoma). The problem is that the local anaesthetic will make him fully blind for 3-20 hours. He's in assisted independent living (they ensure safety and make them supper) He has access to the supervised floor on a temporary basis but refuses it. Warns me off re it.
Shall I go behind his back and talk to the supervisor of the supervised floor as a contingency plan or as actual? I fear I get him back to his apartment/flat that he sits until he has to use toilet and falls, and I have to go back after work to call ambulance. He's insistent about it. I am on the verge of losing the hair I still have. I think I have to defy him. Dunno dunno.
Jengie
And for Mrs. S., why are you trying to make her do what she clearly does not want to do? Put a big sign up beside the phone with a few conversation starters and just let things like not partaking in the feast go right on by. Change the subject. Of course, after your conversation, you can always call the home and ask what is going on and so forth but I'd just go with how she feels and let her figure it out. She shouldn't have to do anything she doesn't want to at her age unless it is crucial to life.
Thanks for this.
I phoned the supervisor of the care floor who understood precisely as you said. Feeling a bit deceptive, but surprising me that it's not bothering me. Sense of relief overcomes it.
I wasn’t sure how this would work, but tried it out with my dad a couple of months later. I went to visit him in the nursing home and he was bothered because he thought there was a cliff edge near where I was sitting and he kept getting distracted in case I fell over. (He had had two strokes, had severe visual loss with occasional hallucinations, and mild vascular dementia.) The conversation went something like this:
A: You can see a cliff?
A: Don’t worry, I’ll keep my chair still and it will be fine. [Pause.] Maybe you’re remembering a cliff from a while ago. Do you remember when we used to go to the cliff at Penarth?
A: Sometimes we went there on Saturdays. You and Mum and me and T. There was a long path by the cliff. There was a fence so we couldn’t fall over.
A: That’s right, by the sea. We used to walk on the path by the cliff. Lots of people took their dogs for walks there.
A: Yes, he did. And then we went to the cafe and you and Mum had tea, and T and I had hot chocolate if it was cold. Shall I see if it’s time for your cup of tea yet?
This sort of conversation seemed to work all right unless he’d got properly agitated. It didn’t feel like a good idea to go along with the idea of a cliff in his room, but it didn’t work to contradict him either.
Lily Pad, I didn't make myself clear. I don't mind whether she takes part or not; what I can't go along with is this idea that she is being deliberately excluded from things. Would you feel that it was okay for me to agree with her assertion that everyone else was having fun - and having more fun because she wasn't part of it?
The Dowager isn't like Jengie's Mum in that she can be easily distracted, either - she likes to hang on to a grudge for a good long while (maybe she's alike in that she keeps changing her ground, though!)
Piglet, thanks for that suggestion. I don't know the Dowager's new GP, but I have a friend who is devotedly caring for a wife with dementia - I should probably talk to him.
Thanks all - and NP, a bit of deception seems to me well worthwhile in a good cause.
Mrs. S, ready to try again tomorrow
My neck. I hear children laughing and cars honking..."
Huia
But, if the person’s planet isn’t such an easy going or happy place it must be hard to know how far down the road you go towards living on it or where to draw the line
I spoke to the Dowager this morning and we were both on our best behaviour. Having had your input allowed me to steer away from trying to solve every problem, rather to sound sympathetic without being overly encouraging of self-pity.
Mrs. S, (not) looking forward to Wednesday
Thanks. Stupid gene. One single one.
As it is, they don't go willingly or when they still have their wits about them, so how are they going to settle in happily? So many problems detailed on this thread have been caused by reluctance to admit to needing help (a cleaner, a walking-stick, whatever) or that it might be better not to drive oneself but take a taxi, or whatever.
And yet ... it's probably by being independent, obstinate and bl**dy-minded that they got to live long enough for all this to matter to their beleaguered children. Solve that and we'd be half-way there.
The Puzzled Mrs. S
Anotherday - I hope your father settles quickly and you can come to terms with the changes in your father and your relationship with him. This is the thing I find hardest. My mother often sounds like a confused child on the phone, when she isn't being a bolshy toddler, and she was always so decisive and funny before her brain started giving up on her.
The son of her sainted next-door neighbour, who was taught at junior school by the Dowager, went to visit her this morning, may blessings fall upon him. He commented that she was 'a bit forgetful', but as articulate as ever. With me, she struggles to get her point across
Mrs. S, offering heartfelt support all round
Waiting today for the eye surgery with my father. I told him about the backup plan re extra care because he will he blind for a period after. And just as I was doing so one of my sisters text messaged me and I was able to say it is a decision of all. Which was divine intervention, serendipitous and happy coincidence, but generally good. He actually chuckled that we were ganging up on him. Which I guess we are.
Ain't that the truth ...
My mother's next door neighbours phoned this afternoon. Mum had been and accused them of coming in to her flat and moving her sofa. When I spoke to her later she was so horrible about them and also said they've taken various other things. She is so worked up about it all that I'm afraid she will go and do something really silly. The only positive thing about the phone call was that mum is still in favour of a cleaner. Now I've got to sort soemthing out, but at least its a step towards her accepting more help.
Tonight when I phoned, Dad had already gone to bed so I spoke only to my mother. I said that I thought Dad should be doing more for himself, and Mum said that she does everything for him because he is losing his short term memory. This was news to me, though I realise that when I visit I see them both together and I might not have realised if Mum was covering up.
Also, Mum has always done everything for him in the house, it's just that it used to be balanced by Dad doing stuff outside.
How do I tell if Dad's short term memory is going? If it is, would doing more help?
Their daily routine, for at least the last decade is:
7am Mum gets up, drives to the shop for the daily paper , milk etc, comes home, sets the breakfast table, makes breakfast, including setting out Dad's pills and pouring his cereal into the bowl. (He spreads his own marmalade on his toast.)
8am. Dad gets up, has breakfast, and takes the paper through to his armchair.
8.30 am, Mum clears the table, washes up, puts yesterday's newspaper into the recycling, puts the washing machine on.
10a.m Mum makes coffee and they do the crossword.
10.45 am This is the point at which Dad used to Do Something, but now he stays in his armchair while Mum clears up the coffee stuff, hangs out the washing, prepares lunch, sets the table and serves lunch.
After lunch, Dad has a nap in his armchair, while Mum does the housework, dishes, dusting, wiping down, dry washing away, baking etc.
It's not healthy and it's not mentally stimulating for Dad. Mum is adamant that it's up to her to look after Dad, but he just seems to be becoming less and less of the Dad I know. And I can't work out how much is cause and how much is effect.
Priest told me that, perhaps riffing on Easter(??), that we all get our times of passion. I failed to ask if it is us caregivers and supporters to our parents who are having a passion or our aging parents. Probably both? Within the meanings of "passion" which readily come to my mind: suffering and strong emotions. I like priests for their provocative ideas. And organists for their emotional comfort- fugue something just now moving my mind to intricate webs of interconnectedness. Something about the natural order of things in the world of rocks and snow and animals and plants and sky. (Forgive the fatigued digression about a fugue)
May I say that you folks saved my bacon and his today, even if he didn't want to eat it. (Home after 15 hours). Many thanks.
I should add that I have given up on helpful suggestions for my Mum, who at 93 and a half ('is that how old I am?') just doesn't DO any of them. Her room is full of TV, radio, books, crossword books, colouring books, photo albums - but what she DOES is sit in the lounge and doze (or complain). Can you tell it is my day to go and see her?
Sorry, NEQ, but I think your mother will have to make changes also if anything is going to change.
Mrs. S, fresh out of bright ideas
NEQ - It sounds like your mother has probably been covering up for your father for a while. Is there anyone else who lives nearby (siblings, relations, friends, neighbours) that you can ask for their take on the situation?
Mrs S - I'm sure I've said this before but has your mother had her eyes checked recently? It might be that she just can't see well enough to do crosswords etc anymore. Also thinking about the visit from your ex-neighbours son. Is there anything that your mother is/was interested in that you can discuss. My mother-in-law is very vague and confused most of the time, but given the opportunity the English lecturer snaps right back in. Recently I've had her giving me really good critique on my writing and ask her anything about Dickens and you get a fascinating lecture.
I talked to the carers as much as I could, and they say that they try to get her to engage, and sometimes she will come and join in, but then she gets cross and stomps out; they try to walk a line between dragging her into things she doesn't want to do, and leaving her out. The young carer who does her nails is very sweet, but when I said as much the Dowager's response was 'she's strong on the inside, but not on the outside'.
We did have some good moments, mainly talking about the Intrepid Grandson and how bright and intelligent he is, but then that brought back memories of my childhood accident (for which she still feels responsible)
Anyway my SiL and nephew rolled up just as I was leaving, so I'll be interested to hear how they got on!
Mrs. S, glad to have made it home through the downpour
This may sound stupid but have you tried putting your father in a situation where he has to make a decision? It need not be very difficult one, perhaps where he'd like to go for lunch to celebrate something. The harder he struggles to do that the more chance there is that he is struggling with short-term memory.
Jengie
The usual way to help someone in this situation is to help them make friends with one person who is integrated, or to make friends with other newcomers - and to take part with a friend who will support them.
Lily Pad and Mrs S - The person who contacted my s-i-l seemed to be acting as a spokewoman for other residents. Apparently she said what a close knit community it was and that they all look out for one another. She also emphasised how much they like my mother. I know about the looking out for each other, as when mum first went there ten years ago she sorted out quite a lot of things for other confused residents who have now either died or moved into sheltered accommodation. She just doesn't accept that it is her turn for help now.
I'm meeting her at her local resource cnetre for blind people this morning to look at equipment and then doing a bit of shopping before taking her home. It will be interesting to see how she copes. I've also contacted several agenices about getting help in. Due to my hearing loss I've emailed rather than phoned them and of course none of them have replied. I'm going to have to crank my phone up and brave talking to them in person, something I hate as I spend most of the time asking people to repeat stuff.
I'd be astonished if Dad struggled with something like that. I've been in the car with him driving in the last month and I have no qualms about his ability to drive round familiar roads.
When I phoned last night Mum was in the bath and I had a long and cheerful chat with Dad. At Christmas Dad asked me to walk round the block with my Fitbit to measure it (0.6 miles). Yesterday he said that he wanted me to walk a different route to work out what he'd have to do to walk a mile as, now that the weather is improving, he wants to see if he can manage that. So that was positive. I think he is struggling with the knowledge that up to late 2014, he would e.g. walk to the barber for a hair cut (over 3 miles return) and think nothing of it. He was very fit for his age then and took pride in it. I have photos of Dad and I larking around on gym equipment in Jan 2013, and he was fitter than I was at that time (I claimed he was just more accustomed to using the equipment!)
If I'm getting a pang remembering Dad grinning as he outpaced me then, how much harder must it be for him?
Have you seen the challenges to walk say 500 miles in a year (or 1000 - which is 2 and a bit miles a day ...) There are ways to log this and get involved on Facebook. Or there's the Ramblers site that allows you to log walks - or depending on the local area he could possibly check the local footpaths and report problems