Elderly parents appliance issues.......

CH27

phoebe1989seb wrote: »

Thank you all so much for your kind and supportive posts It is so touching for complete strangers to take an interest and be so helpful!

I know they do get attendance allowance which my dad did think they wouldn't be entitled to because of their financial position, but as far as I'm aware they have never been offered the opportunity for any respite care. I'm sure even if they were, it would be a struggle to get my mum to go, but my dad really could do with a break.

Last year when we were living farther away and she wasn't quite so bad we did have her to stay for a few days to give him a rest, but after only three days she became so distraught at being separated from him that we had to take her home once DH got home in the evening. This wouldn't be so bad if we had been living closer but it's not possible to just drop everything straight away to take her home with DH working etc. Now even when we've offered to have her here for the day (when the weather was better and we could spend time sitting in the garden with things to distract her) she won't come without my dad so it ends up being less of a break for him than we had intended. Not only that, but because of her illness she has all sorts of phobias and fears - flies, rain and perfume aromas being the most recent.

I will try to get something arranged regarding some respite care though - it's just so difficult to persuade them that these things are for the best.......

In the meantime fortunately the gas engineer and the guy coming to 'fix' the oven are trusted tradesmen that have been employed by the family for many years, so hopefully they won't try to rip them off!

I just hope this is a 'phase' which will come to an end before some disaster happens as I'd never forgive myself, although I have a nasty feeling things will only get worse

Thanks again to you all

Oh and Old Joe - thank you especially - you remind me of my husband's dad - he was 80 this year but still goes hiking and camping on his own and is on facebook too x

Unfortunately it will get worse.
You need to put some measures in place to make sure that they are safe.
Contact their GP & Social Services & see what is available?

Could you go & stay with them for a few days to get a true icture of what is hapening?

Could you do an internet shop once a week to be delivered to them?

lostinrates

In the short term, while you persue the advice given by posters above, as regards relying on neighbours for shopping, could you order a regular online shop for them, and call in the morning it is to be delivered, just to remind them?

Also, as regards getting to the station more regularly, I know I'd run someone from my Wiltshire village to the station, and we have a ''help your neighbour'' scheme in this parish to facilitate just that sort of thing....is there anything like that near you that you know of?

margaretclare

I sympathise. While I'm not quite Old Joe's age, I'm getting there, and fortunately DH and I still have our marbles.

It's worth pointing out that Attendance Allowance is non-means-testable and non-taxable, therefore it's a very useful payment to have. Also it comes at 2 levels, daytime only, or day-and-night (the higher rate).

My washing-machine cannot be opened while in mid-cycle so flooding the floor won't happen, but if I started fiddling with the control, putting it back to the beginning, I could say it won't work properly. There's a safety door-lock, once the cycle has ended there's a delay until the lock comes off and the door can be opened.

Not sure why anyone needs a TV set in the bedroom, but that's just me. For someone who's already confused - Alzheimer's - one thing you get with this condition is day and night become merged, and flashing lights and coloured images would be the last thing you need. However, you can't tell them.

LEJC

Ive purposely not read any of the other responses but I have read in detail your initial post I suspect I will just echo what others have said but...Ive been where you are and know how difficult it is...
I too am in my early 40s with a DH and teenage son who regularly and selflessly will support me during my "tribulations" as a result of the family situation we find ourselves in...

My mother and her husband are 82 and 84 and I live an hour away...my sister two and between us we have been through everything you are going through even to the diagnosis of dementia for my mother and the failing health of her husband...

On a practical note we involved social services in order to arrange a carer to help with chores and also to provide a regular visit to the house...this helped so much...
We had examples of them trying to change the tv channel with the cordless phone therefore assuming the tv to be broken...and also not disconnecting the call on the phone therefore rendering it impossible to make a call to them to check on them as the phone appeared constantly engaged..
We had to stick plastic over the front of the freezer to block out the lights on it as the freezer would suddenly defrost...it turned out that every night they were turning it off to save electricity...

We now have a carer who goes in twice a day to help with meal prep and also chores like washing the clothes and this for us has been a great peace of mind just to know that someone checks on them daily and can call you if necessary...its so hard as you do feel so helplees being a distance away but it also means that when you do visit..and I visit at least once a week that the time you spend with them can be of more quality and less of a worry for you...

We found the issue of shopping to be very difficult...its very easy to say online internet and have it delivered..but that only really works if they remember to put it away...yes I did it once and then arrived to visit 2 days later to find all the shopping left neatly in the hallway where the delivery driver had left it..not much of a problem for tinned items but the fresh meat was anything but!
If there is a neighbour who would be willing to devote a few hours to helping then thats a positive thing but again we found that it takes a very special neighbour to do it all the time as they will find that they become more and more relied upon.

As part of my weekly visit I now shop for them but it is something that carers can do if required

it also wasnt easy integrating a carer into their lives...there was resentment in the beginning especially from my mother who saw it as a great intrusion into her life,her mood swings and general reluctance were hard to deal with at first ..but over time I'm happy to say that she herself now adores her carers and looks forward to the visits..and has come to look on them as her friends...

Please look into attendance allowance...its not a means tested payment and if one or both qualify then it will go someway to help with payments to help them...Initally please dont feel bad about involving social services...in my experience they do respect the family wishes of wanting the relatives to remain together in their own home for as long as possible...for us it has meant that my mum and her husband have ticked along with the help of carers for 2 years so for us it works reasonably well...the future is uncertain as we need to take each hiccup as it comes but ultimately I believe that they remain happy in their own house..

Sadly these types of illness dont pass...everyone needs to adapt to them and at times it can be heartbreaking and confusing for all concerned...the person with the illness feels helpless but at times its exactly the same feeling for the family too...

There will be a complete shift in your relatonship...which will be difficult...suddenly you go from being the child that relies on a parent to the one that has to help and assist them...and for me that was an incredibly difficult transition to make...

please also dont under estimate the effect your mothers illness is going to have on you father...he is advancing in years and will no doubt be struggling to come to terms with the physcal and mental changes in your mothers health...it is incredibly difficult to watch the person you love fade away....and to get him some respite, or something else to do for a few hours a week however small is not an admission of failure...
We used to get my BIL to take my mothers husband for a lunchtime meal /drink and chat in the local pub once a week just to give him a bit of adult company and chat whilst my sister sat at home with Mum...

I do hope that you can arrange something in order to put your mind at rest a little....you really will feel a lot better for doing it...

Best of luck

phoebe1989seb

Thanks so much to everyone who has so selflessly posted with advice, support and kind words

Whilst it doesn't seem right to say so and I sincerely wish I was the only one going through this with their parent(s), it does help to know I'm not alone.............

So many of your experiences sound just like mine - burning towels under the grill, thinking the phone was the remote etc etc - thank you for sharing them as it has made me feel better

My parents do already get attendance allowance, although I'm not sure if it's day-time only or day & night-time......will look into this. Also will look into the social services providing a carer of some kind........I s'pose it's naive to expect it, but I had assumed that as my mum goes to see an alzheimers specialist (and has done for some time as her mum was a sufferer also so it was recommended), that this would have been suggested as a way forward to help my dad with the day-to-day coping, but I guess with anything like this if you don't ask, you don't get and if you don't ask they assume you don't need help

Regarding someone helping around the house - my parents' neighbours (similar age to us but with a 7 year old) have a cleaner themselves and offered to put in a word for my parents with her, but whilst my dad welcomed the idea, my mum wouldn't hear of it. At the moment she firmly believes she is still doing all the housework herself, when in actual fact if my dad doesn't encourage her to do even the tiniest bit of dusting with him, it won't get done at all. On the subject of their neighbours - they are very good, but cannot really be relied upon to do anything more than the occasional bit of shopping - for example last winter when it snowed and my parents couldn't get out to the local shops - as they have very busy lives and it wouldn't be fair to expect them to be under obligation to help out. Despite this, the neighbours were one reason given by my mum for why they were not prepared to move with us as the neighbours are 'so good and do everything' for them!

I have been to stay for a few days, although this was before things got quite so bad as they are at the moment - we intend to visit this weekend to do some chores in the garden for them before the bad weather sets in and we will endeavour to re-assess the situation then.

One of the problems we find is that they don't seem to trust us (they never liked DH and have always referred to him in derogatory terms) - in the summer when DH was doing some work on their house and they had to pop out, they locked him out with only access to an outside loo and on another occasion when a valuable item of jewellery went missing my dad accused us of stealing it even though we were 150 miles away when it went missing! Again this is a problem they frequently encounter as a result of my mum's condition - jewellery and more regularly everyday household items such as keys disappear all the time. They once 'lost' an expensive piece of crystal and almost accused a tradesman who had been in the house of taking it. Fortunately DH and I prevented this and about a year later it was found hidden away in a cupboard..........

I will also have a think about ordering their shopping for them online, but I do worry that as LEJC said, it will not get put away once delivered, but it's definitely worth considering.

Most worrying at the moment is the current frequency with which appliances etc are 'failing' - yesterday they had to go into town (by bus as they sold their car) to have a meal in a department store because of the cooker being out of action. Apparently when they got there however, the store no longer had a restaurant (again, I'm sure it was more likely that they couldn't find it as it's a very large store) so they went instead to the small coffee shop in M&S where they were only able to get a piece of cake and a drink - their 'dinner' for the day!

Whilst I realise that having them live with us would in itself be a nightmare, I truly wish we could have persuaded them to at least consider the 'annex' idea when we were moving as it would have given me peace of mind and my dad a far less stressful existence, but it's too late for that now.

Once again guys, huge thanks for your suggestions and (((hugs))) to you all, especially if you're going through the same thing with your parent(s)!

Phoebe xxx

Abbafan1972

You have my sympathies everybody.

My parents are only in their early 60's now, but I do dread when they get older and are a lot more forgetful etc.

They live only 5 minutes down the road (in the car). Even now I get the "this doesn't work anymore" when it's perfectly fine.

We went round at the weekend to do the 1st retune on the tv and was informed that the dvd player was no good and didn't work anymore. Hubby is very good with electrical things and wiring etc, but all it has suffered from was "attack of the duster" as I like to call it, Mom had been dusting and a cable had dropped out the back.

They are on holiday now for a week, so we will go round and do the 2nd retune for them when they get back.

They recently bought a Panasonic HD tv for the other room and a DVD player at the same time, this DVD player cost even more than a Blu ray player. If they had only come to us and asked for advice and we would have told them to get a blu ray instead, you can still play your dvd's on it, but my dad thought that you needed 2 separate players.

My Mom recently got a cat and bought a magnetic cat flap. A bit different from ours but the same concept. I had a look at it in the back door and spotted the mistake straight away, it had been put in back to front, so it's useless for stopping cats coming in and now my Mom's cat can't go out without the magnet, and she has a habit of losing collars! It can't be changed round now as it's been sealed in.

God help me if they ever get a computer. :eek:

You get the idea.

Mojisola

phoebe1989seb wrote: »

I guess with anything like this if you don't ask, you don't get and if you don't ask they assume you don't need help

This is so true! And be wary of Social Workers, etc, coming to house without you being there. There's a good chance your parents will give them a completely false picture of how well they're managing! My Mum also thinks she's still running the house and tells people how she's walked down to the shops to pick up bread and milk when she hasn't left the house without someone taking her in a car for about five years.

Regarding someone helping around the house - my parents' neighbours (similar age to us but with a 7 year old) have a cleaner themselves and offered to put in a word for my parents with her, but whilst my dad welcomed the idea, my mum wouldn't hear of it.

With Alzheimers, you have to be able to think laterally and find ways round their thinking. My Mum responds better to suggestions that we're doing things because Dad can't cope, rather than her. She was very resistant to having a cleaner but, for Dad's sake, we had to find a way round it. I found the book "Contented Dementia" by Oliver James very helpful in developing strategies.

One of the problems we find is that they don't seem to trust us (they never liked DH and have always referred to him in derogatory terms)

This will be a big problem. My parents trust me and rely on me but I still see professionals feeling the dilemma when I say my parents aren't coping and they say they can. It's very difficult for the professionals - am I a pushy daughter with my own agenda trying to get my parents to do things they don't want to do?

If the professionals get the feeling that your parents don't trust you and your OH, you will have an uphill struggle.

I get round this by using examples like your parents' trip to the department store - "I thought you said that x, y and z happened?" Usually Mum and Dad will agree and elaborate on it so that the GP/Social Worker/OT can see that I haven't made it up.

LEJC

I could have written that post Mojisola....

My mum wanted absolutely no help whatsoever...and it had to be introduced very slowly!....all credit though to social services they realised that if it wasnt a gradual process then it would be a complete waste of time and everyone would be banished from the house...myself included...

We started off by introducing the carer as a friend of mine who was going to pop in once a day to see how things were going...the first week they would sit with mum and have a cup of tea with her then gradually offer a piece of cake,maybe toast...then a sandwich ...it took several weeks to get up to a cooked meal but eventually they managed....the key to introducing anything is slowly....
same with the cleaning...the carer sat with mum and "accidently" dropped her biscuit on the floor...offering to clear it up and ending by hoovering the dining room....

Please speak to social services independantly about your concerns and then meet with them and your parents....it is a situation that they will be used to and as I said in my earlier post they do genuinely want to strive to keep couples housed together for as long as viable...

There will always be times when your mum will resent additional care help...but for us it was a positive step...I initially was unsure as I felt that I was letting her down but the quality of life my mum and her husband now have is far better than it was...

Your mum is remembering the past and in honesty she wants you to believe that she is coping...thats all part of the pretence around the illness...In telling you that neighbours help they do indeed probably look out for your parents but in honesty they probably dont do as much for them as your mum would like you to believe...I remember being absolutely mortified when at last a few years ago I realised that the food I was putting in the fridge wasnt being cooked....I couldnt believe that I had been so stupid as to think that my mum was still preparing an evening meal....but thats what she wanted me to believe....I'm quite ashamed to say that dispite the evidence infront of me that they were only eating tea cakes and biscuits with the odd portion of fish and chips from the takeaway I chose to believe the word of my mum over what was clearly happening....

For us the introduction of carers has been on the whole positive...its by no means the best solution and it never really stops me worrying about my mums welfare,but as I said before it has allowed them to remain in their own home....

spaghetti_monster

Hi again,

was in a bit of a hurry when I wrote this morning, but just wanted to reiterate what I and the other posters have said about being quite quick to try and sort things out and not being afraid to change the parent/child dynamic and stick your oar in.

Of course hindsight is a wonderful thing, but I think our family had a very lucky escape:
Dad was getting increasingly violent towards Mum (she was brushing off the seriousness of this). We had already persuaded her to get more help and I was thinking - we really have to get him into a home and persuade her that this is the right thing to do. Then one day he attacked her much more seriously - she could have been killed, but miraculously only got a few bruises. The police removed him, he was hospitalised and hasn't been home since. I believe the stress of all this ultimately caused his condition to get much much worse (he's now in the end-stages). And I wish I had interfered sooner and more strongly.:(:(:(

Of course every family dynamic and situation is different. Does your Mum know she has Alzheimer's? My Dad totally denied it at every stage, which is very common and actually became very angry when confronted with it. I wonder if it would have made any difference if he had acknowledged his condition. For us it was also actually a bit of a step to get my Mum to recognise he was getting dementia. (Incidentally, she is early 60's and very fit and healthy but his care was really beginning to take its toll on her).

It's such a sad and complicated disease - not just forgetfulness but a personality change and all sorts of strange behaviour. Violence/aggression is very common - but there can also be danger from other things as other posters have mentioned. I was always dreading kitchen accidents, accidentally burning things, eating/drinking strange things not to mention wandering off.

What made our situation slightly easier is that the home was always Mum's domain and Dad just gradually withdrew, leaving everything to her. (For example he never had to make any decisions regarding shopping, cooking, cleaning, bill paying, family holidays/visits - he would just help if Mum gave him a specific task, even before dementia set in) If your Mum has (or had) as much influence/responsibility as your Dad - and also doesn't realise she has dementia, I can see how this will make things very difficult - if/when it comes to over-riding her decisions/opinions.

As other posters have suggested do get all the help you can (GP, SS) and I also recommend the Alzheimer's Society. Also they have a great forum - talking point:
http://forum.alzheimers.org.uk/forum.php

Mojisola

LEJC wrote: »

Your mum is remembering the past and in honesty she wants you to believe that she is coping...thats all part of the pretence around the illness.

Someone with dementia may feel that they are doing lots of things they used to do and it's important not to contradict them. That sets up conflicts in their mind - I think I'm doing this, they're telling me I'm not - which is real? Confusion like this will result in more emotional behaviour and generally upset the person.

My Mum is much calmer and happier since I've started working with the way dementia makes her feel, rather than trying to get her to remember things right. I do sometimes feel like I'm acting in a comedy sit-com as things can get quite unreal at times!

Humour is very important and I can usually get my Mum and Dad laughing about something while I'm with them. Laughing makes you feel good - you get a boost of seratonin when you smile and laugh.


For us the introduction of carers has been on the whole positive...its by no means the best solution and it never really stops me worrying about my mums welfare,but as I said before it has allowed them to remain in their own home....

My Mum and Dad are still at home as well - with increasing help from paid carers after I realised that I was making myself ill trying to do everything for them. We still have emergency phone calls when one of them has a fall - luckily we live quite close to them.

I love the sensitive way your Mum's carers were introduced.

Another argument I've used with Mum is that the carers need the work and it wouldn't be fair on them not to have them any longer. As someone who always worked, she can empathise with that.

I also tell her that when I'm 88, I'm going to expect someone to cook my dinner for me - I'll have done it for enough years for myself!

phoebe1989seb - you have to find the right buttons to push that will work with your parents.