Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Hello, how are you all doing? :)

I've just found this thread, I hope it's ok to join in. My FIL has vascular dementia and is cared for at home by mil who is in her 70's. She has very little respite so finds it tough going, we do what we can given thre dc's, jobs etc. They are coming to us for Christmas, but not staying over as FIL doesn't really like being away from home the plan is to come for the day and again on Boxing Day. Our big concern is that FIL will get restless and want to go home within a couple of hours, meaning poor Mil will be very upset to cut short Christmas. She absolutely relishes just getting out of the house let alone a day with us and the grandchildren. If he insist on going she'll be devisated.

We're trying to think of ways to prevent or stop this happening. Most of the problem is that he can't settle, he can barely join in a conversation although we try to include him as still has some awareness. He can't follow anything on tv other than football (that's Boxing Day) and he just shuffles about the house after a while. Mil givs into him quite quickly when he want to leave, but I think it's because he can get nasty and she doesn't want us to see that. Any ideas?

Welcome to the thread that no one really wishes to be on. Not a lot to offer but the only thing I can think of is if it is not too far, could you all go back with them and spend some time there after he has settled. For the future make sure that they are applying for and getting any help around - attendance allowance, day respite care etc.

Welcome Doriss and sorry you have reason to be here. Could you take it in turns to take shifts with FIL at their house if he would tolerate it ? Unless you can find a football DVD or two and have that on for him?

Lots been going on with Mum. She's been told she has to sty by the CH but not that SW says no capacity as they felt SW should tell her that so she will on 30th. Mum is pissed off with DBro as says he has let her own. I refuse to be played off against him and said he tried hard with live in carers. He was supposed to have sorted Sky for her but hasn't and hasn't spoken to her since she went in.

Yesterday I moved a car load off stuff out to her in horrendous weather. She's agreed to have some furniture out as well which is good. CH told her I am nothing to do with this decision, it is SW and and DBro. I did tell her I think her time at home has passed and the house needs to be sold (but omitted to tell her there is an offer on it). She she wants to be in a flat but not attached to a CH. I said that could all be discussed after Christmas when Brother available as that's his area.

She's pretty miserable really as knows she has run out of money too. However she has made a friend there and is accepting she is staying for now plus I'm not the enemy at the moment, thanks to CH trying hard to preserve our relationship. Each day she is there she gets sharper assumably as the Galantamine builds up in her system and assumably be near the ooint if regaining capacity which is clearly going to cause issues. I think we're in as good a place as we can be in the circumstances at the moment but can see Jan and Feb will be rocky.

I hope everyone has as good a Christmas a possible in the circumstances. You've all been a huge support this year so a very big thank you to you all.

Might I pop in ...my father has vascular dimentia and it has hit me today that this will probably be the last Christmas that will make much sense to him as he has gone on a bit of a decline over this year.
The symptoms were there a good few years ago , just reading some of these posts ( sorry not read all of the 955) , the confusions , anger, shouting, frustration - he was such a active man great career , great with his hands and now he almost hides behind any form of illness using it as an excuse and a barrier . He is fine on a superficial level relying on a few well drummed in phrases ..always faling back to familiar territory " well i am a bit old and senile now ..ha ha ha..." I bought his presents for mum and he had got a couple of small ones ( i was pleasantly surprised) but he couldn't remember how to wrap them. He forgets words now and yesterday he introduced me to the next door neighbour who I know. I live abroad and I was last here in July he has got worse. Mum is taking the strain - badly it is almost as if she resents but accepts, her paitence is low at times and it is dragging her down. She is also can go OTT when explaining things so on the phone I never know if its genuine or 'inflated'.
My sister lives nearer than me has a very busy career and older dcs so she does try to pop in and help- but really there is not much we can do!! We have POA sorted out plus When I am here I take the strain do the cooking etc and my dc are younger so help to lighten the atmposhere and both still adore them.
I don't really know why I am posting ...probably as its easier to unload here, my dh is supporting generally but he watched his father die of lung cancer whilst he was still smoking. His mother still smokes and this has hurt him so much but he has accepted and deals with it. Well we are all going to carols now and I think i should just try to appreciate this Christmas for what I have and what he will remember!

Hope tomorrow goes ok for everyone. Gran will still be in hosp here.

Best wishes to everyone and I hope things go well.

Last year I was running around trying to find emergency care arrangements, with a fall back of staying over Christmas and New Year to provide 24 hour care myself. My thoughts go out to anyone coping with care, medical emergencies, and the general chaos of dementia, whilst trying to give your children the Christmas they want.

All good here. Did not get round to making the cake till too late, then DH bought golding icing sugar. So kids are in the process of icing a yellow cake.

Happy Christmas everybody!

Needmore - I rather like golden icing sugar, unless one is doing an old school snow scene cake. Sure it will taste lovely.

Well, we spent 3 1/2 hours in the car today to take christmas lunch to my parents. With a little stretching of the truth around items mum swears she dislikes but eats happily if they are described as other things, she ate pretty well, and dad loved the three bird roast. That made it worth it, though mum wouldn't wear her new trousers and had no clue who dh was.

Rosa, does your mum get any support from the AS or a local carers group?

I need to ask a question and I suspect this is probably the best place to do so.

How do I make DH (although separated) understand that he is not helping his Mum by ignoring her increasing memory problems? She is in her 70s, getting more and more forgetful, tried to wrap up some household items as Christmas presents insisting she'd bought them, and is actually still driving, although IMO she should NOT be. He refuses to speak to her because he knows she will be upset by it. Well, of course she will be upset, but she'll be ALIVE and she won't have an accident where she could potentially hurt someone else. Recently she has gotten lost and confused when out driving in her home town and got upset, managed to get home. Her reactions are not what they should be and her driving is getting a bit erratic.

I'm really worried about this. He complains about how forgetful she is and how he thinks she is deteriorating, but neither he or his sibling will talk to her. I am so frustrated over this, however, I am unable to speak to her (and I feel it should be her children doing this, not me) as I am unable to carve out any significant time to talk to her alone.

Please give me some ideas how to get him to understand this is important and he MUST speak to her.

Hi Carrotcake. My suggestions would be

1. Getting a diagnosis at an early stage gives the option for trying the AZ drugs which can slow progression down
2. Things like power of attorney have to be set up while someone is still 'competent' - without this his mum might end up with all of her affairs being dealt with by a stranger.
3. Could he deal with the guilt if his mum killed someone while driving?
4. Everything is much easier if dealt with early on - the worst possible outcome is if something happens and you are in the situation of finding care under pressure

You could also take the tack of seeing if dh would ring mils gp and ask them if they could do a memory assessment as part of a 'routine checkup', so there would be no need to broach the subject directly

CMOTDibbler Thank you. I will speak to him about having him ring her GP about a memory assessment. I have tried #3 repeatedly, even adding about the guilt if his mum was killed because of her driving, but to no avail. He's lax about taking care of his own health, so I don't foresee him getting himself together to get her in for an early diagnosis. I will point out this information to him once again, adding the information about power of attorney while she is still competent. It's possible if I mention that some meds can slow down the progression that he will realise that time is of the essence here.

I appreciate the information, thank you again. Hopefully he will take this more seriously after hearing it.

Hi carrotcake. You might also factor in this weird thing that seems to exist between men and their mothers. Several of us have found it difficult to gain support from our brothers because they seem unable to accept there is anything wrong. Then when denying the problem becomes impossible they run rather than face it.

If you dont get anywhere with you ex, and really feel his mother is at risk you can inform social services who should then do an assessment. Given you are not a direct relative you might give specific examples of concern. However this it a last resort. Much better your ex gets his mum to sort out POA, has a sensible discussion about giving up driving and perhaps a move to some sort of sheltered accommodation where support might be available.

You might talk it through with the Alzheimers Org helpline or try their forum. Good luck.

Drugs like Aricept can delay progress of dementia but not reverse it. So the earlier you take it the more function you retain. Really worth her seeing the doctor early. Good if she will allow her ex to go with her.

Hi Carrotcake. I can't add to what the others have said really. Pointing out if he's wrong and there is a problem and he misses the opportunity to get her onto drugs sooner rather than later is probably your best.

My Brother is one who was very resistant to the idea there was a problem and it has created chaos to be honest. My Mother is very lucky and appears to respond very well to Galantamine and does seem to regain some cognitive function when taking it - she takes herself off sometimes so we can see the difference. That generally doesn't happen though and the effects probably won't last long.

Brother spoke to her yesterday and she seems to be accepting going back to her house is no longer an option (probably because finally we are both saying the same thing). She is asking for another capacity test which he thinks she would fail as really doesn't understand her care needs. She said to him about a flat so he said we should look at that but doubts there will be anything suitable.

I forwarded again him an email Needmoresleep kindly sent in the summer about a local option in case he couldn't find it. Also suggested there is a place he could look into in our old home city which might well be suitable and could work possibly if he does come back and buy a house there as he says he is going to do (!) I think we're both hoping given time she will accept where she is, early days yet and I think getting the flat properly sorted will help.

Needmoresleep Thank you. Yes, it is a bit of that regarding running away from the problem, or more accurately running away from attempting to find a solution. I think he just figures if he ignores it everything will be fine. His sibling knows MIL shouldn't be driving but is allowing my ex to sway her from talking to their mum. He says it's because he thinks sibling will be too blunt and will either upset their mum or get into an argument with her over it.

I know she will never agree to moving out of her home. Her husband (FIL) died a few years ago, and she is still struggling with it sometimes. I think she feels closer to him in their house and will not willingly leave it, no matter what.

This is really hard to discuss with any of them, as they appear to be doing the head in sand thing. I just can't get my head around how they think it's helping. My mother has had insurance for years to cover the cost of a care home for herself for when she gets too elderly or incapacitated to live on her own. She has even checked out local care homes to see what ones she likes so she could give an opinion on which one she would prefer to go to when the time comes. She's very realistic and knows that ignoring it will not help her in the long run, although she is roughly the same age as MIL, she is fully capable at this point.

Wynken Thank you. I will definitely point out to him that the longer they delay the less opportunity they will have to give her meds that can help.

Sounds familiar. DB spent three years telling me I was too blunt, that I upset my mother, and even that I visited to often. As far as he was concerned there was not a problem. Till she fell, and clearly could not go home without care in place. Then he essentially phoned me and told me to sort it.

Part if the problem is that my mother wont admit vulnerability to him but will to me. So she accepts an invitation to spend five days with him over Christmas but then tells me she does not want to go as does not want to wake up in a strange bed disorientated and face Christmas lunch with a large crowd of strangers.

I suggest he speaks to her again and get some angry response about me trying to prevent him seeing his mother.

As if. So I get landed with all the care and responsibility yet am the one who is wrong. It is as if all his anger about my mother's condition is directed at me. If I too had ignored the problems perhaps they would simply not have existed.

Family responses to dementia are as complicated are the disease itself.

DM would not have moved if she had not had to. (She would not have tolerated 24 hour carers in her home.) However she is much better and happier. Moving when circumstances change and something more suitable is something we all have to do.

WBN. The advice on possible alternatives was based on my own experience of looking at options and was sent last summer. At the time your brother dismissed my suggestions as not being suitable. He felt your mother was not sufficiently well to cope with semi-independent living. Your mother then moved to a care home, moved out again following your bother's legal intervention, and then moved in again when using 24 hour carers failed.

The advice I was given was to keep moves to a minimum to allow someone to settle, regain routines and thus retain as much capacity as possible. I don't think after the last six months you can put the clock back. After all the commotion your mother needs the chance to settle, either at the home she knows or where she is now. The risk with sheltered accomodation is that she does not settle. If that happens you will have had two care failures and have stretched the goodwill of her current care home, probably beyond breaking point.

Well Christmas is over for another year and I am feeling pretty worried about my Dad. He has always been a lovely guy though he can get a bit stressed out and shouty and is now in his mid 80s and very deaf.

Anyway my three year old threw something at him today and my husband saw my dad grab my son by the hair and shove his face into the sofa. We were both horrified and told him that this was completely unacceptable. He was upset that we were upset but didn't really seem to get it. Just said that he hadn't hurt him and that he had just been play fighting. A couple of minutes later he was playing normally with the other children again as if nothing had happened. It was really wierd and very upsetting.

During the whole of my life my dad has never raised a finger to me. I can't for example remember ever being smacked by him. So to me this seems completely out of character. Does any one think this could be a sign of dementia?

Worriedaboutdad - sorry to hear that. Are you noticing any other changes in your dad apart from this?
Obviously some older people without dementia have a lot lower tolerance for the noise and play of small children, and hearing loss can vary by pitch so screeching of little ones can hurt. But if this sustains as a personality change, then it can be a sign of dementia.
My mum was the gentlest, kindest person I'd ever known and then she screamed at my then toddler son for chewing the zip of his cardigan - and we then generally saw her personality change.

That must have been upsetting for you all Worriedaboutdad. I guess as CMOT says it would be sensible to think about what his behaviour has been like recently and whether this is a one off or if looking back you can see other things.

Some people with Dementia are very very good at covering. Mum for example has some stock phrases that are very convincing the first time you hear them and for her it was personality changes that showed before memory problems.

CMOT and WBN thanks for your replies. I actually stayed up much of the night worrying about this.

I think I am going to have to wait and see what happens. I don't think he is really showing signs of memory loss. Often because he is so deaf what he says doesn't appear to make much sense because he doesn't really hear the question. However once he does understand then what he says makes sense. He doesn't forget appointments to meet me and sends birthday cards to the right people on the right days.

I would say over the last couple of years as his hearing loss has got worse he has withdrawn more into himself in social situations. He lives alone and many of his friends have died so most of the company he gets is from me and my DB and his DGC. Perhaps that social isolation and the deafness and some cognitive decline could explain yesterday's incident.

The other out of character thing that he has done recently was to accuse me of chosing a more expensive place to eat lunch because it was his turn to pay. That was odd because he has always been very generous both with his children and in general giving money to charity etc. Not the sort of thing I have ever heard him say before. I offered immediately to pay if it was an issue and he dropped it.

He also started shouting at my youngest's christening a couple of months a go quite loudly that he couldn't hear the service and my MIL had to get him to be quiet. At the time I just put that down to being deaf but really it was a bit odd.

Anyway whatever the reason it is pretty sad because I will have to be careful with my children around him now. Not that I was ever going to get him to babysit obviously but I would for example have happily left him playing with my three year old in the living room while I cooked dinner in the kitchen.

I phoned today to see if he was ok. I was kind of hoping for an apology which would have reassured me a bit that he realised that what he had done was wrong. But he didn't bring it up.

I think WorriedaboutDad it is sensible to keep an eye on his behaviour. Some types of dementia do first present with behavioural changes rather than memory problems. Also infection can create problems, urinary tract in particular, might be an idea to get him checked out for that or any kind of vitamin deficiency.

Things moving along with Mum, though I am trying my best to have a break until the DC's go back. Brother has been reviewing other types of care and feels that given her personality and history to date, anything other than current care arrangement will lead to medicine non compliance and therefore isn't suitable. He rang me yesterday. It seems she had been Waiting for his call on Christmas day then told him to fly over and get her out, to which he said he wouldn't be and she had to accept she is staying there for now. He is finding it hard to know what to say so I suggested he calls CH for advice.

I called them to ask about taking things in. They feel to wait until after Monday when SW is supposed to go in and tell her she has to stay to see how she takes it nd whether she is going to fight it. Then they will talk to her and tell me when the time is right.

Think what they meant by fight it relates to whether or not a DOLs will need to be applied for so been reading up on that. CH haven't done one before and I think feeling a bit out of depth. They were asked to apply for one on the summer, rang for guidance and refused as they felt she had capacity at that point. Recently they said they feel she has capacity but not ability to carry things through so I'm not sure what will happen if asked to apply again by SW. Think we're all a bit out of our depth here for now.

Been reading the Alzhemers's society fact sheet and it sounds as if she will need to be assessed again by independent from her case assessor and another. Don't think it is a foregone conclusion that a Dols will be issued as read somewhere about the percentages that were and weren't . So it doesn't seem that in reality it is quite as simple as it sounded before Christmas ie. lost capacity, go to CH, apply for Dols if needed as SW said she doesn't have capacity but is borderline. My concern is if she is borderline and we all know capacity fluctuates that she may be found at assessment necessary to apply for Dols, to have capacity.

Hopefully when told by SW she has to stay which is then reinforced by Brother (who after dealing with her and live in carers is now very realistic about her care needs thnk goodness) she will agree to stay and a Dols won't be necessary. However she has told me there is no way she is staying and will fight it and sue SS so can't see her taking it well and I don't know what SW will say if Mum asks for another opinion.

On the plus side, if Dols is applied for my Brother as Attorney can say he supports this option as daily and live in carers have failed and CH feel with level of support she is currently being given means she is past sheltered housing so current place is only option and least restrictive as still will have a self contained flat . I think whether the Attorney agrees to Dols is something that is looked at. Both my Brother and I are impressed with care given by CH and how she responds to it which we both feel is important going forward when she deteriorates. He feels that her back on meds now isn't the level she reverted to in the summer so we are seeing progression.

So yet another long post in the saga. It's nearly a year since she had her first memory clinic assessment, what a year. Though I am still very upset about what my Brother did in the summer and will never forget, I'm glad we're working together now as feel it is much better for Mum. Him being Health Attorney and not here works well as I just say it's not down to me. Think we've potentially got a few more unsettled weeks ahead with the Dols stuff potentially hanging over us. First step is next week when SW goes in and see what happens then.

Well we had our DAd free Christmas, slightly overshadowed by guilt. I went his home on the 27 th and brought him t London for a concert.i was pretty confident he d like it. He didn't, he muttered under his breath th whole time,complained it wasn t proper music, we left in the interval. He didn t recognise his friend who d come along to join us. He was happy to come to my place afterwards, but didn t really recognise my kids or husband. The highlights of the whole episode were the 2 meals we shared. He was in big hurry to get home. Once back there I cooked him and bro a meal and threw myself into cleaning . After the meal he jus wanted me to go/ accompany me to the station. And got quite abusive when I pointed out the train wasn t leaving for 50 minutes and I d just have to wait around.
DH was quite shocked at dad s deterioration.i have to face facts, he needs more care than he s getting ( living with bro who does a bare minimum, my visits which average 3 times a month, twice a day carers who often miss him because he is out). I need to look at residential care, but fears ( apart from the cost) are that 1) he will absolutely refuse and get very angry. 2). Someone will come along and say he has capacity and my relationship with him will be ruined. After the traumas WBN has been through I am very apprehensive about the next year and the inevitable deterioration and steps I am going to have to take.

I'm really sorry to hear that Bob. I'm glad you did get to spend a bit of time on your own though.

I totally understand how it feels to be facing this and I know there's your Brother to consider as well. What happened with me is quite extreme and came about because of my Brother going totally into denial and totally flipping. All the professionals involved have been good and once they got the gist of what was going on have been very happy for me to hide behind them in effect.

Mum's situation has also been complicated by the Galantamine. It is amazing the difference it makes when on versus off. She is hugely sharper once in CH and on it so has dramatic fluctuations in capacity. The professionals are wary after what happened in the summer. She's also got Vascular along with Alzheimer's which adds another layer of complication given the unpredictability. Given my Brother's previous behaviour professionals are wary around her re capacity.

My advice is to start a diary of his behaviour and start tapping into the local support system, maybe have a chat with someone from the Alzheimer's society. I am very grateful that you mentioned you had found the counselling helpful, I have too. I think you'll find it helpful whilst you are going through this next bit.

The other thing I found is how lovely people are and how much support I have had from friends and family. The only slight downside to this is everyone has their own way about doing things and you'll get loads of slightly conflicting advice about how to do things. Listen, take on board but find your way through which is right for you. That may be very different to what others have found have worked for them as Dementia as we all know is so unpredictable and each family dynamic unique. This is where I have found the counselling hugely helpful to help clarify my own boundaries and reevaluate them as things have progressed.

Although things are still not entirely straight forward with Mum, I can see the light at the end of the tunnel now. It could all be resolved when the SW goes in and says she has to stay. Dad always says she will fight and fight then when presented with a done deal so to speak, gives in. So until proven otherwise I live in hope ! I sleep well now knowing the phone won't ring and am glad that I decided to speak to my Brother again and have stepped back in to a much larger extent than I intended. I feel it's the right thing as although it's a slightly fragile kind of peace it is peace which is better for everyone.

Mum is now wary about alienating me again so far more careful of how she treats me. I am no longer evil and plotting against her, that's the GP and SW ! Our relatinship is recovering albeit on a slightky different footing. It's feels quite cheesy saying it's a been a journey but it feels like it. I hope what has happened has highlighted some of the potential pitfalls so it all being on here will help you navigate your way round them to some extent, or at the very least be able to minimise them where possible.

There's no denying where you are standing now is a difficult place but it won't always be like this. I went into 2013 feeling no hope for the future but going into 2014 the hope has returned. I know what lies ahead for Mum but I am confident that after this current issue is sorted out, she will receive the best care available for her in the future.

Just found this thread. Can I join? I'm a bit in denial about Mum. Her memory is much worse although she is fairly good when with regular carers following the routine. The care agency don't help as 4 double calls a day can mean any permutation of 8 people in one day. Lots of new staff over Christmas. I live a long way away so guilt over amount I can do is a feature. SW is also off her case. I put in a complaint to her by email and got no reply and found out from care agency that she had changed areas. Lost dh's gran a year ago and she didn't know me for years.