Looking after Mum

It was me that started this original thread a few months ago and up till now I've not had the time or energy to update or to thank you all properly. So THANK YOU.
Mum became very ill and ended up in hospital then an evaluation care home.....which was the worst thing for her personally but did get social services etc involved which then gave her support.
It's been a battle to say the least.
Mum has been very nice to me, even loving at times and I'm so pleased that is the case in these latter years. If I'm honest I just wanted her to die so I didn't have to endure any more cruel and callous treatment from her. But the new her is a massive improvement.
My heart is at peace.
Mum is at home, her dementia has improved massively due, we think, to much support from my sister and me and us taking away much of her independence.....driving, banking, shopping.....in the guise of we will help you (which we do) instead of her feeling that the rug has been pulled from under her. She still has her moments though!
I've discovered so much about dementia and how to manage it. Every dementia patient is totally different, I just can't stress that enough. Handling it with tolerance and lots of tricks up your sleeve certainly makes a difference.
Thank you again ladies.

Whoops! Glad this isn't the pedants thread! Of course I meant 'mums' rather than 'mum's' in Think back to when we were children - mum's were the ones ...

I had a very difficult job when suggesting to ex-DH and his sister that their mother was showing classic signs of vascular dementia. Thankfully they went together to her doctor, where it was confirmed. Unfortunately they initially disagreed on her care which caused a rift between them but that was settled amicably before her death.

I think what I'm trying to say is dementia in a parent is difficult to cope with but siblings may need to help each other more than at any other time in their lives. For the benefit of all involved it is necessary to work together to support the parent AND each other through this awful illness,

My mum is 94 and probably has the beginnings of dementia- her memory is steadily getting worse. She is mostly OK but can express sudden dislikes to something or someone, we find it best to just listen and nod as later she might change her views. There is some evidence that music helps with the condition so perhaps you could get your mum some CDs of old songs and listen to them together. My mum has also just got out all the old photo albums and is enjoying going through them. I hope you and your sister have a good relationship I think having someone who will listen and laugh with you at some of the things that happen helps.
Good luck.

Well, there is the (very) occasional funny side, even if it's of the black humour variety.

My dh would sometimes come with me to visit. He had always been a 'golden boy' to my mother, so she had usually been very pleased to see him.

By this occasion she was past making any sort of meaningful conversation, said very little, and even when she did, it was usually very hard to make out what she meant.

As usual, I had taken chocolate - a bar of Aero, reasonably soft to eat. I gave her a piece, then gave a piece to Dh.

My mother turned to me and said very crossly, clear as a bell, 'i could have had that!'

She then turned to Dh and said even more crossly, and again, loud and clear as a bell, 'YOU'RE A VERY - NASTY - MAN!'

I swear, one of the carers who was busy nearby, nearly wet herself laughing.
And we were in fits later. Chocolate was evidently a Very Serious Matter!

Poor old thing, though - her former self would have been so mortified to see what she'd become.
By then, though, she'd had dementia for so,long that sadly had become 'normal'.

kitty not only did she not know me, she was convinced I was her mum. This happens more often than you might realise. Think back to when we were children - mum's were the ones who looked after us, cared, fed and dressed us. That's what you're doing for her now, with the help of the nursing home staff, so try not to let it upset you. Be happy that she is recognising she is being looked after ((hugs))

Dementia is sad in whatever form. My Mum is in a home now for two years - after the doctor in hospital said she Needed 24 hour care now, which neither me nor my sister could provide. She has had vascular dementia for approx 12 years but is still able to know us all. She can't remember names of or recall other relatives and repeats things over and over but we just listen and agree if necessary ( never argue a point) and change the subject. The home is very comfortable and caring and she is well looked after - there is plenty of company and things going on and she is very happy there. we visit and take her out as often as we can but we still feel guilty about her being there. Old people are living much longer - my mother didn't have parents still living in their eighties and nineties.

Oh Witzend ...

There are upsides to all this. You certainly learn who your friends are - including your virtual ones!

Kitty, my mother sometimes used to think I was her sister - the one she never got on with!
But most of the time, once she no,longer knew me, I was just a 'nice lady' who made her cups of tea and brought her chocolate.
That is, until she stopped being able to make any conversation at all...

Is that vascular dementia?

No-one can get it right all the time. We are all human!! I'm lucky that mum is in a nursing home so I can walk away and I have often! If I'm not 'in a good place' when I visit I can be unreasonably hurt by mum reverting to her usual self. This week, not only did she not know me, she was convinced I was her mum which got to me for some reason.

I agree about the picture of the "gentle old soul just getting more forgetful" being both over simplified and often wrong Pogs.

Often, in the early stages, people can work out ways to remind themselves but there are still bits missing (rather than forgotten). They may actually want to know it is not the day they think it is too. The changes from that level to one where it is better just to leave it can be very gradual and can change from day to day, week to week. I still think 'telling' someone that they should always agree is too simplistic and likely to make people feel they are not 'good enough' at being a main support for someone. I have days when I am tired (I have my own health problems) and I just don't get in there quickly enough with the right and soothing answer . Usually it is easy to smooth it over with a quick sentence but I am not always on the ball and I don't believe everyone else is either. I would never wish to tell anyone with dementia they are wrong but sometimes when mum says it's not the day to change her hearing aid batteries' I can't just say 'no it isn't is it'- she would be cut off even more from the world - but have to say "I know, I can't believe a weeks gone by already can you" and we are fine but it is misleading and makes it sound too simple to say 'just agree'.

My ex also has a dementia and it has affected the parts of the brain which allow you to know what is appropriate. I don't think those who care for him could 'always agree' or he might get arrested!

I've mentioned this before but - my mum has always been difficult and, I think, disliked me but loved my brothers. Whe used to stir up problems between us all the time. It turns out that she was lying to both sides to such an extent that I was ostracised and had no contact with any of them for 6 years. Mum being ill brought us back together and we have a really good relationship now. So, in way, caring for Mum has had an upside and I don't think that she is unhappy as she just lives in the moment.

I hope you will enjoy your time with your DM Olene and hopefully be willing to return to give your sister another break. My DM is in a similar situation and I am her main carer. Unfortunately my brother refuses to communicate with me, though he does visit DM weekly and 'cares' in his own way but I feel the loss of a sibling to share these feelings with. In the main I enjoy this caring time with DM, not least because she does appreciate all that I do and as a child I never felt appreciated, particularly by my Dad. So there can be some benefits and at the end of the day, if we cannot be there for our parents as they reach the winter of their lives, what is it all about? I truly believe in the circle of life - it is a privilege to care for our children and then for our parents and hopefully inbetween establish enough of a life for ourselves that we do not resent the caring role that so many of us find ourselves in. There is a lot of support out there and I hope your sister can find more given that you are so far away. If you are able to ring her regularly and offer telephone support that, too, would be most welcome I imagine - she needs a sounding board too. I hope the reality has not been as bad as you feared and look forward to reading of your experience.

Sorry ... should say "I found IT BEST, for the sake" ... etc.
Must learn to proofread before posting not after!

Oh, as far as the difficult relationship is concerned, I had the same experience too and I found, for the sake of my own sanity, to put that aside. Not easy I know, but what has happened has happened and caring is a whole new experience. Good luck. xx

I'd take a look at the Alzheimer's Society website. They have a forum, Talking Point, where you can find tips, advice and a supportive listening (reading) person. My mum had dementia and I'd've been even more stressed than I was without their support. I now volunteer as a befriender with the Alzheimer's Society and I completely agree with the "agree with everything" advice. I only correct if it's absolutely necessary. If the person says it's Tuesday, then it's Tuesday. If they mistake you for someone else, it might be that they miss that person, so rather than correct them, I'd ask them to tell you about that person. Not always possible, but it does save a lot of stress and arguments.

Hi Olene

I hope you are reasonably settled in , presuming you are staying at your mothers house and quickly learning the routine.

May I take the liberty of saying I too advise getting a correct diagnosis as to your mothers condition. My MIL gave all the signs of having Alzheimer's but it was in fact a prolonged period of having a severe water infection. She even ended up in a dedicated Mental Health Ward before this was clarified as she had at one stage gotten so confused. It was awful and quite shocking to think an infection can create such a problem.

My father had Alzheimer's and I realise Alzheimer's can take various forms. I was a ' very limited' carer for dad as I have health issues that meant I relied on Social Services to assist with his care. I must have been lucky but I found Social Services a great help with forms, his care package etc. Dad was on Pension Credit so obtained Attendance Allowance etc.

Do you know it took a light bulb moment for me to understand dad was having difficulties. I kept telling him not to put his bread in the fridge and stop leaving the cheese in the sun which was turning it to mush. I couldn't believe I was so stupid as other signs were starting to show but one day I noticed his Morphine had gone down quickly and tablets were missing. He had somehow taken overdoses of medication but showed no signs of doing so, work that one out he could have knocked a horse out with what we believe he had taken. The reason was he had become incapable of knowing if he had taken them, what time of day it was etc. The doctor rapidly arranged for a Dosett Box system. We were thankful dad still oddly enough had a reasonably good memory for faces, family and remembering his life story . He couldn't cope with day to day chores and had no grasp of how to use the video for example, to that degree we were lucky but he also had physical problems which added to the mix. After a heart attack at 94 he had a Pacemaker fitted but sadly died of peritonitis whilst in the hospital.

I have rambled on about my personal experience to try and remind you that there are degrees of the experience we all have experienced when talking of Alzheimer's. I would think if your sister has not had your mother diagnosed there must be a reason for that and rightly or wrongly I am thinking because your mum is perhaps 'showing signs' and an assumption is being made. She does need a confirmed diagnosis for you and your sister to discuss what the future holds 'for all of you'. One thing in all of this scenario is things will not get better and your sister whilst coping at present might well need to have a serious discussion about the future with you so be prepared to walk in her shoes , consider what mum needs and if I may be so bold clarify what level of help you are able to give once you return to the Middle East. I found it was better to keep things on a totally honest and frank basis with my sister who lived miles away to stop any arguing or feeling of one sister doing all the caring. I fully understood her position in being unable to help with dad's care but I knew I could talk to her and have a moan without it seeming I was accusing her of leaving it all up to me. I found it very important to maintain good respect between my sister and I found solace knowing that my sister was not able to help with the day to day problems but understood the issues that affected me .

I have gabbled on but can I say something a tad controversial. We are human beings not robots. There are occasions when our patience will be tested, our tempers may fray and we may well say or do things we might quickly come to regret. We are not saints and if there is a moment or two your are finding things out of your control or upsetting don't be surprised if you find you are in a zone of not like yourself for your thoughts. I will certainly admit to having many moments where I found things difficult to cope with.

I hope your sister has a well earned break and you both find a good path to tread between you for the future. Your relationship is just as important as that of your mothers at the end of the day.

Icy, that did make me laugh, bra on last!

The care home my mother eventually went into was very good, but there was still the odd occasion when she had refused help with dressing - she could sometimes be decidedly stroppy, especially in the mid stages - and I found her dressed in the usual trousers and jumper, but with her nightie still on under the jumper!
Staff would be very apologetic, but I never blamed them in the slightest.

My poor mother also went through a 'nasty' stage - seems very common - and would say terribly upsetting and quite untrue things about my husband and daughters. I did once tell her that if she didn't stop saying such horrible things NOW, I was going home this minute - and I meant it, and she must have known I did, since she did stop, at least for that evening.

She would also sometimes say really awful things to my brother, who had been the Golden Boy, and had always been very good to her. After one such horrible outburst I was truly shocked to hear, for the first time since he was a very little boy, his racking sobs down the phone. It was particularly awful in someone normally so robust and jolly. And more especially since her pre dementia self would have been horrified at such behaviour.
Those people who like to think dementia means a gentle old soul just getting more forgetful, and that all it takes is a little kindness and patience and lots of cups of tea, just have no idea.

Olene just wondering how you are getting on. My mum also had dementia and died last year. We now think she had actually been declining into it for years before it was diagnosed. She was never a nice woman, but the loss of inhibitions just took away any filters, if you see what I mean, so she would increasingly say horrible, accusatory things to me and to my sister who did everything for her. I really sympathise with how you feel, try not to let it get to you and if you need to, go and escape into your room when it gets too much. You are doing this for your sister, and it is that relationship that actually matters now and for the future.
(There are moments you will be able to look back on and laugh at in among the draining negatives: my mum at 94 getting herself all dressed up 'because she had a job interview', that I apparently had to take her to. Oh and she had put her bra on last).

Witzend I think you must have come across some of the people we have!

Thanks Kitty - it's a great idea to swap knowledge. A lady from Age UK helped me with the AA form - mum gets the higher level. I think I am reasonably intelligent but it is difficult to know what they are looking for so well worth getting some help.

Grandson I am sorry to hear about your mum but also your dad. They call dementia 'the carers disease' apparently so you are right about it affecting the whole family.

I lost my poor Mother last June
I have two brother's and a sister
She started to say horrible things to me which was so unlike her,cursing at me saying i do nothing for her,and didnt want me or my sister at the hospital,only her precious sons!
We all laugh a little about it now as that wasn't our mother speaking.
How i wish i could have her giving out to me one more time

Hi yes it is difficult to look after your mum with dementia my mum who died in may last year had vascular dementia whicheck effects there body as well. Her whole demenia changesture she could be hard work and so sad to see your mum who was your best friend change so much. My dad now has health probs so it's one to another it effects the whole family. Just rely on good friends and family it brings you closer good luck x

Witzend, loved your comment about sitting just out of sight and indicating with the doctor when the answer was untrue. Did the same thing this week at A&E, stood behind the wheelchair nodding my head one way or the other, worked a treat.

Having come back from my winter trip 6 weeks early to help my disabled daughter after being discharged from hospital I know exactly where you are coming from. I am not sure she actually likes me, she has told everyone her brother is next of kin but always seems happy to see me but after a few hours we are both glad I am goung home. This time I had to stay for a week, she lost her sight suddenly (coming back now) and needed someone 24/7 even though she has great care from Scope its only for 4 or 5 hours a day. My way of coping was, first I can't change her attitude, so let it wash over me, secondly nothing I said or did would get her to change how she was living, so I accepted thats her choice. I had my own room to sleep in so every now and again I would see her comfortable and then go and shut my self in my room, read or watch catch up on the ipad. I also have took a spare bike to her house and everyday I would take myself out for an hour or so cycling, wonderful way to relax. I took her out daily in the wheelchair for a coffee or something and that was it. I also adjusted the heating during the night when she was asleep to winter mode and turn all the raditors either up or on. You need to think, this is not for ever, treat it all with a sense of humour and be laid back about it and just walk away when she gets nasty. Remember also you will have some jet lag so your own space will become a haven for you. A thought, does your sister have any carers coming in, if not worth talking to your sister about it as it takes the strain away from doing everything, including housework. Good luck from someone who is also going through it

A very difficult situation ...but good luck and if anything not nice said to you try to go with the flow and try not to take it to heart you and your sister are being good daughters..take comfort from that...hugs x

I assume that those of you caring for people still in their own homes have applied fir, and now receive, attendance allowance. If you are applying now, please get help to fill in the forms and list the worst events you have coped with.

There is a lot of help if you know how to access it. Alzheimer's Society and Age UK have loads of fact sheets available to download.