Looking after Mum

I did the same thing, came back from the Middle East to help care for my mum. My sister tried her best and called almost everyday but she also had a full time job. We tricked mum into going to the doctors for an Alzheimer's diagnosis. She thought it was just a check up for her high blood pressure. That was a turning point as social services and medical staff were brilliant in sorting the extra care she needed and arranged for care workers to call in several times a day and arrange all of her medications, which was just as well as my sister fell ill with cancer and would not have been able to cope (she is well and recovering now!). Might be a good idea to see what care your Mum may be entitled to receive as that will ease the burden on you

My mum was a bossy person who mainly talked and didn't listen, we didn't get on, and she used to say she loved me but didn't like me. When she had a stroke - which meant she could not talk or walk, we had a much more compassionate relationship.
Her eyes would light up whenever she saw me, and I became the one who did all the talking. For the last 6 years of her life, what I felt was a mixture of love and compassion, as well as outrage that she had had to suffer like this, and none of what went before mattered anymore.
When she died, everything felt complete - no regrets

My mum has dementia (diagnosed) and last year my dad found as he is physically disabled he could not manage with her despite having carers twice a day. He asked me to find a home for them. I really struggled with this but it was the best thing I could do. They are still together. My mother is happy in her own little bubble and loves it there. She is far more with it than she was at home as she now has stimulation. My dad is happier as now when she wanders off there are people to there who can cope. Also there is someone there to pick her up when she falls. They are 95 and 96 and a lot fitter now than when they were in their bungalow. I used to dread them ringing me day and night but now I go and visit just for the pleasure of their company!

My mum died of dementia last November. While she was in her sheltered bungalow I did everything for her plus arranging carers, cleaners, meals, shopping, social life, paying bills etc. A year before she died, my brother, the apple of her eye, moved her into a cheap and below-par care home without consulting me. She was still able to get out independently at that point. Up to then, she was very much against going into a home and I felt it my duty to uphold her choice. She couldn't possibly have understood the life-changing "decision" she had made. Once there, she very quickly lost the ability to walk, broke her arm, and complained of rough handling. Of course I reported them but my relationship with the home was rather strained after that and I now don't speak to my brother.

Oh Draonfly46 - That's lovely

Sorry I meant Dragonfly46

Gracesgran, I'm afraid you are right about too many professionals.
I have heard so many times of doctors/social workers, etc. saying for example, 'Well, if she can't remember to take her tablets/how to use the microwave, etc., all you have to do is write it down for her/phone to remind her,' etc.

Even if they've 'been on a course', no conception of the practical realities - I.e. someone has to remember to look at what you've written, and remember after turning their eyes away, to do it!
Equally, to remember what you said on the phone for the time it takes to do whatever it is.

And what can be particularly frustrating about these clueless professionals, is that because they ARE professionals and you are not, they think they must know better than the one who sees the person in question all the time.

I'm reading all your comments. And thank each and every one of you. Your insights and advice have given me strength.
I'll be back on here soon and talk about how it's all going with my Mum.
Keep commenting as everything I read helps.
Xx

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.

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

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

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.

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

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

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.

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).

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.

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.

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.

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

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

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.

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 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!

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.