do you recognise this scenario?

[Jude]

Dear Lulu,

Sometimes it really does feel like a meaningless occupation doesn't it? All those trips and activities you provide, which are so instantly forgotten by your mother. The thing is, that you will remember them and I think that is a pretty important aspect to consider.

Good luck with the Care Home search too. I felt awfully guilty when I had to place my parents in care a few weeks ago. I don't feel that way any longer because they are getting such incredibly good care and are so happy and when I visit them we are having a really wonderful time together.

Best wishes,

Jude

 

[Lulu]

Thanks Jude. I don't think I meant 'meaningless' in the sense of being a waste of time. I want Mum to enjoy life as much as she can, but she doesn't seem capable any more of enjoying anything very much because leaving her home and doing anything causes her so much anguish and stress. I want to make it as right as I can because as you say, I shall have these memories too. It hurts so much to see her like this ....

The visit is almost at an end, and I believe it has succeeded in that Mum has been unable to hide her illness. We are getting the same reactions that happened on holiday -Mum becoming very confused, can't follow things, becoming more and more stressed, sulky and very sharp with me. Coupled with everyone's advice here following the holiday, I can now see more clearly what is happening and why it's happening. Will hopefully get chance to speak alone with Aunt tomorrow ...will let you know how it goes.

I'm happy for you that your parents are in such good care. Thanks again.

 

[Lulu]

The visit is all over. I travelled over 200 miles to put all this into place for Mum and now feel exhausted. In fact I am here in tears. My aunt and I only managed a few moments alone during which she admittd that she (and the rest of the family) couldn't really believe what I had been telling her. She was in tears herself as she told me how she had found Mum, saying how sad it was. She has offered to ahve Mum stay with her for a few days later in the summer when we need to be away again, but Aunt is infirm herself and thinking about it, she would be worn out having to care for Mum. I begin to think that it's all gone beyond that, and I know any such saty would make Mum a lot worse.

Mum has hated every minute of this visit. It has put her under a great amount of pressure, and in an attempt to disguise all her shortcomings, she has critisised everyone and everything. She is worn out. I am aware more and more that her illness has progressed, and tonight I feel depressed. I should have known as dad was dying that she wasn't understanding what was happening. I put her first at the time, thinking it was the right thing, but he died without us there. She had no idea ..and I cna't change itnow.

Sorry, bur I feel so upset tonight.

We spoke to Mum an hour after returning her home -the visit had all been forgotten.

 

[Brucie]

Hello Lulu

No, this really isn't a nice stage to be at, but you are doing all the right things, for all the right reasons, so please don't feel bad about that.

There comes a stage when someone has to take over the reins as the person with dementia can no longer manage alone. You have reached that stage, and you have done the hugely difficult thing of taking command.

Never forget that this is for Mum's benefit, even if she can't appreciate that [and she actually may], and you feel bad about it.

This is the stage where they feel most pressure and the best we can do is to reassure them and make sure as few things cause them confusion as possible.

For my part, I'd let your Aunt have Mum, for as long as she can manage, and as long as it does not put Mum in jeopardy in any way. In that way your Aunt will appreciate the enormity of the problem, and that should put another person not only in the know, but also firmly on your side. It helps to have someone there with you.

Please don't dwell on the past, as you say it is gone now, and you have more than enough to concern you for the present and future. Dad will have understood. Believe that.

Lulu, this is a difficult path you have embarked upon - that we have all embarked upon - so please do understand that you can only do your best, which is a lot better than anyone else could do for Mum. She will know that you are helping her even if she can't show it.

All my best wishes.

 

[Sheila]

Dear Lulu, oh how I can empathise! My Mum had a lovely younger sister, she too has poor health (still does and I am now doing things to help her but that is another story) Just as you say, the visit was a toughie, BUT it cleared the air and confirmed to all of you what the problems are/will be. My Mum used to give us all a bad time when she was pushed and couldn't work things out. She went on the defensive and, for the throat of whom ever was in the firing line. Same scenario? My aunt is lovely, but no way could she have coped with Mum, so what we did was, she came to stay, not every weekend, because of her own health, but as often as she could. They had "quality time" together. She went with my Mum to a Crossroads Monday lunch club. To my Mum, we said this was just a retired peoples lunch club and it was nice for them to go out together. In reality, it gave me a break, Auntie felt useful, but Crossroads held it all together!! Mum went every Monday whether Auntie went or not, but of course forgot most of it by the next week. I am so relieved that now the rest of your family understand about your Mum's illness. Regardless of whether they help or not, at least you don't have to pretend it's all OK anymore. With regard to your going away, why not arrange a respite for your Mum? Although we never went away as such, apart from a one nighter!!??!! (We have a disabled son too) this was what we did. I rang to see if she was OK, every day the first time, then as I got to trust them, just a couple of times. When there was a problem, they rang me. (And that's another story too as Mum played them up dreadful once!!) my Aunt also had the number, but she actually preferred to ring me as it was so upsetting for her she said to ring the home. It is not like being at home, but it gave me space to catch my breath and carry on the caring. My Mum is gone now, it is a year tomorrow. Seems like yesterday. You are doing your best my love, we all do who write on here, writing is proof of our commitment, I do sincerely feel for you, lotsaluv and a hug, She. XX

 

[connie]

Dear Lulu, you say you are in tears, please make them healing ones. You are doing a fantastic job with Mum, and I am so glad you have let others see life the way it is for you.
Mum, and others in her situation, will always forget. You will always rememeber.
Just do what you know in your heart to be right, right for Mum, right for you, after that the pieces will drop into place.
We can only sustain the juggling act for so long.......... Take care, God bless, Connie

 

[Jude]

Dear Lulu,

It's only natural to feel depressed and exhausted after the stress you've been through this week. All the extra organisation, driving and just keeping it together are very tiring.

Still, you have a very positive outcome. Aunt is firmly in your court now and can back you up with the rest of the family.

You've done a wonderful job.

Jude

 

[Lulu]

A night's sleep does wonders of course ...Brucie, I do try to live for today,not think of the past too much, but sometimes it hurts doesn't it ... Thanks for replying, because I needed that before going to bed last night.
I shall leave the decision of Mum going to her sisters until nearer the time. I need to start looking into respite/care homes, but finding the opprtunity has been hard. The DN comes tomorrow and I have a lot of questions for her.
Sheila, Mum has been attending a newly-formed lunch club, held once a month, run by Age Concern, and should have attended this week. But when I asked if she could go along with her sister, they said not. I'm not sure this Club is suitable really, becuase I am trying to find 'slots' of time-off if you like, but Mum relies on her neighbours going along as her 'support'. In all, it seems to cause more stress to her, which is why Day Care would now seem to be the right option for her. Somewhere where there is the correct level of stimulation for her, with people who understand her condition. What do you think?
Brucie, Sheila, Connie, everyone ...thankyou. I know I go on, but I know I take longer than some to come to terms with things, to understand what is happening. There is so much happening in my own life too that everything gets in a terrible muddle ..

Sheila, I shall think of you today.

 

[Jude]

Dear Lulu,

Day Care sounds like a good option under the circumstances. Your CPN should be able to arrange this and perhaps for more than one day per week.

Jude

 

[Lulu]

Thanks, Jude. I'll let you know if we are able to get Day Care.

Mum had another visit today, completely out of the blue, from a relative living on the other side of the world. I didn't tell Mum about it (I only found out just before too), as she was still reeling from the weeks visit from my Aunt.

The visitors arrived, and had obviously thought very carefully about the situation beforehand. They had a cup of tea, talked of old times, (whilst I was able to return home for a few hours), and then left. Mum really enjoyed herself! I want more visitors like that!

Thank you to everyone.

 

[Sandy]

Dear Lulu,

While it sounds like it was difficult at times, at least your aunt now has a better idea of how much support your mother needs. This must be a relief in that you shouldn't have to deal with too much unhelpful second-guessing in the future (at least not regarding the basic situation). Even though you didn't get much time to talk to your aunt alone, you could always ring her up for a more "relaxed" discussion of her preceptions. It might even be helpful to have that info before the meeting with the CPN on Monday.

I think it is definitely worth exploring the issue of a day centre with the CPN. Also, since your mother enjoyed her short visit today so much, maybe she would appreciate a weekly visit from another source. This could be a paid "visitor" such as a care assistant coming via social services or a charity such as Crossroads. This would give you a regular weekly slot for a break and your mother might enjoy the chance to have a regular visitor who tacitly knows her levels of functioning and doesn't make too many demands.

I mention this option only as it could augment a day centre and could also be used if there is a long waiting list for the local day centre. Also, if you have to be away in August and finding respite proves difficult, daily (possibly morning and evening) visits from care assistants could be a reasonable alternative, depending on your mother's reactions.

Perhaps one of the most difficult questions to ask is how much insight do you think your mother has at this point into her condition? Her behaviour on holiday and during your aunt's visit indicates that your mother knows that something is not as it should be. When introducing something new into the routine, like a day centre, visits from care assistants or respite in a care home, it's helpful to get a sense of how the person with AD would respond the change.

For example, when we set up the weekly visit for my father-in-law from a care assistant, to give my mother-in-law a break, his levels of insight were so low that there was no need to explain that the visitor was there to look after him due to AD. He seemed happy to accept a visitor to keep him company while his wife popped out to the shops, so we left it at that.

Hope your meeting with the CPN goes well. You really are doing a great job.

Take care,

Sandy

 

[Sheila]

Dear Lulu, yes, Age Concern are really only suited to the elderly. My Mum attended Crossroads for almost two years but in the end got herself "kicked out" because she became agressive and tried to leave the building etc. I agree with Jude, day care is the next step. It will be secure, the staff will be trained in the needs of A D sufferers and it will be a safe haven for both of you.

Y'know, the parallels on here as so strange. A few months, notmany, before Mum had to come to live wiith us, we had a visit from a friend in Australia. Although Mum was a bit on the vague side, the visit was a great success and they were lovely to her, strange innit!!?

Do try to get all the help you can, the more you find early on, the more you have in place for the times to come. Love She. XX

 

[Sheila]

Lulu, forgot to say, thanks for your thoughts, been a heavy, strange kind of day. Love She. XX

 

[Lulu]

Yes, I was thinking of asking the same care services if they could up the visits. Presently, mum is taken for a long walk once a week. The Carer thinks Mum loves it, but Mum always pulls a face beforehand 'oh well, if i must' sort of attitude. She forgets about it immediately of course, and I find I can get away with almost anything. She is very compliant on the whole.

I'm really not sure if she has insight. If anyone discusses her health, she says she's fine, but adds that she may have parkinson's disease -then turn to me to ask me 'do I' ? At diagnosis the consultant asked if I thought she should be told, to which I replied yes, as I didn't feel it would make much difference. I then discussed it with her, and she just accepted it. As if it hadn't sunk in. I don't think she's aware very much. She believes she still does everything for herself, or most things, and blames inability to shop and cook due to being a widow now. She says she doesn't like shopping as it isn't the same shopping for one. Yet as you say, she suffers stress when put under pressure to perform, so as to appear capable ...so I don't know.

If they think Day Care is possible, I know that if I ask Mum if she'd like to go she would become very defensive, and tell me she doesn't need such a thing. But if I just told her she was going, as if it were all very natural, I think she would. She never asks questions ..just accepts.

Yes, our relative was from Australia too. She left with a bemused air, telling me that Mum was absolutely fine ..wondering what on earth I'd been telling her! But they had tea, reminisced, and she did all the talking. All Mum had to do was sit there, say yes and no etc etc.

It must have felt strange yesterday, Sheila. I can see how, afetr putting in so much love, time and effort into one person, it must be devastating to lose them. Thank you both. Will let you know how we get on.

 

[Lulu]

Just thought I'd let you know that the DN has been and we are to contact the Social Worker regarding more support (day care etc), and she has helped with ideas for respite, where to begin and all that. She tells us that respite care normally has to be booked in yearly blocks -is that everyone's experience? Here was I thinking I could just choose when and where!!!

So, waiting now for the SW to get back. Thanks everyone.

 

[Jude]

Hi Lulu,

It's always great to have visitors who understand the situation. They really give you a big lift.

Yesterday my cousin came to visit. Her Mum [my mother's sister] also has AD and is in a NH, so she knows the score completely too. We took my parents out to a beautiful little pub for lunch and had a wonderful few hours sitting in the gorgeous garden in the sunshine. Mum and Dad thoroughly enjoyed it which made the day so worthwhile.

Cheers,

Jude

 

[Sheila]

Dear Lulu, I think you are right there, just taking it as normal seemed to be much easier than trying to explain or ask permission with my Mum too. I used to say the day care was to help teach her how to cope with her memory problems. She then turned this into her "going to school", she acccepted that without any problem most of the time. Love She, XX

 

[Sheila]

Dear Lulu, just read your other post about respites. I think what your SW means is rolling respite. We did that for my Mum, it means that you know when the next one will be etc. Having said that, until you have tried one, I can't see that it would be fair on any of you to book a years worth in advance. This also only applies to respites booked through SS. If you book yourself, through the private sector, provided they have a bed and will take them, you do the choosing. Love She. XX

 

[Lulu]

Dear Sheila, We left it with the DN that I should contact the SW, which I did immediately -but have only left a message with her as she wasn't in. I feel strongly now that Day Care would seem to be a very good starting point, and then arrange other things around that. It seems we may well be on the wrong side of the border to get the Day Care which most interests me. Could be that her surgery is one side, her home the other, which could jeopardise her chances.
And although I shall talk to the SW about it, I think I shall first of all ask at our local Abbeyfield as to how we stand regarding respite etc. I would want to choose which she went to. When we go away for 2/3 days in Sept, my aunt has offered to take Mum. Shall leave that decision til nearer the time.

Mum was here for her meal, complaining more and more about her lot. I just can't seem to find any strength anymore. I want to go away and hide in a corner. I am trying so hard for her, but she is never satisfied. She has the most wonderful neighbours who have taken her to heart, who call in every day, but she sees only the negatives, and ensures that I know her dissatisfaction. My 'children' are all home at the moment, and as much as they try to love grandma, they are also finding it very hard. They find her very differnent.

Perhaps it's the heat, but I 've had enough tonight, round and round in circles. I am full of admiration for everyone here.

 

[Lulu]

Following on from the meeting with the DN yesterday, I tried to contact the SW who came to assess Mum at Xmas-time. She wasn't in and I left a message. Someone from the office have now contacted me and I am absolutely amazed. He took details, asked what I wanted. He had never heard of Mum's Consultant, and never heard of Aricept. He was going to look it up in his book! Then he said Mum would need to be reassessed, though couldn't say who would come, or even when as everyone is really busy. I have to say that I have no confidence at all folowing this call. I thought we had a SW. Should I write to the Memory Clinic myself? Should I contact the Day Centres myself?