day care

[Lulu]

Hello, can I plead for advice?

We have been referred for 'enhanced daycare' and have attended the centre for a visit. Mum came across very well in the hour she was there, and it is now questioned why she wasn't referred for plain old daycare. There has been a lack of communication between all parties, leaving it to me to explain why we were there etc etc., and I feel at my wits'end this evening. We find out soon if Mum will be allowed to attend this centre. Incidentally, there were others there who I feel were FAR better than my Mum, though some a lot worse. Hard to tell in such a short time though.

She does not have advanced dementia, nor is it early. She relies on me for so much, would not survive alone. I ensure she showers, and she wouldn't change her clothes without prompting. She can hold a normal conversation, but never initiates one. Short-term memory is pretty bad, sometimes reduced to moments, long term is deteiorating. She will not leave her home unless asked.

At diagnosis, I was the one saying I would cope, no group, no daycare, no nursing home. Now, she attends her group, and loves it, and daycare is in the process of being arranged, perhaps. I now even see how a nursing home may be necessary in the future. Now I 'm asking for help, I'm made to feel as though I shouldn't be! Should I be?

Our children have really just left home for Uni, are drifting back one by one. I am concentrating more on my Mum than my children. She is a full tme job for both me and my husband.

I WANT to give up my life for her, she deserves no less, but what of my life? I was hoping to do both, but the people who have it in their power to help seem to be asking ME the questions, rather than taking some of the burden away, making me feel awful for wanting help

What am I saying here? I have no idea! I believe, from what I see, that Mum is definitely a stage 4, and perhaps stage 5 on this FAST scale. Or late early/early moderate. Are there any out there in the same stages? Am I just an incapable, complaining idiot, who should just accept it all and get on with it?

From a very distraught and depressed Lulu

 

[Amy]

Hiya Lulu

So sorry to hear you are feeling so bad tonight.

1) Of course you should be asking for help. You say how much your mum enjoys going to her group, so it is the right thing for her too.

2) You know that you are in this for the long haul; you need to pace yourself now. Get all the support that you can; it will enable you to care for your mum better.

3)

I WANT to give up my life for her, she deserves no less, but what of my life?

Would you want your children to give up their lives for you? I'm sure that the answer is no. Caring for your mum is PART of YOUR life, not the whole of it.

4)Being a mum and daughter is so hard at times. We want to do the right thing for all those we love, and I think end up guilt ridden because we can't keep everyone happy. And what happens to us?

5)

Am I just an incapable, complaining idiot, who should just accept it all and get on with it?

NO to all of these. You are a tired, hurt and caring person who is currently feeling overwhelmed.

My solution, Sleep on it. For me things normally seem better in the morning.
You sound to be doing a great job with your mum.

Take care,

Amy

 

[daughter]

Sent you a PM Lulu, {{{hugs}}}

 

[Jude]

Dear Lulu,

I totally agree with Amy. You need some help here and you are completely entitled to ask for and expect help, without feeling guilty or of being a failure in any way.

Carers always seem to put themselves last. To my way of thinking, this is totally wrong. You need to think of yourself first of all. If you keel over, then who is left to captain the ship? Without you the whole thing will sink.

Be kinder to yourself - you are doing a fantastic job. You are the Star here.

Jude

 

[Lulu]

Sorry about all that. I have seen Mum this morning, she is fine and says that she liked the group she went to yesterday. I get so annoyed because nobody seems to know what is happening, yet individually everyone is very kind and helpful. Life isn;t that bad, but I do feel that the time is right to get things set up before we hit any crisis. It will all turn out, I'm sure.

 

[Rosalind]

Before she became ill, if you had told your mum you would 'give up your life' for her, how would she have reacted? You say she is not distressed by going to the day care place. Again, in the past, would she have never wanted some time doing her own thing, without you present?

To keep yourself from getting as depressed as you are, you must have some 'me' time, otherwise you and your Mum will get into a horrible, interdependent downward spiral. Try all the help that is offered - some will work, some maybe not. My husband hated a 'club' that supposedly was a group of people at the same stage as himself, and dismissed them as a load of nutters who sat in a very small room, so that stopped. But he get visits from Alz Support befrienders who are great, and he enjoys talking to them and even, thank the Lord, will do tasks like clearing out the garden shed with one of his befrienders!

In January I, rather to my horror, made myself join a gym, and now go for short bursts of activity 3 times a week. This is seriously out of character, but then my shape was very very seriously out of what I would deem even remotely acceptable, and while it might not be the 'me time' I would dream of (would prefer to be on a tropical beach, with long cool drink) it has made me sleep better, and feel less stressed.

Take all the help you can get, and don't, like your mum at the day care, 'present well' so they don't realise you need it.

 

[Lynne]

Lulu,
Rosalind just said everything I was going to say (Thanks - saved me some typing!) so I've just posted to second & support her reply.

The longer you can help maintain your Mum's level of non-dependance on you alone the better, it's good that she can enjoy other people's company and time out of home. And if calling it a lunch group, coffee morning or whatever makes it seem more acceptable than "Day Care" or "Seniors Club", then just use whatever works!

Look after yourself Lulu, it's not selfish to do so, it's for everybody.

 

[Lulu]

Thanks. You know, I tell my children how I hope that they never have to deal with this, that I would want them to lead their own lives first and foremost. My Mum would say the same to me, I know.

Just the frustration. Have taken some time to accept it all, accept we now need a little more support in order for us both to have a life, but now having to deal with all these agencies making the process so much harder. Appointments made, people not turning up, mix-ups with notes, wrong information ...that is the problem. Were it not for the AS, I would have thrown my arms up in the air and said, 'forget it'.

I'll calm down. Take care of yourselves, everyone.

 

[Nutty Nan]

Lulu, don't give up your quest for help in various shapes and forms. It is a very long-winded, time-consuming, energy-sapping process, which often doesn't seem worth it (and on good days you wonder whether you actually do need that help ....), but it is better to pursue it now than wait for that proverbial emergency, when you won't have the opportunity to try out different things to see what suits you and your Mum.
My situation is slightly different in that I care for my husband, but I am working almost full time. If you had suggested to me 12 months ago that I would end up depending on the carers as much as I do now (4 hours every weekday, and our daughter pops in once or twice every day, too!), I would not have believed it. More so: one of our carers has become a real friend, which is a lovely feeling!

Good luck, and keep us posted.

 

[Lulu]

thanks to everyone. back on track again today -well, as much as we can be.

 

[Norman]

Lulu
I know just what you mean about giving up, don't
I have just won a 12 month battle with SS following a formal complaint.
I have got the care plan funded and a social worker allocated to us.
To complete now, waiting for thir reasons for SS not responding to telephone queries
The Crossroads carers that we have are wonderful and one of them is more of a friend now than a paid carer.
Lulu don't forget that our efforts can benifit others who maybe are unable to speak up.Don't give up.
Best wishes
Norman

 

[Lulu]

Norman. No I won't give up. It will all be OK in the end. I only hope that our SW stays with us this time, and not close our case after 3 months. Hope all is well with you -that sounds such a silly thing to say, but you know what I mean.

 

[currywurst]

Hello everyone. I am new to the forum although I have been reading the posts for the last wekk and they have helped a lot, thank you.

I thought I would add to this topic as my question is relevant here, and Lulu's post summed up some of the feelings I have at the moment.

Firstly a little about us. I look after my lovely mum who has AD and was diagnosed about 6 years ago. Although mobile she is unable to do most everyday tasks and is doubly incontinent. Although mum has speech, she chatters away but unfortunately although she knows what she is saying, I can't really understand what comes out, but I chatter back and sometimes I even manage to get it right! But she still has a lot of her personality that shines through and we have a good giggle most days!

So my question was who do we contact in the first instance regarding day care, and respite care? I presume the GP or do we contact SS direct? Also as mum has some savings would she pay herself or would she get help? I wondered if there was a limit on the amount of savings you can have? Also regarding day care. Would mum be able to go if she is doubly incontinent?

So sorry for all the questions. I relied on my sister to enable me to have the occasional day off, but unfortunately her mother-in-law has been diagnosed with terminal cancer and of course she needs to support her, her husband and family right now.

Thanks for listening

 

[Lulu]

We took Mum along to visit the second day care, and it was much better than I had expected. Quite a homely environment, lovely menu, friendly manager etc. Mum seemed quite relaxed about it all and agreed that she would like to try it out. (she would agree to almost anything though). We have agreed with our new (lovely) SW that she tries 2 days, starting next week.

Having now got what I wanted, for both her (in the hope she willl enjoy it), and for me (to be able to pick up bits if my life again), I now feel really bad. I am uneasy about it because the group was large, and people seemd to be sitting in their own groups chatting easily to each other (the odd ones were sat alone). I just know that Mum doesn't have the ability to take the initiative, and to be dropped off and expected to find her way around is a tall order. I may be wrong, but I feel this just isn't the right thing for her.

Can anyone share their own experiences about the organisation of Day Centres. Who will keep an eye on her in such a crowd? Who will give me feedback, and tell me how she's getting on? Perhaps I am worrying unnecessarily, and it will be fine.

Thank you everyone.

 

[Lynne]

Nothing in life is guaranteed

1/
Having now got what I wanted, for both her (in the hope she willl enjoy it), and for me (to be able to pick up bits if my life again), I now feel really bad.
2/
I am uneasy about it because the group was large, and people seemd to be sitting in their own groups chatting easily to each other (the odd ones were sat alone). I just know that Mum doesn't have the ability to take the initiative, and to be dropped off and expected to find her way around is a tall order.
3/
I may be wrong, but I feel this just isn't the right thing for her.

Can anyone share their own experiences about the organisation of Day Centres. Who will keep an eye on her in such a crowd? Who will give me feedback, and tell me how she's getting on?

4/
Perhaps I am worrying unnecessarily, and it will be fine.


Thank you everyone.

1/
Of course you are nervous, you love her and want things to work for her. You're allowed to be nervous, we'll let you!
2/
You know what Lulu? You sound just like a young Mum sending her little girl to school for the first time. But the difference is, you do HAVE to leave your baby to the tender mercies of the teachers and other kids; with your Mum, you could probably stay with her for a couple of hours on day 1 & day 2, and help with the 'integration' of the new girl into those groups "chatting easily" together. Every one of those people was a new girl/boy once, and I expect the staff are used to matching people up as regards temperament & talking skills, but I don't think they would mind an extra 'helper' for your Mum's 1st few visits.
3/
"I may be wrong" - we're all wrong sometimes, and if this is one of those times you are no worse off than before. No one will blame you for trying, or for changing your mind if your Mum's not happy there. But "Mum ... is fine & says that she liked the group she went to yesterday", so it's not a totally new thing for her to deal with, so it's worth a try.
4/
You could just be right! Yippeee!


I hope it goes well, and that by next week you BOTH feel better for the break.

Best wishes

 

[Lulu]

Lynne, I know how I sounded, because that is EXACTLY how I felt. OK, so if she's in the wrong place we can change it, no harm done, I know, but my overriding need is to know if the Centre will tell me if she doesn't fit in, rather than leave her to manage because it is giving me the break. Mum is exceptionally good with her public face on. I want it to be for her benefit first and foremost, my needs come after that. But yes, I would know if she were unhappy -just the first step, yet again, into the unknown, trying not to cause her any pain.

I do. I sound pathetic, but if anyone does have any experience of Day Centre routines, and how they integrate their new intakes, I'd like to hear. These are big changes, and they are coming thick and fast at the moment.

 

[Lynne]

I'm sorry

Lulu, I'm sorry if I hurt your feelings. My post was meant to be a bit of gentle teasing, not criticism, and I would never, ever call anyone here pathetic.

That's the trouble with emails (and similar) isn't it - there's no body language or facial expressions to add "mood" to the cold words. Please accept my apology.

 

[pammy14]

Hi

My sister Win goes to Day care once a week. She always says she doesn't want to go but when the taxi comes she seems OK I have never been or been invited to go but I have spoken to the organiser who says shes OK. She cant remember what if anything she has done and as she has little or no speech i dont think she can talk to anyone. Dont feel awful about your Mum Going. it gives you a few hours rest which I'm sure you need.

 

[Lulu]

Lynne, you haven't upset me at all, in the slightest -I am feeling distinctly jaded as Mum seems to change day to day and so much is happening. Pammy, thank you too. It'll be alright, I'm sure.

 

[Margarita]

Lulu

I new to this site to.

I know how your feeling about your mum, I two was so unsure about mum going to day care, mum go to AZ day care 2 days a week its small, at first mum did not seem to mix, but now she so much alert & love to play bingo & when she go in to a care home for a week or two so I can have rest she is even more alert & are relationship is more healthy & I do not feel so burden down.

When you say day centre do you mean AZ day centre?

I do not know if you have children? but if you think of it like when you first take your child to school ,you feel those same worries about if they will mix ,.the relationship changes really you’re the mother now to your mother and change I find is hard to accept it will come ,but it does take time

Once I cried when mum come home from day centre as one day she brought home a paper plate, she had drawn something on it ,it may me cried because I thought of my children when young how they use to do that & hear is my mother doing the same thing , try not to worry easier said then done I know .

From what I have read above you have found a good support network. I have been looking after mum for 3 years now & got advice from no one felt like I was hitting my head against a wall trying to sort outside help & trying to find information about what was happening to mum my feeling towards her was I the only one that felt all those mix up emotions, the guilt of wanting my life back & the pull of love that I felt towards my mum .

I found the USA site first just 2 weeks a go , before this one it amazing & am so relived that people I do not know have felt the same way ,thank god for technology the internet for helping us all link up .

I find I can not organise my self with getting out in the evenings someone to look after mum ,then still having to get up early 7 days a week I find that stress full in it self & I have 3 teenagers at home so when mum go to day care I get some time alone for me , if one of my kids don’t need me to go somewhere with then