I don't know what to do?

[pescy]

This is my first time.....I am 29 and my mum is 60.My mum was diagnosed with Alzheimers early this year,she first started to lose her memory five years ago.She lives with her partner-he works all day mon-fri and plays golf at the weekend.I see my mum twice a week at the most,as i live an hour away,don't always have a car and have two sons under five.My mum's mother lives abroad and all other family live four hours away. I really don't know what to do,as mum's partner has started to say he can't cope anymore and threatened twice to leave.She can't cook or make a cup of tea,gets confused etc.We tried to get a helper in at lunchtimes,but mum wouldn't have someone she didn't know in the house.I feel i aught to look after her,and feel pressure from rest of family to be doing more.I don't know if i could cope with mum and two children! I feel i'm being selfish,i start a degree in september and feel perhaps i shouldn't be doing it.
I don't know what to do next,who to contact for help? Have been told by doctors,there is nothing more they can do.Mum has tried two memory tablets and they didn't do anything.I think mum has mixed dementia as she has many of the factors.Sorry if i'm going on a bit,but the whole situation is getting me down Can anyone suggest anything,or anyone in the same boat?

 

[Amy]

Hiya Pescy,
I can identify with your situation, as I was in something similar about 10 years ago. Your children must be your priority. I would not think it a good idea to move mum in.
Mum's partner has to make his mind up; I told my dad that if he wanted to leave, then go, and leave me to sort things out, if not make the decision to get on with it, and do the best he could. Thank God, he found the strength to do the latter. The threats to probably leave do not help you though. I did tell my dad I would understand, and that it would not change my feelings for him.
Things that may help
1) Respite care
2) Attendance at day centres - maybe you staying with her to start with.
3) Care in the home via Social services or voluntary agencies.- maybe be introduced whilst mum's partner or you still in the house, then partner can start to leave once relationship established.
4) Support of CPN
I am sure others will come up with some ideas.
Welcome to TP. You will find that everyone is very supportive. Love
Helen

 

[connie]

Hello Pescy,

So sorry to read of your problems. Amy has given you some very good pointers to start, but I would add that on no account make any rash decisions about looking after mum yourself.

With two small children to cope with you would soon go under, and that does not help the situation. Yes, talk to mum's partner, he is probably frightened and confused himself, especially if he thinks he will have to shoulder the problem alone.

Be there for him, and then maybe he will be there for mum. (Hope you get my drift)
Thinking of you, let us know how things go.

 

[Amy]

Hiya Pescy,
Me again. Just reread my post, sounds a bit harsh (I was at work at the time). Connie is right, both you and your mum's partner are in a really tough place at the moment; maybe if he feels that you are pulling together, he may have the strength to face the future. Throughout mum's illness, I've found that it takes dad a liitle time to adjust to the changes - he denied what was happening as long as he could.
Bye for now.
Love Helen

 

[dmc]

hi pescy

you are not being selfish your experiencing the guilt monster that accompanies this flamin disease,
please dont put your life on hold, get the help everyones suggested, connies right you'd never cope with two children and your mum.
im not quite in your situation in that my dad is willing (with help) to care for mum, but its still not easy.
we had to have mum admitted to hospital so the situation was taken out of our hands, has your mum seen a consultant, im sure theres more they can do to help!
good luck please let us all know how you get on
best wishes

 

[mel]

Hi Pescy
I look after my mum....she's been living with us for 2 months now
My kids are much older....17,15 and 11.....if they were the ages of your kids I certainly wouldn't be able to cope..my kids can share the workload and I still find it hard at times!
Your mum would have understood....and yes, I think your mum's partner is frightened....with your support he may be able to cope
Love
Wendy

 

[pescy]

Thank you all loads-you've made me feel a lot better and not so guilty.Amy,i don't think you were harsh at all! I rang mum's partner last night and asked him to make a decision(sympathetically,mind)He said he didn't know yet whether to stay or go.I think he just needs a break.He had asked mum's mother abroad,if she could have mum for a month!(she's 80) She said no.So, i said i would have her for a bit(trying to be supportive/understanding!) I rang social services,to get someone to go round and assess mum's situation.I told mum's partner,and he said she would probably run out of the door!(doesn't want strangers in the house) Y'know,everytime i try to help,i feel i'm hitting a brick wall.
Did anyone else find that the "memory pills" didn't work?
Thanks again.
Wish some of my family were as understanding and supportive as you guys

 

[Amy]

Hiya Pescy,
I know the feeling with the brick wall!! Sometimes it seems as though no matter how hard we try we are still in the wrong. Can you be there when Social Services go round; I know it could be difficult when you have little ones, but it may help keep mum there and help mum's partner. I tried to be at meetings, if not I would find dad might not have asked the questions I wanted answering!
Love
Helen

 

[pescy]

Yes Amy(or Helen?),i'll definitely be there when social services arrive.Actually, i arranged before,to have a carer go round at lunchtimes,but unfortunately mum didn't like having someone she didn't know in the house.I thought perhaps,if someone comes in and assesses her situation,she might be persuaded that she needs help.....

 

[Amy]

Hi Pescy,
Unlikely to be able to persuade mum that she needs help. She maybe unwilling to accept her condition or just unable to do so. In her mind she is probably still doing everything that she has done in the past. Maybe the help could be to 'support her partner' because he has been feeling tired, or just a friend of yours 'who needs some company'. Sometimes white lies are necessary!! Maybe better just to say 'This is what is happening', than giving mum choice.
How long have mum and partner been together? Is it a well established relationship? Talk later.
Love,
Helen

 

[Lucille]

Did anyone else find that the "memory pills" didn't work?
Thanks again.
Wish some of my family were as understanding and supportive as you guys

Hi Pescy
Exactly what 'memory pills' was your mum on and for how long? You said in your first post "mum has tried two tablets and they didn't work" Was your mum's GP supervising these? Or was your mum under a CPN? (Community Psychiatric Nurse). I only ask because my mum has only been on her Exelon since the middle of May - we've just had our first review and they will put up the dosage in a couple of weeks. She is taking two a day. In any case, and with my limited knowledge of medication, they only slow down the progression of the disease - they are not a cure (unfortunately) and symptoms might not be as pronounced. For instance, my mum seems more 'with it' and has more interest in life, but still forgets what day it is, and repeats things.

I hope you manage to gain some help with your mum and that her partner helps you out. For sure it's a difficult one and is a situation I am familiar with! I've also put off continuing an OU course I was doing whilst I "watch and wait." Could you defer your degree to a later start date, when you have a better idea of support and things are a little clearer for you?

Post again soon and let us know how you're getting on.

 

[HLon]

hi Pescy,

I resonate with Helen's suggestions as to how you could present the introduction of a carer or some form of help. I think we had to use a gentle and diplomatic combination of where mum did recognise her own limitations (tho' that's of course also where she feels most vulnerable and threatened) and where my dad needed help.

My mum still talks sometimes as if she is doing the carers a favour ie providing an occupation for them! (I think she came up with that, not us) - same sort of line as Helen's idea that she'd be doing a 'friend' a favour. Or you could present the situation as both of you getting to know someone who'd like some employment, Another thing to try, if your mum accepts the carer's presence, is to empower your mum in asking her to show the carer round the house, or where the washing or garden is, or something appropriate that you know she can do.

Also, for ages we have had a 'shopping lady' who comes and helps do the supermarket shopping. Obviously she increasingly does the shopping, as it were, for my dad, but it's been a great sustaining task over the past few years for my mum, so she still feels as if she has some form of control in this area (even tho' my dad leaves the list in an agreed place for the carer).

I hope you can negotiate a good balance for yourself, and your mum and that her partner can share with you what he's afraid of and where he most needs help. It sounds like you will best be able to help everyone - your children, your mum, her partner, your self - if you can offer care for your mum when you have the energy eg agreed periods of time, rather than on a constant basis - that would be a gift to her and others in itself.

love, Helen

 

[pescy]

Hi Lucille,mum tried both Reminyl and Aricept and was prescribed them by her phychiatrist.There was no change at all to her behaviour etc . The thing with mum is, so far her deterioration has been fairly slow and gradual,i know it could all change,and she is getting worse.I could defer entry for my degree for a year.The only thing is,it's taken me song long to come to the decision to go back to college,that i fear if i don't go back now;i never will.Plus-i don't know how long mum's going to plateau for,before a dip.I could be waiting and watching for years! I think i shall give it a go,and if it's all too much,i'll see if i can leave and return at a later date.
Is your mum in the early stages ?

 

[pescy]

Hi Amy,
Those are really good ideas,i'm going to go with the "partner needs some help,is tired" She isn't bad enough(or too suspicious) to fall for the carer is a friend etc.
Mum and her partner have been together for about ten years.But it's always been a tempestuous relationship,and not a particularly good one(it's all v. complicated!) He's apparently told my grandmother,that there is nothing there anymore.Infact, just before mum started losing her memory,they were splitting up all the time,neither of them were really happy.I think they were together,because they couldn't make the final break.Of course,now mum can't remember those feelings and still thinks she's really in love with him(maybe she is,who knows ) Sorry,am giving you my life story here .
I don't know what mum's partner will do,there are a lot of mind games going on(can you tell i'm not his biggest fan?) Everyone in the family is falling out with each other,because certain people feel others aren't doing enough...grrrrrr
Anyway,thanks for all your help,sorry for going on...

 

[Amy]

Hiya Pescy,
I asked the question, so please don't apologise. It is a very tough journey mum and partner are starting on - even some of the most devoted people do not feel that it is a journey that they can make together. Try and not fall out, there are enough difficulties to face, without that as well. If the relationship is fragile, you need to have some contingency plans - never to early to start looking at residential care homes - just in case!
Love,
Helen

 

[Margarita]

I got my mum to come around with the idea of getting carer in , I told mum it was for me I need the carer in to help me .

I just like to add that my youngest child was 15 when my mother moved in.

I know you love your mother, but to move her in while your children are so young would be the wrong move your end up having three children. Your mother may end up getting jealous of the attention your giving your children get angry with them as this use to happen with my mother your going to have to take your children to school leavening your mum alone so have to organise a carer

Then what about you YOUR life your end up tormenting yourself about what you could of done if your mum did not live with you, your end up getting frustrated.your stress level is going to go in over drive , what does your husband or partner say about all this ?

 

[pescy]

Hi Margarita, My husband would willingly let my mother stay,although i know it would put stress on our relationship,because i would be v.stressed all the time.I know deep down that i wouldn't be able to handle it,and also my mum wouldn't want to put on me.But, sometimes you just need to hear from other people in the same boat, and to make sure you guys don't think i'm being selfish! You know,i've found my two boys quite hard work,so we decided against anymore children and you're right,if mum stayed it would be like having three !!

 

[Margarita]

and to make sure you guys don't think i'm being selfish!

Oh I know that’s why I just love TP it show you that so many people out there share those feeling of not wanting to sound selfish , it teaches you that sometime you just have to be selfish and there nothing wrong with that . I even got the book Selfish pigs Guide to caring.

I feel there a no win situation if you don’t look after them , you do look after them , if you put them in a care home , leave them at home and you end up running up down to see them , your still going to feel those same emotion .
You just can’t run away from it , its there its got them and all we can do is support each other TP