Lost, any help appreciated.

[wjoanne918]

I am having an all time low day today. It seems as though mam's gone from great to nightmare in a week. I cant believe what's happening at the moment, mam's gone from being able bodied, laughing, joking talking clearley to incontenant in the space of a week. My dad is mam's main carer and he really cant take anymore, I think its time for mam to go into care but i know dad doesn't want this but i'm so scared of losing him, he has done an amazing job looking after mam for the past 4 years, full time with sometimes little or no support. I spoke to the CPN today and we think that mam may have picked up a bug which is possibly why the incontinance has started, we took samples today and await the results, i dont know wether to wait for the results before making final decisions i just dont know what to do, the thought of mam going into a home scares the life out of me, she's 58 years old!!! its so unfair, i wish i could talk to her and ask her what she wants, that sounds silly because i know for a fact she wouldnt want to go into care but she wouldnt want to be putting my dad thorugh all this either, catch 22, vicious circle, double ended sword, this situation is all of theese rolled into one.

[Sue J]

Hi wjoanne918

Sorry to hear your Mum has taken such a downturn. It sounds very much like she has picked up a bug to have caused such a drastic change. I would say try not to rush to decisions whilst your in a crisis but try and see how she responds once the suspected bug is treated. When she is a bit better and you're all calmer you may feel better about making difficult decisions. Can your Dad get some help and support at home in the meantime?

Take care and hope she responds positively to treatment.
Best wishes
Sue

[wjoanne918]

Thanks Sue,
we have a fab CPN but other than that there's not much support in our area, the local ALZ society runs a befriending service which gives him 2 hours rest bite a week. I have to go to work tomorrow and all i can think is that I souldnt be leaving him to deal with this on his own, I feel so guilty, your right about making decisions at the moment, we'll ride this bug out and see how we feel then. Hate days like today. Thanks for replying.

Jo

[Sue J]

Hi Jo

It must be so hard for you. Would your Mum accept an outside carer coming in, I'm just wondering if it's possible to get an agency to give your Dad help for a few hours during this downturn, especially with the addition of the incontinence which can be so upsetting and difficult to deal with. Maybe your CPN could advise if you could get retrospective funding for it? Don't know how things work in your area? Just some thoughts and hope things improve soon.
Best
Sue

[lilac43]

Hi Jo ive just read two of your threads the memantine n lastest one. Sounds so like my situation here, My husband was put on memantine towards the end of last year we was told if he tolerated the drug he will be on it permanatley and were hoping for the same reaction we had when he was started on aricept some 4 years ago ( His deteriation slowed down). Not the case this time, I saw no slowing of the disease and 6wks ago it seemed just overnight he dramatically declined, incontinence,stopped eating , speech incoherant.Even thiugh he didnt seem ill. We have been to GP and he has a chest infection which isnt shifting, back at GPs later today and im hoping if we can get over this infection some of what Charlies lost will return but I fear im kidding myself which is to scary to think about. For the past few years ive said right we must do everything we want to do whilst we can as we dont know what next year will bring. Looks like this is that year but its not slowly crept up its smacked me in the face!

Thinking of you and the family Linda x

[wjoanne918]

Hi Linda,

What dosage memantine is / was your husband on? at the moment the CPN is telling us not to stop it but drop it back down to 5mg because they believe her incontenance is due to a stomach bug that has been going through my family at the moment. I dont know, the GP and Hosp are taking ages to get us the results of the sample I took in just so we can confirm it is a bug, but if its not I want to stop the Memantine and stick with the Rivastimine and Queitipin and try and get mam back a bit. Thanks for your reply, hope things pick up for you, good luck Jo x