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

[lilac43]

Hi Jo
Charlies on 20mg but not in a single dose its 10mg breakfast and dinner, I dont think its the wonder drug I was hoping. Infections not clearing so yet more antibiotics and we have been for chest xray this morning. hope you get some results soon then maybe it can be treated.

Keep your chin up, my mum always says. Take care Linda x

[wjoanne918]

Hi Linda, things didnt go to plan, mam was taken into an EMI assessment ward on Friday and its broken our hearts. We were asked not to visit over the weekend but we visited today and mam seems very settled but it's killing me that she's 58 years old and everyone else there is in their late 70's / 80's. They've told us that she will be assessed over the next 6 weeks and then decisions will be made, we tried so hard to keep her at home but unfortunatley the incontenance finished things, it was too hard for Dad to cope with, I cant help thinking that this is it now, she'll probably never come home. This has been the hardest few days of my life and I cant help thinking that Memantine triggered this, i know this is also a part of the disease but the incline happened so quick. Hope things are better with you Linda, sorry for the late reply. Jo.

[Big Geordie]

Hi Jo. Initially i was so sorry to read your last post, but a second reading 30mins later i saw it a bit differently and i hope this helps; Your Mam seems to have settled reasonably, so perhaps she is not as concerned about the age of the other residents as you are. Your dad may take some time to adjust to the change, but i'am sure you said somewhere recently that he had his first nights good rest recently (i hope i got that right), with more rest and an opportunity to visit your mam and see for himself that she seems to have settled he may find the change easier to accept. As you know from my issues with sis-in-law, infections seem to take ages to actually clear from the human system, also your mam may not have had a full blown infection but still have picked up a minor ailment which in her weakened state has had a disproportionately serious effect. Finally this is an assessment phase so it may be a little premature to think its all change yet. Hopefully things may settle down over the next couple of weeks and you and your Dad may see things differently and more positively. Whatever Jo i think you need to try and step back a little bit and get some rest yourself over the next few days, it might help you see things a little more objectively. Hopefully your Dad can do likewise. I hope this helps you in some way. Love from me and the daughter!

[justbill]

Read some of your posts and am deeply worried I care for my wife with early onset ,she dropped off the radar three weeks ago and I thought that as a degenerative illness incontinence was inevitable and that though I could cope on a short term basis that was it , not a bit of it It was a u t i and since the anti biotics back to nomal or as normal as before so do get a urine sample to your doc or incontinence nurse, it may or not be a contributing factor but as I said in my case it was critical to my wifes continuing care at home, but its late I may have missed parts of your back story and you may have already explored all these channels. but like you it happened over night and lasted 2/3 weeks until the poo nurse sorted out urine tests and it stopped with the medication, so fingers crossed, it may just be that, good luck

[justbill]

dear jo
sorry its late just really read your post wait for the results as I said before.good luck

[wjoanne918]

Thanks big Geordie and justbill,
I'm alot more positive today. I've visoted mam twice today at the hospital and she is really settled, she's still incontinent but they think it may be due to a blockage in her bowells, they just need to settle her a little bit more before they can do tests. Mam was laughing and joking today and she even gave my dad a kiss (which is rare), I took some photo's of me, my sister, my dad and all her grand children and put them around her room tonight in the hope that she'll recognise us if there the first thing she see's and to brighten up a dreary hospital room. Dad did sleep over the weekend big geordie but i think that the rugby helped with that lol, and since then he's not sleeping very well and missing her terribly which is understanable, we both visited our own gp's today and they've given dad something to help him sleep and they've signed me off work for a while to get my head together. I dont feel as doom and gloom as i did yesturday but I think i'm on a rollercoaster and tomorrow will prob be different, who know's we'll see./ Thanks for the kind words. Big Geordie I hope Mray's doing ok, love to you and Laura and also you justbill. Jo

[Big Geordie]

Hi Jo, you keep popping up everywhere! I was panicking cos i was sure i'd replied to you but couldn't find it anywhere, i was reading your thread in the youngsters section! Glad you seem a bit happier today, even if you are feeling grim tomoz take comfort from the fact your mam seems happy and settled where she is, this will rub off on all of you sooner or later. If your Dad slept well as a consequence of the rugby, i can understand that, half our local fell asleep watching it (live!) as well, lol. I really think and hope you are about to turn a corner here and its not as grim an outlook as first thought. Mary is well, sis-in-law getting there, mother a nightmare, Laura planning her move to join us here! Love to you all, Big Geordie & Co

[nsc-68]

Keep your chin up hun, sending hugs xx

[wjoanne918]

I think i should stick with virtual hugs nsc-68 because everytime someone really hugs me at the mo i burst into tears lol, i know i'll get there. Thanks its nice to know people care x