Mum's fits.

[Rosie]

Hello all, Been to see mum today, she looked as she normally looked , mam is in the advanced stage of AD , like a baby now, needs all care. But my Dad told me on Friday she had a fit, she has these, not regular but every now + then. The Doctor on the ward told my Dad that everytime this happens some more cells are destroyed in the brain. Has anyone come across this with their loved one. This time last year mum developed a chest infection + we were told expect the worse but she survived and has remained pretty much the same since then, eating one day + maybe not the next. With this illness doe's there ever come a time when they stop eating all together ?
When I'm giving mum her food, pureed stuff I sometimes have to encourage her to swallow by gently stroking her throat , but this has gone on for a long time. Mum is 67yrs this year + was diagnosed just before her 60th birthday, the illness seem to take hold quite quickly , but now it seem's like mum has remained the same with the illness for a few years. I know most probably no-one has answers for me but it's comforting to know I can share my experience with you all as well. Thanks for listening . Rosie x

 

[McK]

Fits

Dear Rosie, My wife is in somewhat the same condition as your mum. My wife was diagnosed with AD at age 56 and just turned 66 last month. She too is bedridden and for all intents and purposes is like an infant. All her food has to be pureed and all liquids, with thickener, given by spoon. The swallowing is difficult at times, but that goes with the territory, sad to say. She takes daily med for seizures and I don't know if that is what you mean by "fits". My wife is still at home and I'm the primary caregiver, and hopefully, I can continue. I think the most difficult part of this terrible disease is the inability of the one with AD to communicate with you. No matter what the relationship, it is very difficult to watch one you love slide into this bottomless pit. My thoughts and prayers are with you and yours - McK

 

[Stimpfig]

Hi Rosie

Sorry to hear about your mum's condition. I have no particular experience here but my late mother-in-law who had suffered two major strokes was bedridden for 6 years without being able to eat or talk or walk. She used to be fed through PEG (pericutaneous endoscopic gastrostomy) constantly. I suppose if a patient 'stops' eating, nutrition is given through PEG which, according to my hubby, has become a common procedure today. I am sorry that I wasn't of much help but I will be thinking of you.

 

[Amy]

Oh God, I wish I hadn't logged on tonight. Have been able to spend quite a bit of time with mum this weekend, holding her hand (trying to straighten it as it is beginning to curl and become very stiff). She still eats well, but seems to be having more trouble taking a drink. She was smiley at times, but lost at others. This thread has made me see what is to come, don't know that I can handle it. Course I can, I just don't want to. I hate this illness, it wrings you dry. It takes people from you, bit by tantalising bit
Amy

 

[Brucie]

Hi Amy
Try not to let it get you down - it may never come to this for your Mum, and if it does, then you at least won't be totally surprised.

Having read the information, just remember that TP is a place where all sorts of information is available, and you can come back here with anything that happens in the future, and someone will have been the same route, and thus can sympathise or offer their own knowledge. Sharing helps.

For the moment though, concentrate on the now and wring everything you can from that.

It takes people from you, bit by tantalising bit

this is true, but weirdly that means the process of adjusting to that [for both the patient and the carer] can be slower, and in its way not as painful as a sudden and totally unexpected catastrophic loss.

Yes, I know that many of us may believe something that is not drawn out is preferable because at least their pain is less, and we can grieve and try to move on. Since there is not a choice [what happens, happens] there is little point in thinking about it.

 

[Amy]

I'm sorry Bruce, I know what you say makes sense, but I am so tired of the hurting; life seems to throw one bit of c--- after another. I know that I have a lot to be thankful for; I spent a wonderful hour with my two teenage sons last night just talking about things we' d done this weekend (they had been off with their father). My husband and youngest had gone to bed, and we sat round the dining table with hot drinks.

I'm sorry I wasn't sympathetic to Rosie, I just went off on my own tack; I didn't intend any criticism of the thread. I felt so guilty yesterday that my mum's life is now sitting in a chair in a lounge; she looks around but apart from being walked to the loo that is it. Dad says that when the weather is better he will take her out in the wheelchair. At least when she was at home she was part of family activity when my family went, or there were neighbours who would call; there was some variety.

Dad couldn't cope any longer though and I'm too selfish to give up my job (even though a lot of the time I don't like it), so it's me that's putting her there. That's how it feels at this moment. The only thing is, mum seems OK, so maybe she doesn't mind it. I hate this illness for what it is doing to mum, but also what it is doing to me, and I know that I am being thoroughly selfish.
Sorry.
Amy

 

[Geraldine]

Hello there

My Mum gradually lost her appetite and ability to eat a few months before she died. About 5 weeks before she died and ill with a chest infection it became obvious she only wanted spoonfulls a day. I requested of the home and her GP that I only wanted her to eat and drink if she wanted to and requested no artificial hydration or nutrtion ie no peg feeding.The Home and particlualry the GP were very understanding and kind when I discussed it with them and we all agreed that it was kinder to let Mum gently go. Up until about 3 days before she died food and drink continued to be offered but she only took maybe a teaspoon a day and the home monitored carefully what was offered and what was taken, I was able to see these sheets daily. She spent the last 3 days in a hospital being hydrated to keep her comfy but by then she was semi comatose. As I am the only child I realise that it was 'easier' fro me to take these kind of decsions than in some families where there are more siblings. I also realise than some people find this sort of subject dreadfully upsetting but hopefully my expereince will help others in someway.

By the way Rosie, you are not being selfish wanteng to keep on working. You are there for your Mum and Dad. Whose to say that if you had given up your job you would still have been able to keep your Mum at home. I would not have been able to look after my Mum at home, she did live with us for a few years before she became ill but I had a near breakdown before I realised I could not cope anymore.

best wishes Geraldine

 

[Brucie]

Hi Amy

I am so tired of the hurting

... one of the the unspoken mottos of TP, I fear.

Me too.

 

[ludwig]

Amy,
you said to me yesterday, me and my sisters were doing a 'good job' or similar. It seems to me that you are the one showing us how to go.

Hang on in there, keep working if you want (or need) to. You may feel guilty but thats par for the course I'm afraid.

I'm thinking about you, keep pedalling and smiling!

Ludwig.

 

[jakky]

ditto Ludwig
thinking of you in these tough, tough times, Amy. Be strong, and keep with your positive attitude. "for mums sake".(TLC)
keep going....TP helps me, LOADS...
jakky

 

[Amy]

Hiya Ludwig and Jakky,

Just ignore me, I get these patches when I get very down with things. I only found Talking Point in January, and find it such a relief to have found a place where I can voice my despondency at times. For years there has been no-one to talk to (though I did once spend a long time in tears on the AS helpline). I think the good thing about TP is that we all understand that life with dementia is a rollercoaster, and our feelings can change from day to day. The number of times that I have sat crying over this keyboard since January, but I do feel I'm dealing with feelings now, rather than pretending.
Anyway on Sunday I expressed some of my concerns to dad ,and a Nurse in the Home (independently), about mum spending too much time in a chair in the lounge, and suggested that someone spent time massaging her hand to try and prevent it stiffening (as it obviously causes her pain), and on Monday the Manageress spent an hour talking to my dad about my concerns.
Anyway, I'm OK at this moment in time. Hope you both are too.

Take care.
Amy

 

[Sheila]

Dear Amy, I am so glad to hear that TP is of help to you. Dealing with the problems caused by dementia is something that can devastate the strongest of us. Over the years I have found that my pals on TP have helped me to cope with the most awful things I could have imagined. If we in turn can help you and others, then for my part, I feel that my Mum's suffering was not in vain. We all can help each other here, no one has all the answers and of course we all have different circumstances and opinions. By sharing these, we can build on experiences and make a real difference to the way dementia is thought of by others who have not had to deal with it first hand, often 24/7. The main thing is that there is someone here for us when ever we write. It is never long before you get a reply, this can be a real life saver if you are down in the dumps I know only too well. There will be times we need help, times we can reach out and help others and times when we just feel like a chat or a laugh, (it is OK to laugh). It doesn't matter, just keep posting and hopefully we can all make a difference in this world of ours. Lotsaluvanhugs, She. XX

 

[ludwig]

I found TP by accident last week.
I have let go and cried just three times in the last year over my Mum, once when I showed her the numbers on her front door because she was convinced she was in a house we had once lived in as a familly up the road. She burst out laughing and said that if I thought that I could convince her by that cheap trick (ie I had changed the numbers), I was wrong. She accused me of being a disgrace to my fathers memory etc etc. I cried myself down the motorway back home.

I have been in tears on this site almost every day reading about the heroics of other people in situations worse than ours (this is a bit tricky as I'm a big 50 year old bloke with a big job in the cut and thrust of Industry but with internet access at work!). I've had some great advice about my mum and wont hesitate to come back for more when necessary.
Being able to talk to people who understand and in complete anonymity is utterly brilliant.
We all need to find a willing ear from time to time and yet at others we feel strong enough to put something back.

Amy, sorry (no I'm not!) we wont ignore you, and we understand (oh how!) what it means to be able just to talk with no strings but with people who share THE problem.

Keep smiling
Ludwig

 

[Norman]

Amy
you will never be ignored on this site.
One of the worst things about AD is the loneliness of the carer,wanting someone to talk to.
You will always find one of us 24/7,post when you need
Norman

 

[Amy]

Thankyou.

You are all a load of big softies, and I'd love to put you all together in a room, and go round and hug everyone. (Sorry if you are not, but I'm a huggy person!) I don't know about anyone else but TP makes me feel cared for. Thankyou.
You know what is good about this place, no-one tells you to pull yourself together. It is that understanding that we have of one anothers needs to grieve and be angry, and being given permission to be happy.
Amy

 

[Lynne]

Call the Guinness Book of Records!

That could be the biggest Group HUG in history! If only it could happen.

 

[Norman]

Amy
you are right about this site.
We lost many friends when AD arrived.
Then we joined TP,and then we had more friends than ever before
Norman

 

[Amy]

Hiya Norman,
Yes, when AD arrives so do the Christmas cards saying "been meaning to call..." I think some people just feel too threatened by it, there but for the grace of God...sort of thing. They stop seeing the person and just see the illness. But that is their problem, not ours.
BFN
Amy

 

[connie]

I had my faith restored somewhat yesterday. I met a local electrician who had worked on our house for a few weeks some 4 years ago.

He asked after Lionel, and seemed genuinely sorry to hear of his decline.
"Please tell hime I asked after him" he said. "He may not remember me, but remind him I was the chap who had back coffee, no sugar, but liked lots of jam on his teacake"

I did tell Lionel, and whilst he may not remeber the man exactly, sort of remembered the time. "Yes I was able to make the coffee in those days"
Bittersweet, or what. Connie