Update on Mum

[Gelthling]

I know few of you have read my previous posts - just wanted to do a little update.

At the moment mum is in hospital. I have been worrying about her all weekend as she has been texting me that she wont drink anything at all if she has to drink thickened fluids, and the most she eats is Vitbrits for breaky, a youghurt for lunch and a few mashed veges for dinner. Well, since the weekend I was getting texts that she had hardly been eating. She has said she has had gastro for the past 3-4 weeks too. On Tuesday we had MND Clinic visit, she had messaged me at 10:30 night before she ddnt want to go as she couldn't get to sleep. Then again at 6:45 am (I;m still asleep) that she had gatsro and didnt want to go. I had to take her as they are the only ones tracking her progression and symptoms.

Then she messages me her carer is late, so when I got there I had to shower her etc. ( I found out later she had actually cancelled them the day before!) We drove the 1 1/2 hour to the clinic - mum was constantly getting me to help her to the toilet, saying she was going to be sick, getting hot etc so she didnt have to answer to many questions. When they asked about a Peg she said she'd try it. Asked if wanting to go into nursing homes she said Yes - I was so shocked I asked when? She said now! Anyway,got her out of there, they recommend I take her to our doctor. I get her an appointment that afternoon - he discusses the Nursing home - she says no.

That night just after I left my uncle visited and pealed veges etc for her. he left - she then proceeded to message my brother at his work if his partner was at home because she needed her veges mashed ( she has been doing it all herself till this point!). She then pushes her emergency button as she thinks she is chocking. My uncle stays with her till 9:30 that night. At 1am, she pushed the emergency button, and my brother and uncle turn up - and she wants a CUDDLE!!! Then when my brother got home,she continued to text and ring him (she cant talk!) until about 3 in the morning.

The next day she tells the carer she couldnt sleep because of her Gastro!! (No mention of that in the texts, or had I seen any sign when I ha been helping her in the toilets for the last few days!). I called our GP and case manager- they think she may be dehydrated so take her to hospital. There, a neuro looks at her, mentions a peg - mum says no - asks does she have gastro - No, then askes me if her texting is as confused as her writing - I say YES! Next night they put her in a ward - and we get texts at 12:30am that They are killing her! I find out later she had been pushing the nurse button every 2-5 minutes after I had left her at 10:30pm, so they had to take it off her.

We are waiting to see when and if she comes out of hospital - as I think the staff are wondering if she is safe to return home on her own..even with carers during the day.

Lots more happened - but this is too long already - sorry just not sure whats going on with her!

[MtPockets]

I am so sorry to hear this. This has got to be terrible for you and the family. Have you discussed having her put into a nursing home against her will? Sounds like something has to be done soon or she will wear everyone out. When she really needs help and presses the emergency button no one may come thinking it is just another false alarm.
I pray somehow you can get this worked out and finally have some peace.

[tdamess]

she seem o.k. as long as someone is there ,maybe she don't want to be left alone and is much more scared than anyone thinks.and is not yet ready for a nursing home just don't want to be alone. or maybe as , someone else here asked for help for controll issues it may be that also but what ever it is i hope it works out soon for the family and her as losing your own independence is not an easy thing to accept and do

[pamnandy]

Gethling, I'm so sorry you, your mum, and your family are having to face this. It sounds like some changes will have to be made soon in her living circumstances, and you all will be facing some hard decisions. I will pray for you all. Blessings, Pam

[Gelthling]

She did ask my father to move back in - they have been seperated for ten years. She did ask hom when first diagnosed, and he would have, but two week later she said she didnt like him and didnt want him moving in. Now we are worried she is just asking so she can get out of hospital, and even though dad is thinking about it - within a week she would tell him to get out! Unfortunately I cant be with her as I have three small children all 4 and under, and my brother and dad both work 12 hour shifts. There is no chance of any other family members helping any more than they are now - which isn't much!! Because of the cognitive issues, she tells people what she thinks they want to hear - in the past 5 days she has said Yes to the Peg twice and No to the peg Twice...so it is very hard to gauge what she actually wants done. I will be getting guardianship over her - though her brothers are telling me to go independant and noone else in the family has been willing to take it on either - but how do we make decisions for her when, because she has always been in major denial, has not expressed her wishes if different things happen. We shall get through this - probably a bit wrinkled though!!

[Gelthling]

Mum was in hospital for 2.5 weeks due to malnutrition and dehydration. The doctors were saying she would need to go into a nursing home as she needed 24 hour care. My wonderful dad agreed to move in with her, and whilst he is at work, we have carers come in,and I visit her on those days too.

I can not say enough about my dad - he and mum seperated over ten years ago - he just wants to see her happy for her last months - and help take the stress off me with me having three littlies. This has been his first week there, and it is the happiest I have seen mum in a long time - even if she was to go next week, we are glad we have been able to make her smile!! Quality of Life is paramount!!

[pamnandy]

I am very touched by the compassion your dad is showing for your mum, and ultimately you. Way to step up! I can tell you feel very good about it all. Blessings to you and your family as you endure this rollercoaster!

[LauraW]

That is so wonderful. That really touched my heart. Dad must be a great man.

[tdamess]

happy for all of you

[Blackpool]

That is so great, what a wonderful man your Dad is to feel such compassion. Peace be with you all.

[peter57]

Hang in there,
Dad must be a great man and i am sure you are feeling a lot better now (and getting some well deserved rest/ sleep)
cheers
Peter

[Micheline_h]

What a wonderful dad you have, you too have so much to offer your mom keep it up and remember your always welcome here vent, cry or just plan get mad. Have a wonderfull day

[Gelthling]

Thanks all, yes I am feeling slightly less stressed - which helps my littlies I can tell you. We don't know what else this disease is going to bring - she can no longer get herself out of bed, and yesterday she couldn't walk down to her recliner first thing in the morning like she has done all week. I was feeling guilty when the decision was first made about dad moving in - but decided he's a big boy and can make up his own mind...and the help and companionship he is giving mum is probably the best gift ever!

[MtPockets]

He sounds like a wonderful man who has stepped in when needed. I know it must be difficult for him.

[Gelthling]

Mum has realised in the last two days that she can no longer wiggle her toes on her left foot. The community nurse asked her today if she could move her foot up and down from her ankle - she moved it...with her hand!!! Haha.

Does the paralysis creep on like this that all of a sudden you just cant move your toes, then your foot, then your leg?? Also, her feet are cold all the time and her feet are usually a blue/purple colour in the morning. Does anyone have suggestions for warming the feet,or just warm socks will help?

Thanks