Frontal Temporal Lobe Degeneration

[Margarita]

We feel that they are dealing with the mental health issues only, but his medical issues, ie the UTI and diabetes are not being handled efficiently. He needs some proper blood tests done but as hes sectioned & would have to travel 5 minutes away to the hospital the doctor doesnt want to do this. Surely the bloods can be done in house?

I would of thought so .

I can not understand why they are not doing it

Your father been section , so must be in an environment that there are trained nurses that can take you father blood sugar levels, also taking full bloods tests as someone must be giving your father insulin injections?
So only a trained nurse on site or a district nurse can give insulin injections . so there must be someone there already , because if not how your father geting his insulin injections every day ?

Can you get to see your father records of them taking his sugar levels or how much insulin injections your father take every day ?

 

[makalu]

Hi Margarita, the nurses on the ward do his bloods sugar and administer insulin accordingly but the diabetes nurse only comes in once a week to see dad and what she says on that one occasion they stick to religiously throughout the week. What they are asking for is to administer the insulin on a sliding scale rather than x amount of insulin if the levels are a certain level. They should get to see her again tomorrow so fingers crossed that she will agree to this. but as hes not eating or exercising & with the other drugs hes on, its very erratic.
The nurses have said that they are very concerned wth dad and they want to have other blood tests done to check for other illnesses (not sure what they mean at this stage), but this is what Doc said no to. There is one nurse there that is quite frustated that dads there, as she thinks he needs medical care not just mental health care. Again the Doc disagreed. I will get on the phone tomorrow and see what I can do.
We always get a report of his sugar levels and what hes been eating but it does sometimes see vague, perhaps I should get them to do a proper report for us every day. Thanks for your advice.....

 

[makalu]

Today.....

i cut my dads hair and he looks like a new man! Grade 2 all over he looked like he did before all this. Except his teeth dont fit so he isnt wearing them. But rather that than him be uncomfortable. We think it would be too distressing to get the dentist in.

The consultant today told us that dads body is starting to close down now, his brain isnt recognising messages of hunger or thirst or his bladder. He cant swallow. THe news is that it will be quick... what on earth does this mean? a month, weeks, a year? They cant say.....its such an unknown entity.....Looking at the last three months i dont think we have more than 3 months with dad. Im no profesional but i can see it in his eyes - when I can get him to open them.

I gave him a lovely head massage before i cut his hair and he fell asleep in the chair. Then mum washed him all over and he went to sleep. God bless you dad.

Good news is the baby has a little toothy peg coming through! All i want for Christmas is my two front teeth we have been singing! Bless her.

 

[jenniferpa]

Such sad news Makalu

I'm not an expert either but from what members have posted here, you're looking at weeks rather than months, and if he's not taking fluids (or not many) days maybe rather than weeks.

 

[Margarita]

The consultant today told us that dads body is starting to close down now, his brain isnt recognising messages of hunger or thirst or his bladder. He cant swallow. THe news is that it will be quick... what on earth does this mean? a month, weeks, a year? They cant say.....its such an unknown entity.

Sorry to read that .

I hope you don't mind me asking , but I do hope that mean that your father will be moved from where he is , and go into a Demetria nursing home .

Did consultant say when or where they are going to move your father for his end of life care ?

 

[makalu]

Hi Girls

The consultant wants him to stay where he is as he is on hand if needbe and is constantly being updated and reviewing my dad. They dont think we should move him to a nursing home as the care he requires is so intensive and his meds are so changeable, plus it will be too distressing for him - Im confused by this, they indicate that he doesnt really know whats happening or thats its christmas so how could this upset him? I am at the end of my tether nothing makes sense.

I am thinking perhaps if the end is that imminent maybe he should come home instead with an intensive care nurse living in house. but then i dont know what effect that would have on my mum. I think perhaps that would make it harder for her. We are struggling with our thoughts. He is settled where he is i suppose i just dont know what to do for the best. We are putting our trust and dads life in the hands of the NHS and believing that their actions are the best for dad. Its so hard. Everyone has such different opinions and advice......

 

[jenniferpa]

I think you really do have to put your Mums views first (as I'm sure you will) - she needs to do what ever will make it easier for her after he's gone.

It's just one woman's opinion but I would be pushing strongly for hospice care- it's a more home like environment but with more palliative support and open visiting: altogether much better than being in a hospital ward.

 

[Margarita]

I do feel for you as you are in a dilemma .

We are putting our trust and dads life in the hands of the NHS and believing that their actions are the best for dad. Its so hard. Everyone has such different opinions and advice......

Don't listen to anyone , but what the consultant is saying .

I am at the end of my tether nothing makes sense.

Nothing does make sense when your in a situation that you are in, you must be in shock its such a lot to take in, in what is happening with your father xx

 

[makalu]

You are both so right. I will look into the hospice option and speak to our helpful consultants. Thanks, will keep you updated.

Kind regards to you all. XX

 

[TinaT]

Dear Makalu,

Your words show how confused and very distressing all of this is. I wish I could help in some way, I feel for you, your mum and your dad so much. It would be so much better for all of you if your dad could be moved to a hospice where the atmosphere would be better for all of you. Perhaps the staff on the ward could advise you regarding this.

Lovely to hear of little first teeth appearing. My twin grandaughter's first teeth appeared recently but not without a lot of sleepless nights for their mum. They seemed to catch every bug going whilst they were teething.

My love to you and please let us know how things are if you have time.

xxTinaT

 

[sad nell]

just to say am thinking about you and your family and praying you will be given the strengh to cope, your love for your dad shows in all your posts ,take care of yourself in all this, love Pam

 

[makalu]

Thanks to you all..

for all your posts it means so much. I hope that you can all have joy this Christmas and make the most of your loved ones and your families and friends.
I managed to get some fromage frais and fruit puree tube things into dad today, they are long sqeezy tubes which you tear the top off, for children but no sugar or additives. The staff were quite surprised that he swallowed the two sachets. I will try again tomorrow.
Taking some wine & biscuits up to all the nurses and carers tomorrow i didnt know what to buy dad as a present, so i thought that he would have liked me to show appreciation to those looking after him.Im going to chat to mum about the hospice option over the next few days. This is a really good idea.

Thinking of you all. Nicky

 

[Margarita]

I managed to get some fromage frais and fruit puree tube things into dad today, they are long sqeezy tubes which you tear the top off, for children but no sugar or additives. The staff were quite surprised that he swallowed the two sachets. I will try again tomorrow

That is good news .

Taking some wine & biscuits up to all the nurses and carers tomorrow i didnt know what to buy dad as a present, so i thought that he would have liked me to show appreciation to those looking after him

How did your Christmas day go, positive or negative ?

Im going to chat to mum about the hospice option over the next few days. This is a really good idea.

have you manage to speak to your mother about it yet ?

 

[penguin629]

Hi Makalu

i've been reading these posts regarding your dad and am I reading correct that your Dad is in the end stage of dementia? It only seems a couple of weeks ago that I was reading about your dad writing measurements on the wall. perhaps I haven't been noticing the dates of these posts.

Anyway, I am so very sorry that this is the situation you and your family are in. I really don't know what to say except that I hope that you are okay and that I'm thinking of you.

Joanne

 

[makalu]

Christmas

Hi Margarita, Christmas day was sad, dad had a really bad night having gone seriously hypo twice and was thrashing out and swearing, they called the Dr and he was ok when we got there and one of the nurses had been on a 121 with him and managed to get him into the bath and they switched on the bubbles for him. He loved it and nurse said he was chatting as if she was mum. So that was lovely. The unit made such an effort for the patients, a really lovely dinner, and I went up with mum in the end, (she wasnt going to come but i got a bit upset b4 leaving so we decided to go together). I managed to get dad to have half a pig in bacon! his favourite and a bit of turkey and a few sprouts. He looked a bit better today and i went for dinner and he was tucking into mince and dumplings. Not a huge amount but he let me put it on the fork for him, then started throwing half sucked grapes at the lady opposite! i feel a bit more cheerier now hes eaten. Havent spoken to mum about the hospice yet and shes gone away with to her sisters for a few days now. She didnt eat hardly a thing over christmas and it was really obvious she was trying to hide the fact she has no appetite. How was your christmas? Thanks for your message and your concern.HI Joann

 

[makalu]

Hi Joanne
You are right this has all progressed so quickly, i think i have been posting on here since beginning of November when he went into the assessment unit. We are unsure why things have suddenly started to go downhill so quickly, its the disease aparently, but the consultant did warn us that if dad went in this may happen. Hes now had his sedation reduced - maybe this has made a difference to him as he is tottering about a bit more & nibbling on food a bit more, still very minimal amounts though.
One other thing, when i took the wine up for the nurses and cooks and everyone that works so hard up there, they were all so overwhelmed and said that they had not received anything from any of the relatives of the people they care for, she was nearly in tears thanking me. I told them it was the least i could do as they were looking after my precious dad, but they were so appreciative. And do you know some of those people in that unit could have gone home for a few hours or had visitors but hardly anyone came to see them. Hearybreaking.

 

[penguin629]

Hi Makalu

It's so sad what you said about some of the people would have been allowed home for a few hours on xmas Day but no one did it. I would have killed to have been able to take my Dad home for a bit. As it was my mum & I visited and both left in tears. He looked awful, so very tired and had an awful bruise on his head where he'd bumped following a night of moving furniture. They've upped his dose of the anti-psychotic and it takes a couple of days to get in his system. Mum saw him yesterday and today and he was much brighter.

My mum takes loads of sweets and biscuits for the staff to share out with the other patients. She's so grateful for the excellent work and patience they have. I can't imagine not thanking them. As for the non visiting relatives, my brother I suspect is finding it hard to face what is happening to our Dad. He makes excuses not to go eg, work and his children and I suppose he thinks what he doesn't see won't upset him. On a good day I hate leaving my dad there. I can barely get my head around what's happening to him let alone not go.

It must be very hard seeing your Dad decline. I know I've got that to come. But this forum is an excellent place to hear kind words. thank you for explaining the situation with your dad.

Thinking of you

Joanne

 

[makalu]

If i could have taken dad out for a few hours i would if i could have seen a smile on his face that would have been my christmas in the bag. But it is hard for us all and we all deal in different ways. I now find that I am enjoying (if thats the right word) the precious moments I have with dad, whether it be him telling me to go home, or whispering to me when he's in the bed, when i chat to him, or helping him eat, or holding his hand and walking up and down the corridor, even watching him peacefully sleep. I cry every time I drive to the unit and when I leave, and its ok to, if you didnt then you would be a tougher person than i am. Mum on the other hand sits and cries and sobs when shes with him, i cant get her to understand that she needs to make the most of every single moment with him and enjoy the time they have left together - but it is so hard and i expect your brother thinks about your dad all the time, even though he hasnt been to see him for a while. Although I can imagine how that makes you feel, but stay strong and enjoy every moment.
lots of love and lets look forward to some more cherished moments in 2009.

Nicky

 

[Margarita]

How was your christmas?

Mum sat quietly, as all the family where around. I have a Step Son of 33 that came around also which mum enjoyed as mum misses the present of having a man around the house as my father has pass away , I am now Single . My son away at the moment his 28, so Christmas day went really well as mum seem to behaviour nicely when there a man around. Then last Sunday mum went to respite for a week , which is really good for me , because caring for my mother has not been easy as my mother has very challenging behaviours , then over the years have got better , but has left a mark on me mentally as it has left me mentally draining so respite does help .

The unit made such an effort for the patients, a really lovely dinner, and I went up with mum in the end,

Its good to read that you unit is making an effort for the patients , also that your father enjoyed the bath he had .

Mum on the other hand sits and cries and sobs when shes with him, i cant get her to understand that she needs to make the most of every single moment with him and enjoy the time they have left together

We all grieve in a different way, different stages. better to let that emotion out rather than bottling them up Otherwise I wonder if like with me I ate them up with comfort food . I hated crying when my father pass away mum got dementia,I never really cry , just shading a tear or 2 Then few years later I thought I would never stop crying . I always thought crying was a sigh of weakness, also to much self petty I was wrong on that .

I must say that I have never seen my mother cry in my whole life, even when my father died . Mum just scream , I would see her eyes get weepy , but a tear would not drop . she just sod it back in may be that was to do with the dementia .

Your right there when you say , Make the most of every single moment, enjoy the time you have both left together . But crying is just showing your mother pain. With emotional pain after a while you just learn to live with it , crying does not kill you . It just make you stronger as time passes .

 

[makalu]

Speech Problems

Happy New Year to you all, I hope that this festive period has brought you some happiness.
My dad is having problems speaking, it sounds like his tongue is too big for his mouth, he is very 'lispy'. As he doesnt have his teeth in (top or bottom) obviously this makes it worse, he isnt eating hardly anything and his diabetes is all over the place. It goes from 2-3 one minute then up to over 20 the next. Its a real problem. Dads tongue seems very white and I imagine it must taste awful in his mouth. We have been giving him the 'Froobs' fromage frais fruit which he will swallow when he feels like it but mostly spits it out. Is he having problems swallowing? Is it his diabetes or is it just the disease taking hold as the consultant indicated it would b4 xmas. he did go downhill prior to Xmas but then started eating a bit. Now hes stopped again. Hes very quiet and withdrawn and cannot get comfortable. Hes not on Haloperadol any more either which is a good thing as he is a bit more active, but maybe this is why hes so fidgety all the time. He is trapped in this awful world and cant tell us what is hurting, I dont know what to do. Review is tomorrow so perhaps we will get some answers.....