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Just advice. And 'hi!'

woowoo

Registered User
Jul 20, 2013
51
Hello everyone,

I'm Jo. I care for my father who was diagnosed with dementia and cerebral atrophy 11 months ago. He's 93. He's not too bad to be truthful but is very stubborn. His memory is ok from day to day but some days are a lot worse than others.

Recently it's getting harder and harder to get him to eat. Every meal time is a struggle. He only weight 51kg now. Some days however, he will eat constantly but most days when he's given food, he will take a mouthful or two and then put it in the floor.

Today has been particularly hard and I found your forums after searching for someone to talk to. I'm really struggling today.

I have no support network whatsoever. No family or friends to help out either. We do have carers in morning and evening to help dad get in and out of bed but apart from that, there's nothing. I am basically housebound with him apart from 10 minutes here and there.

Our local council has put me on a waiting list for a reassessment. I'm hoping for some sitting services on top of his current package. But I've been waiting since early May.

Can anyone offer any advice on the following -

1) meal times - how can I get dad to eat more. I've tried everything - flavours, small portions, finger food, cutting the food up.

2) dealing with stress and isolation. Today it has really got on top of me. I have no life.

3) hello and I hope to make some friends :) xxx
 

chris53

Registered User
Nov 9, 2009
2,929
London
Hello woowoo, hi from me:) and a warm welcome to Talking Point, glad you have found us, so no more feeling alone, here you will find real people dealing with a frustrating illness,caring, trying to to care, trying to cope, battling the "guilt monster",getting help and so on.....all in the world of dementia which some of time we don't understand....so sorry dad is not eating, a bigger worry at times then dementia:rolleyes: maybe dad would like snacks rather then a "proper meal" or food he loved when he was very young, ohhhhh my mum now loves the "old fashioned puds" - with custard...which you can really load -big time - with calories, have found both my mum and mum in law, (who are both sadly on the dementia journey in different ways) have developed a very sweet tooth, so unless it would cause a medical problem, now having a healthy eating routine has gone out the window.....eating whatever and whenever is good....also please request! that dads doctor gives a prescription for ensure drinks which will put weight on, and also they also have additional vitamins:D please also speak to the GP and get them to get things moving for dad,for a doctor doing a referral to social services for an urgent assessment of needs, really can speed things up! please keep posting Jo,whenever you need to, there is always someone around day or night here who you can talk to, you are amongst friends here;)
Take care and sending a hug and hoping you feel more light of heart now:eek:
Chris x
 

kingmidas1962

Registered User
Jun 10, 2012
3,537
South Gloucs
Firstly -hi! ! so glad you came for help, advice and company. This forum is excellent for all three!

I can't advise on your questions specifically but the one thing that is obvious is that you must get more help....is there a reason why you have so few visits? If it's arranged via SS then maybe you need to go back to them and tell them you simply cannot manage. .. if self funding perhaps it's time to invest in some more care visits.

And then there's you. You also need caring for, which is tied in to your fathers care. You need some respite, and sooner rather than later ...

I hope you keep coming back - someone else will be along with much more practical advice about your questions

In the meantime - big hugs to you. Don't struggle on alone!
 

woowoo

Registered User
Jul 20, 2013
51
Thank you, both of you.

We've tried the Ensure drinks. He doesn't like them. I even made them into ice pops and he recognises the taste!

Snacks sometimes work but usually it's just a mouthful. He's just agreed to some creamed rice pudding.

Social Services are just dragging their heels. The dr has had a word with them as well as The Veterans Party. Dad flew Lancaster bombers in the war. I phone them every 10 days or so.

I've cried so much today - mostly out of frustration and then because I broke my mums plate (lost her in 2010)

I will most probably be posting a lot. :D I have to admit that I'm very isolated at the moment. Cornwall is possibly not the best place to be!

Xxx
 

Noorza

Registered User
Jun 8, 2012
6,542
Hi, sounds as if you have your hands full and aren't getting much in terms of respite. I change from angel daughter into devil daughter (in mum's eyes) in seconds. The verbal abuse, threats, and sometimes violence is very hard to deal with but this site is full of fabulous and knowledgeable people who understand and just letting off steam itself is a great help.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,856
69
Dundee
Just wanted to say 'hi and welcome'. I hope you will visit the forum often and I know you will make friends here. x
 

PeggySmith

Registered User
Apr 16, 2012
1,683
BANES
Hi Woowo,

Just wanted to say a big welcome. You'll get loads of help and support here. Sadly, not from me at the moment as I can't really help except to say that there's a saying often repeated on here, "the squeakiest wheel gets the most grease". In other words, you have to keep on at the authorities to get their attention.

Have you had a carer's assessment? You're entitled to one and, if I were you, I'd go to my GP and tell them just how isolated you're feeling. A phone call from a doctor can often speed things up.

Are you in touch with your local Alzheimer's Society? It can vary a bit from area to area, but I got a lot of help from ours.

Is there a carer's support group in your area? Again, they can be a godsend.

Age UK can also offer help and support.

Good luck and remember that you're not alone. You can post on here any time of the day or night and someone will be along to chat, send a hug or give practical advice.

Peggy
 

woowoo

Registered User
Jul 20, 2013
51
Hi Izzy and Noorza.

Apart from 2 x 3 hour breaks, I haven't left dad since mum died in April 2010. When dad was initially assessed, they didn't think he needed any. I've had a Carers assessment and they have recommended extra funds for respite but I now have to wait for the adult social care to do the assessment. I've been waiting since early May.

No abuse with dad. Sometimes back chat like a kid but at the moment he's going through a phase of trying to do everything with his eyes closed.

Xx
 

woowoo

Registered User
Jul 20, 2013
51
Peggysmith - we have a memory cafe locally but most of the services are a 60 odd mile round trip. We live in a very rural area - only now having a sainsbury's built! ;) xx
 

Big Effort

Account Closed
Jul 8, 2012
1,928
Hello WooWoo/Jo,

What an interesting post you wrote, and welcome to our circle. See one post, and you are already one of us. So many of us know EXACTLY where you are coming from.

Just a couple of thoughts.
You should not have this burden alone. Don't put up with it. Fight it. Fight the system that welds a carer into isolation through state neglect. I live in France so cannot advise, but I do know that up to a year ago, I never left the place, cared for Mum. Social workers came to assess Mum and were alarmed about me. That shocked me. Now we all go out to dinner with dear friends (one had a bad stroke, and I in my turn, encourage him to make slow steps back to mobility) and life is totally different.

So, for company, how about inviting someone in once a week. That way you don't have to leave the house and your Dad, BUT you get to link with the outside world. Jo, I think this is really important.

From one night out, I went to taking on part time work, and in September I will be doing more and have set up my own business. I would NEVER have imagined this. But it starts with one step. And repeat step one again and again. And again.

Food.
It is possible for people with dementia to forget how to eat. Mum watches us for cues. Have you considered eating the same as him, and sounding enthusiastic, eating slowly in his full line of vision. Maybe he can copy you. Or you take a bite, and he takes a bite? I see he can begin a meal, just he runs out of steam quickly.

What about a blender? Whizz up everything so it can be drunk. I read someone here even puts burger and chips in the blender..... it does the trick.

Also you might have to try little and often, like a baby bird. Just pop in a morsel as you pass his chair. And 5 minutes later pop in another one. Many a tasty morsel, a square of bread with a topping he may like, and keep posting them into his mouth. That way there is no meal time per se, just nibbles. Lots of nibbles.

Does he drink well? If so you can try really runny mashed potato with lashings of very tasty homemade gravy. No lumps, nothing to chew, and tons of flavour. Hot runny custard made with full milk and even bumped up with cream if calories are needed, may slip down and it is nourishing.

Jelly and icecream in this hot weather. Not as a meal, or a dessert, but between meals.

Just some ideas, Jo. And I am ever so glad you found us. Keep posting.
PS I have written nearly 2000 posts in a year. Lots of friends to be had here. It is amazing how the internet brings friends right into our home. Lonely with this forum? Not any more.

All the best, and I compliment you on doing an outstanding job. Your Dad is doing fine. Now it is time to look to you. All the best and post again, BE
 

Noorza

Registered User
Jun 8, 2012
6,542
Hi Izzy and Noorza.

Apart from 2 x 3 hour breaks, I haven't left dad since mum died in April 2010. When dad was initially assessed, they didn't think he needed any. I've had a Carers assessment and they have recommended extra funds for respite but I now have to wait for the adult social care to do the assessment. I've been waiting since early May.

No abuse with dad. Sometimes back chat like a kid but at the moment he's going through a phase of trying to do everything with his eyes closed.

Xx
Thankfully, and I know that's selfish, but thankfully I don't live with Mum, truly I couldn't do it. I live really close by but when I close my front door I am free of it.

I have had a some really vicious nasty messages left on my answerphone this week, threatening to report me for verbal abuse of an elderly person, (she's actually violent with me I don't hit back) and to try to have my child taken into care. I've let the answerphone fill up so she can't leave anymore, they are so painful to listen to.

I deleted them, really I should have saved them and let her CPN listen to them to see how bad things really are as mum can seem so "normal" at other times.
 

woowoo

Registered User
Jul 20, 2013
51
Lovely words BigEffort. Thank you.

All of my friends have kids and are married etc so despite invitations, no one visits.

I'm only 34 - my parents had me very late in life and it just feels like my life is passing me by. No partner, no kids.

I try with the nibbles - biscuits, something sweet or a piece of fruit. Sometimes he takes them, sometimes he doesn't.

Fluid wise, he's not too bad. Loves his cup of tea but gets mad with me when I remind him to drink it.

It's lovely to know that there are others out there who can help and with whom I can talk to.

Xx
 

woowoo

Registered User
Jul 20, 2013
51
Oh Noorza, sending hugs. Dad hasn't reached that stage yet. We've always been close seeing as its always just been the three of us - mum, dad and I - until mum passed away. Xx
 

Noorza

Registered User
Jun 8, 2012
6,542
Lovely words BigEffort. Thank you.

All of my friends have kids and are married etc so despite invitations, no one visits.

I'm only 34 - my parents had me very late in life and it just feels like my life is passing me by. No partner, no kids.

I try with the nibbles - biscuits, something sweet or a piece of fruit. Sometimes he takes them, sometimes he doesn't.

Fluid wise, he's not too bad. Loves his cup of tea but gets mad with me when I remind him to drink it.

It's lovely to know that there are others out there who can help and with whom I can talk to.

Xx
Girl at 34 you have to have your life too. That is so young to be dealing with this.

Just an idea have you thought about internet dating? You never know.
 

woowoo

Registered User
Jul 20, 2013
51
One thing that I find hard to accept with dad is the selfishness. It's just not him and I know he can't help it. He wants everything and anything done for him an its still not enough. He has everything he asks for and I have to do without but he doesn't realise. Dementia is horrible and tears people apart. :( x
 

Noorza

Registered User
Jun 8, 2012
6,542
Oh Noorza, sending hugs. Dad hasn't reached that stage yet. We've always been close seeing as its always just been the three of us - mum, dad and I - until mum passed away. Xx
My family consists of

1. The invisibles who are verbally supportive of me.
2 "I'll help empty your bank account" then become invisible again.
3. 1 master manipulator.

Honestly for me without some of my family things would be so much easier.
 

woowoo

Registered User
Jul 20, 2013
51
Noorza - it would be unfair on any potential partner as I can never leave the house. Not until the SS sort any fusing out for dad at least. I'd love someone to just spend time with. It'd be heaven! X
 

woowoo

Registered User
Jul 20, 2013
51
It's just dad and I now and one distant cousin who lives 400 miles away but does visit once or twice a year. I do have a large family of cats with me!

Dads Carer has just turned up. Back in a bit. Xx
 

Noorza

Registered User
Jun 8, 2012
6,542
Sadly Mum is too poorly to see she is being manipulated. There are other issues such as when Mum's feet and hands went blue and she assured her there was nothing to worry about. Mum finds this comforting, she hates hospitals and doesn't want to go in. Mum doesn't understand that not going in to hospital could lead to her death from a blood clot.

So I'm the bad guy for getting the ambulance out.:rolleyes:
 

Noorza

Registered User
Jun 8, 2012
6,542
Noorza - it would be unfair on any potential partner as I can never leave the house. Not until the SS sort any fusing out for dad at least. I'd love someone to just spend time with. It'd be heaven! X
I haven't had the courage to try it, but do consider it from time to time. I guess it would be the other person's choice if they felt it was fair. They'd need to be made of tough stuff though to choose to walk into our lives.