And so it goes on...

[Grahamstown]

This is the thing about TP, you can say it like it is, but that does change as the person you are caring for changes. My feelings a year ago after realising he was not well followed by diagnosis were different from how I feel now. Then I didn’t think I could carry on, felt trapped imprisoned, wanted to escape and had ugly thoughts. Now I have worked out how to survive and live a different kind of ‘we’ from our previous life. My relationship with him has changed, to more like parent and child. I know that it hasn’t changed for him but I can’t do anything about that. Interestingly my relationship with my mother was reversed because I had to be the mother to her child because of her difficulties, not dementia though. So I have always had to assume responsibility although dementia has tested me to the edge.

I am enjoying the Understanding Dementia course because it is abstract and at an arms length from the coal face. It has irritated me in some ways because of that although I am only at the beginning, because it all seems so rational quite unlike dementia which is the opposite.

 

[AliceA]

Poppy, Many of us care because we love even when it is not returned in the same way.
Many on here are really heartbroken and grief stricken when a time comes we/they can no longer care hands on.
They suffer financially and emotionally to continuing to care, visiting and being an advocate on the behalf of someone who through no fault of their own is vulnerable.
Because some people rant on here expressing their frustrations does not mean they would willing stop being a Carer. Hands off or hands on.

Choice is a bit of a catch22. What choice?

 

[jenniferjean]

Because some people rant on here expressing their frustrations does not mean the would willing stop being a Carer. Hands off or hands on.

Exactly, if we couldn't rant on here where could we rant.

 

[AliceA]

I cannot see that Poppy has posted anything about her own situation.
I feel she could either be acting as Devils Advocate or she is young and frightened, for her her sake, I hope not the latter. If so, Poppy do post you will find the site helpful and positive too.

 

[Grahamstown]

I was worried too @AliceA and hope this forum helps.

I have worked my way through the first module of the course and I now know something to illuminate the changes I am seeing, it’s the brain stem that is probably being affected. It bears out my feelings that it is the disease that is causing these symptoms, not organic disease. The latest thing is biting his tongue when chewing. Have you noticed this as part of finding eating and swallowing difficult?

 

[AliceA]

I am half way through the first. Planned to do more today but it has not happened!
I rushed so my husband could watch Rugby as he wanted too, now he is not watching it.
So just relaxing on here before getting on with things again.

No, my husband has not had a trouble with biting tongue. The SALT team did teach techniques to use when ill in 20I5, the diet is soft so not much chewing needed. He does have bread but I make sure the content is moist enough. Perhaps slightly softer food?

All Poppy's comments were similar, about not caring and refusing to care, nothing else. I hope she gets the help she needs.

 

[Grahamstown]

The SALT team did teach techniques to use when ill in 20I5, the diet is soft so not much chewing needed. He does have bread but I make sure the content is moist enough. Perhaps slightly softer food?

He prefers toast and has managed so far but now has complained of biting his tongue. I tend to give him softer foods but shall do it more now. He needs lots of water to help with swallowing too. Thank you!

 

[AliceA]

He prefers toast and has managed so far but now has complained of biting his tongue. I tend to give him softer foods but shall do it more now. He needs lots of water to help with swallowing too. Thank you!

Toast is off limits, a crumpet with butter or honey as a treat is manageable. Ice cream and jelly are banned too, this because the foods can split into two textures if they melt at different rates. Sips of water between bites too.
Dysphagia is common in older people, it was only diagnosed because it was thought that ingestion of food caused the pneumonia. Small bites well chewed using the mouth as a mixer. I do avoid distraction at meal times as the swallowing needs concentration.
Salads are not good either, also skins e.g peas beans etc. Good luck

 

[Grahamstown]

Many on here are really heartbroken and grief stricken

How true especially as the disease progresses and new symptoms appear! This swallowing issue is very new and I am having to get to grips with it.

 

[Mudgee Joy]

Hi @Poppyxxxjane and @Grahamstown - funny question really ! I can answer it for myself . Why am I his carer??
Why do we love them still and care for them ? I am afraid that for me it’s a necessity - a payback for the good times - through sickness andvin health etc - I can’t imagine otherwise but do need help to manage - I think i will survive as long as he knows me, and I can manage.

I had two nights off and just worried through the first - relaxed better on the second. Paid carers do manage better - they are not emotionally tormented.
My husband has been home only 5 hours and I have raised my voice when he went to spit out his dinner in a cupboard - thinking it was the bin! . Just have to apologise, smile , try harder . Not easy.
By the way Grahamstown - I think the respite weekend turned out pretty good and could get better !! Love MJ

 

[Mudgee Joy]

PS my husband swallowing and spitting up I think is fairly different - ice cream and milkshakes are most of what works !! He has a collapsed muscle in the aesopgohus !

 

[AliceA]

I have oesophageal problem, i have ongoing checks for this. I find icecream is very soothing as is almond milk.

About the dysphagia, it was explained to me that the swallow action is very complex by the SALT nurse.
The airway has to snap shut just at the right moment.
This is where the double texture can cause a problem I believe. Jelly, icecream etc.
There is a Swedish tool to strengthen the muscles, my husband used it for a while I think it helped.
A Swedish friend sent me details, it is not cheap. I had to buy from Sweden.

Many people get a pouch so food can get trapped. My husband has a 'layby' not as deep as a pouch. It can trap food and be coughed up much later or be injested into the airway causing pneumonia.
It might be worth getting your husband checked out, sorry putting another job on you!
We had the SALT nurse do a home visit. The test is quite long, she was with us about one and a half hours.

My husband has to put small amounts in at a time, chew until one consistency, swallow, dry swallow then sip water. This is partly why he cannot be left, drinks need to be sipped, no gulping back. For a while drinks were thickened, this is not very palatable. The problem then arose about drinking enough.
When I am not here he could choke. He may choose something not suitable because he has forgotten.
We seldom eat out as it is too much of a problem.
I relax at family occasions as there is help, transport etc.

My own consultant said I should not have high BP, she sees a retired woman in her eighties!

 

[Grahamstown]

Particularly tearful today even though I was out this morning at a U3A group. I left a snack and the coffee in place but neither had been touched. He would starve I think, simply don’t know. I am struggling emotionally today, feel that most of the family simply don’t want to know. Neither of his sisters seem able to do anything, not even call him occasionally, but then how could they when they have no conception of how he is deteriorating. Will feel better tomorrow and must get the car washed, something mundane to occupy me.

 

[AliceA]

So sorry that you feel so bad, sometimes it just catches up. A big hug and love. X

 

[Mudgee Joy]

Many people get a pouch so food can get trapped. My husband has a 'layby' not as deep as a pouch.

My husband has to put small amounts in at a time, chew until one consistency, swallow, dry swallow then sip water. This is partly why he cannot be left, drinks need to be sipped, no gulping back. For a while drinks were thickened, this is not very palatable. The problem then arose about drinking enough.
When I am not here he could choke. He may choose something not suitable because he has forgotten.
[/QUOTE]
Alice you have exactly described my husband’s problem - he has the pouch - they say nothing can be done as it’s too big an operation !!-!but I’ll take on board what you’ve said about small bites - norm if off throwing up as I write this ! So depressing !

 

[Mudgee Joy]

Particularly tearful today even though I was out this morning at a U3A group. I left a snack and the coffee in place but neither had been touched. He would starve I think, simply don’t know. I am struggling emotionally today, feel that most of the family simply don’t want to know. Neither of his sisters seem able to do anything, not even call him occasionally, but then how could they when they have no conception of how he is deteriorating. Will feel better tomorrow and must get the car washed, something mundane to occupy me.

I am just the same - spend yesterday crying and now have a head ache - serves me right - the weekend away was good for him - but then I crashed because he keeps no food down and is like starving in front of me !

 

[Grahamstown]

I did get the car washed and got back to the usual evening but it is mentally exhausting. My daughter called and she is a great support. I had a message from my son first thing this morning about completing my grandsons birthday present which I had arranged back in January and never heard a word of thanks, so it really caught me on the raw. One’s nerve endings are very raw when dealing with this awful disease partly because you have no one to talk to about it. Your kind words are so consoling @AliceA and @Mudgee Joy and I know you both have a rough time. Talking about it here does relieve feelings.

 

[AliceA]

Tears came to my eyes when I read this, it is a good job we have each other on here.
When I feel down I often read through the posts and think it could be worse. No one really understands outside our situations.
My heart turns over when I see how frail my husband seems. I am trying to build him up after his last chest infection managed at home. Our daughter and a doctor blithely say give him cream cakes. I hardly think that is the best with vascular.
So I am increasing the protein, adding egg of skimmed milk powder into dishes. When he is tired he seems to shrink.
These headaches must be catching! I had one yesterday too, with earache. My ears seem very sensitive to noise and get quite painful.
Tomorrow a car is coming to pick my husband up for a trial at a day club. I tried so hard to no avail and now this has suddenly happened. I feel like I am sending a child to first day at school!
It should give me four precious hours of not monitoring. I shall possibly sleep!

 

[Grannie G]

You are all facing such struggles.

It`s heartbreaking to read how isolated and exhausted your caring roles have left you. I know I`ve been in the same place but reading your posts @Grahamstown, @Mudgee Joy and @AliceA makes me wonder how we survive.

 

[maryjoan]

Poppy, Many of us care because we love even when it is not returned in the same way.
Many on here are really heartbroken and grief stricken when a time comes we/they can no longer care hands on.
They suffer financially and emotionally to continuing to care, visiting and being an advocate on the behalf of someone who through no fault of their own is vulnerable.
Because some people rant on here expressing their frustrations does not mean they would willing stop being a Carer. Hands off or hands on.

Choice is a bit of a catch22. What choice?

What choice indeed?
I went for a blood test last week - and actually sat in the surgery thinking that it was almost a treat to be out of the house doing something for myself that was not focussed around him..........oh, come on, I was there for a blood test !!