Update on Lionel

[connie]

Thank you for your continued support. Seems a very long journey sometimes.

Posted by Beckyjan: I hope your reflections on Easter give you some comfort.

Just a phrase that the minister used today Jan, but certainly made me see the bigger picture. Of course it is not me living with the confusion and anxiety in my mind. I am the fortunate one.

 

[Izzy]

Thinking of you so much. It must be hard to watch reactions like the one to Old Rugged Cross and not know what might be in Lionel's mind. Take care. Izzy x

 

[nellbelles]

Connie

Of course it is not me living with the confusion and anxiety in my mind. I am the fortunate one.

But maybe trying to comprehend how a loved one feels and failing is just as hard.

 

[Winnie Kjaer]

Hello Connie,
How right the minister was, we tend to forget that sometimes, but that does not make the pain of watching our loved ones suffer any the less.

I understand how you are feeling when your husband is fed, my husband has the same problem. I know you have said on several occassions that eating and drinking is the only pleasures he has left in life, but just wondered whether you have tried him on a pureed diet. A lot of people think it is horrible for the sufferer but you can make it look appetising if you liquidise the food individually and dress it up, you may not even have to liquide the veg if you overcook them, but at least the meat and roast potatoes could be pureed. There is a well know food firm who deliver frozen meals at home who have started making these liquidised meals and they even shape the food in the right mould of whatever the food is. I don't go that far but I do make it interesting looking. My husband can eat nothing else apart from a dunked Rich tea.

Just an idea to save you and your poor husband suffering when he is eating.

Please take care.

 

[connie]

Winnie dear, thank you so much for your kind thoughts and advice.

Lionel has been on pureed food for the past three years, and he has always derived great pleasure from his meals. Indeed because his meals have been pureed down and often mixed together (my choice) his intake of a balanced diet has kept him with healthy skin (despite being bedbound) and a strong constitution.

It is the illness now taking it's toll I'm afraid. His swallowing reflexes have gone.

I know the home, along with myself, will still do everything we can to encourage him to eat, little and often. Trial and error.

 

[Winnie Kjaer]

Hello again Connie,
Thank you for putting me in the picture, I did not realise that Lionel was already on pureed food. What a shame he chokes on this too.

My husband chokes too, but I find that if I give him one mouthful of food, a sip of drink once that has gone, then food, then drink, and so on, it helps getting the food down. He has to swallow each thing first before the next goes in. A very slow effort and lots of patience is needed as you well know., but fortunately it works for us. Somehow he knows when he is struggling and then refuses to open his mouth. Usually speaking he then has a mighty sneeze which seem to clear him out and he can start slowly again.

Your husband sounds even further along and worse positioned than mine, I am so sorry.

Please take care.

 

[Skye]

Dear Connie, just sending you a hug.





Love,

 

[susiesue]

Thinking of you Connie and sending lots of love.

 

[Norman]

Hi Connie
thinking of you and sending love.
Warm wishes
Norman x

 

[Mameeskye]

Connie

(((((hugs)))))

It is so hard to watch as the swallowing reflex starts to go.

Love

Mameeskye

 

[gigi]

Late as ever Connie,

Sorry to hear that Lionel is having such problems swallowing, it can't be easy to witness.

You've had a rotten year and I do feel for you.

Thinking of you both.

Love xx

 

[maryw]

Dear Connie, as ever I really admire your honesty, loyalty, loving and care. So sorry it is so painful for you. xx

 

[alfjess]

Dear Connie

It is frightening to watch them choke on food or drink.

I feel for you and Lionel.

It is a lovely care home you found for Lionel.

Hope things improve

Love
Alfjess

 

[Margarita]

 

[zoet]

Im so sorry Lionel is going through this dear Connie, and i know that you must feel so helpless. It goes against our every grain to watch our loved ones struggle to take nourishment. All i could do with my dad was to offer tiny spoonfuls of yoghurt/fromage frais and Ensure. Occasionally, and even toward the end, he would tolerate very soft chocolate, which a tiny piece of melting in his mouth seemed to bring him pleasure.
Its very hard for you, and a sad indicator of his decline. Sending my thoughts and love to you.xxx

 

[shelagh]

Dear Connie,This is one of the cruelest times. I can only hold you both in my thoughts and prayers.
With love
Shelagh

 

[connie]

Lionel had a strong seizure on Thursday evening, and things were quite fraught for a while, however pulled through.

Slept most of Friday. Today has been a day of sobbing. My lovely man is in mental torment and it is showing. The crying made feeding even more difficult today, he is so unhappy. This illness is so very cruel.

I am beginning to think it is taking it's toll on me too.
I cut right through the electric cable of my hedge trimmer yesterday - thank goodness for circuit breakers - and then had to repair same. (I am nothing if not capable at least)

Then after a soak in the bath I started to cook my supper, wrapped in my old, comfortable, towelling robe. Lost in thought about Lionel I managed to set fire to the sleeve of said robe.

All because really my mind is elsewhere.

It is heartbreaking to sit and watch his anguish, and yet when I am not with him my thoughts are all the time.

"When will this long journey end" - and yet I cannot bear to contemplate.

(Just an update friends)

 

[jenniferpa]

Ah Connie - not a lot one can say but thinking about both of you. And for goodness sake - be careful.

 

[danny]

Connie,very sorry to hear your news.
Alot of you are having a very rough ride at the moment and I wish I could help in some way,but I can`t.

My thoughts and prayers however are with you and your husband.

 

[DeborahBlythe]

Dear Connie, I'm sorry your day has been so fraught and Lionel so upset. Please take care of yourself.. Lionel needs you in one piece! Love and kind regards
Deborah x