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[Kayleigh]

Hi Fru,

How are you and Ed? Hopefully, you are ok and Ed is feeling a bit better now that he has got a new bed.

Like Ed, I don't have a very big appetite these days, and so have smaller meals and snacks throughout the day rather than big meals. I also have 1 nutrition shake a day.

It is good to hear that Ed's ability to swallow is good, but just in case he does need to increase his calorie intake, I thought I would share with you how I increase my calories with smaller meals and snacks.

I use butter, full-fat milk, cream and mayonnaise, instead of low calorie options. I find that individual pot desserts such as rice pudding, chocolate mousse, custard, cheesecake, and trifle are good as high calorie snacks and they don't take very much time or effort to eat.

Sometimes, I have a small ready meal with some veg, and I pop some butter on the veg for extra calories. If I have a pasta meal like spaghetti bolognese, I put some grated cheese on it. I also like cheese spread, Nutella or smooth peanut butter on bread or toast. If I have stewed fruit or sponge puddings (sometimes I get individual puds that can be microwaved), I always add custard, cream or ice-cream to them.

You probably already know about these ideas for increasing calorie intake, but I thought I'd share them with you, in case any of them are useful.

I have to admit that it's taken some getting used to, having to go for the higher calorie options - because in the past I've been a regular member of slimming clubs, and had to watch my weight by going for the low calorie options!

Hopefully, Ed is finding his new bed comfortable and is able to get a good night's sleep. I hope that you are able to get enough rest and sleep as well.

Love and best wishes to you and Ed,
Kayleigh x

[Terry]

Hi Fru,

When you eat slowly and don't have much of a appetite, a small plate of hot food is much better. Even if you give him a third of a normal helping it will remain hot and he will probably moan its not enough. Just blame me, laugh and get some more.

A electric over blanket might be good especially if it's on a remote plug that he can turn off and on easily.

My bed room is quite small as well but it has double doors into it.

Love Terry

[Kayleigh]

I agree with you Terry about the smaller portions. I have to eat slowly because my swallowing is not as good as it used to be. Sometimes a children's size ready meal is a good portion size for me - and I never have any problem eating a yummy chocolate mousse for afters!

Love
Kayleigh x

[Kayleigh]

Hi Fru,

I hope that Ed is feeling a bit better now and that his new bed is comfortable for him. Hopefully you are getting enough rest and sleep as well.

Love and best wishes to you and Ed,

Kayleigh x

[Fru]

Hello Kayleigh It's been a tough week. Molift raiser wasn't enough to support Ed and he slipped through. Used the Elk with a friend but Ed gets in terrible panics. Arranging for an Xray. Bed bound since last Monday night. NHS intermediate care coming in twice a day but can't do much as no equipment to move Ed. Awful chest. Local hospice wouldn't have Ed for respite while we stabilise things. I think it's going to be another busy day. I will start a new thread on update. Have a lovely day everyone
Fru xx

[Kayleigh]

Hello Fru,

I am so sorry to hear that things continue to be very tough for you and Ed.

It is such a shame that the hospice won't have Ed to stay, as it sounds like some respite care would be ideal for him at the moment. You are a wonderful wife, always busy caring for your husband, and it sounds like you could do with more time to rest. Hopefully, the hospice will be able to offer some respite care, at some time in the near future.

It must be very frustrating that although the NHS have provided carers twice a day, they can't be more helpful because you haven't been provided with the right equipment for moving Ed. Hopefully, your OT will be able to source some suitable equipment very soon.

I feel for you and Ed, and it must have been a terrible shock for both of you when he fell from the Molift. Hopefully, Ed's GP is able to prescribe some effective painkilllers, if he is still in pain after falling.

Also, if Ed is becoming distressed and having panic attacks regularly, there is probably some medication that his GP can prescribe, to make him feel more relaxed and less panicked about things.

I hope you have support from family and/or friends close by. If I didn't have this wretched disease myself, I would offer to drive to where you live and help you out with things. I'm so sorry that I can't be more helpful with advice etc.

Thinking of you and Ed, and hoping that his chest infection clears up and he feels better very soon.

Love to you and Ed,
Kayleigh x