Robins wife
Hi there Robins wife, and good morning from Cape Town South Africa.. Care giver here for a friend who was diagnosed sept 05, he still has some use of arms, legs and whats more important, his fingers.. Loves his computer, and has a blog online, unfortunately in Dutch, since thats where he is from.. Climate in Cape Town (its summer here) does him the world of good, breathing in Amsterdam was getting more and more difficult for him, and talking without a cough after every word next to impossible.. After two weeks enjoying the salty sea air, and our humidity, the coughing went, and the sleeping has drastically improved. Not needing a machine (yet) but convince your husband that, in order in order to have a good nights sleep, he should do someting about the air quality of his environment. I noted that, after a goood sleep, my friend feels lots better during the day, and enjoys being alive imensely.
As for food, some tips from an amateur.. Scrambled eggs in the morning, without the toast. 4 eggs, the yoke from one egg, the whites from the remaining eggs, (keep the cholesterol intake in check) and he gets his proteines, no chocking, no chewing, and with different herbs every day on them (experiment, let your fantasie go wild) its always diffferent. Dress up the plate with parsley, a flower, a leaf or whatever to make it look different every day. NOt much work, and so much nicer, breakfast becomes a party in this way. Lunch is various fresh fruits, peeled and cut, and hop, all in the blender, also here you can experiment to your hearts desire, you will be amazed how many different tastes you can create using different fruits (adding ginger, carrots and what have you, give the fruit coctails an extra twist) and he just loves it.
Evening meals, you can prepare almost everything, using the blender again.. Potatoes I mash, and spinach i grind to a pulp, as i do broccoli, coliflower, carrots, beetroot and so on. Meat is mostly stew, nice and soft, and again with using different herbs and ingredients, it never has to taste the same.. Note that you just dont want to splash it on his (and your) plate, but make it nice and presentable, so in this way dinner becomes a party. Decorate the dinner plate again with whatever you can come up with.
We decided overhere that we are not going to prolong his life at any cost, he takes his dayly riluzol, and that's it. Better a great quality of the time he still has left, than being depressed, taking loads of pills and doing doctors visits and let ALS dictate his life. He has ALS, we accepted it, but ALS is NOT him ;-) In the two months that he has been here we had soo much fun, and cried only twice.. can you believe.. Loves his outings, going to the boulevard with the electric wheelchair (gives him independance) and walking the dog, trips in the car, it all takes loads of energy, and the next day he is usually very tired, and takes several naps. Its worth the sacrifice, having 1 fabuous day and a bit of an off day the next.. Quality of life is what its all about right now, cause lets face it, his days are numbered, we know and accept that.
And, you're not a care giver, you are a love giver, is what he told me recently, this way he can accept the help and dependance on me for almost everything easier..
So, dont be afraid, give it what you've got, try to be positive and dont let it wear you down..
lotsa love, you're a fab woman taking care of your man, here's a pat on your shoulder you hear !
Rick