Today we went to see the Doctor. We arrived armed and somewhat dangerous.
The pleasantries out of the way I started with my list of demands. Agenda eye drops, emulsifyer, sensative hearing, weight check and blood pressure.
Everything checked off thankfully I had taken advice from an audiologist friend of mine and knew who I wanted a referal for.
FIL has gained a little weight which I am pleased with as he had lost so much weight running up to diagnosis through worry.
Hopefully the emulsifyer will make him a little more comfortable after meals.
I feel as best as possible I am on top of his health issues. I do feel the Doctor may see me as an absolute viper who is notto me messed with. Which is fine as my manners are always on point and I'm never rude just well read and well informed. I have to get my FIL sorted and as much help as possible to stay him fir as long as possible. Xx
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Pooches
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Good for you Pooches it's the best way to be. When I take mum to appointments I often take a list so I don't forget anything . I also get my daughter or sister to tag along with us or both !!
Excellent job. Keep records of everything if possible. Sounds like you are stepping in to be your FIL's spokesperson. Try to keep in mind most things will take time to implement or test, hardly anything will move as fast as you'd like it to.
Yes, things move slow round here with regards to referrals hense the getting in there. Like I said to my FIL when I notice the changes I'm going to act on them as soon as possible but at least things are in the pipeline now. More importantly my FIL feels I am fighting his corner which in turn is keeping him strong and hopeful. We all know how this nasty diagnosis ends but as long as we keep fighting it and trying to find ways to assist living and independence we have purpose. My FIL although wobbly is still very mobile so he has upped his exercise to help keep strong. I'm monitoring him but so far seen no down side. He wants to have goals he wants to fight so I have to join him. I am really proud of his drive and attitude he's accepted there is no cure but he's not going down with out a fight. Hospital appointments and refferals to see what can be done they keep up going. I love this forum everyone has there own stories and each one inspires me. I know there is sadness and fustration but everyone is valuable and we all learn so much about ourselves our journey. Thank you for your support it is so valued. Xx
Is emulsifier the same as thicken up, which thickens liquids, to stop choking, my Ian is under the salt team and a nutritionist, he was 16 stone, but is now a debatable 11, as he is in a wheelchair and cannot weight bear it is difficult to get an accurate weight for him, we are year 11/12 so going well, I wish you all the best , it isn’t an easy road, by the way, are the eye drops for reduction of saliva? I get Atropine for this purpose, again it was some lovely person from our amazing site here that tipped me about them
I know the liquid is thick. But I don't think it is a thickener. It's just to aid food to go down smoothly and stop the reflux. My FIL currently is not showing signed of struggling massively with swallow but food tends to feel like its sitting heavy. He has changed the way he eats and has his heaviest meal at lunch and eats lighter later this seems to be working as he's suffering less. He has also gained weight as he had lost a fair bit due to worry. Also food just feeling wrong of tasting wrong on his pallet. He's also eating mor fish and pasta this seems to be suiting him for now! The eye drops are literally an over the counter drop as he often talkes of gravelly eyes. Will let you know how all of this works after a bit of time. I think we are roughly 5 years in and I couldn't be prouder of how he is coping with the massive life changes he has already conquered and his attitude to the future. I have no choice but to step up and stand by his side. Rocky road ahead we will walk it or wobble it and eventually roll it together.xx Thank you for your support xx
I find that Ian keeps food and drink in his mouth for a good few minutes before swallowing, but I will ask the nutritionist when she comes about the emulsifier.
We get atropine eye drops on prescription, although they have a short shelf life, about 3month I think
Hope all continues to go as well as it can in these days of uncertainty
Well done Pooches: You've got a really good handle on this business. You sound like you have a clear and practical - as well as appropriately assertive - approach to keeping FIL as well as possible for as long as possible. Believe me, apart from satisfying your values now, it will pay huge dividends to you when you have to face the grief of loss
The thing I learned early was that I needed to be assertive and do my homework.
Once this was established the dr. saw me as the expert and always agreed with me. After Chris died he complimented me on my role in communicating with Chris and felt it kept him going longer.
Always remember that most know less than you about your FIL.
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