A few weeks ago I posted my concern as my husband was booked to have a swallowing video. Several kind folk here encouraged me by recounting their experiences. We have just returned from the hospital and all went extremely well. One of my concerns was that he had to hold food in his mouth while the radiographer counted to three, at which point he had to swallow. We had a rehearsal with his Ready Break and mashed banana this morning. OK, it took even longer to eat breakfast but was well worth the rehearsal. He did brilliantly at the hospital. I fed him, wearing extremely heavy protective clothing and during the count, stepped back and watched the food go down. It was so interesting and even more important, nothing went down the wrong way. I told the speech therapist I would never feed him sandwiches ( they wanted him to eat a barium sandwich, very tasty!) and suggested we break some bread off and moisten it with something. She did, I'm not sure what it was but apparently it was tasteless and he managed to chew it and swallow with no problem.
I asked her what she would be saying in the letter to us and the GP and she said the PEG is definitely not needed yet. I said that the Hospice said it should be done before it is required and she said only when swallowing started to be a problem, which it isn't now. He does choke when he goes to the Hospice so she suggested I go at a mealtime and show them how to prepare the cooked meal for eating, how much to put on the spoon and how fast to feed him. When it was over she thanked me for doing her job for her and how it made things easier as my husband was so relaxed. We celebrated by going into the hospital Costa coffee shop and treating ourselves to a very calorific cappuccino each. I did get a very funny look from a lady on an adjoining table as I added the thick and easy. From her face you would think it was heroin.
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NannaB
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Glad it all went well NannaB! Another problem put on the back burner. Enough of today's to worry about! Still, it must be a relief to know during his choking sessions, nothing is going into his lungs. Long may it last.
S and I spent the morning at the hospital, seeing someone about Botox injections, but she said he didn't need them yet and probably wouldn't for quite a while yet. So that was good news!
Colin is adamant he doesn't want Botox. I think he thinks he will end up like those women who look like Barby dolls with fixed grins. We have never been told about it by anyone though, other than on this site. Who recommended it to you? The GP or someone else?
Our consultant referred us, after I complained that S's left eye was struggling to stay open. He said at the time, he didn't need it then, but as it was a long wait, 9 months, he sent S to see this specialist.
S is at the stage, his eyes close if he is tired, or not fully engaged with what is going on, wide eyed, if rugby is on the TV!!! He can open them straight away if you ask him. Apparently, it's when they can't open them quickly, or need to use their hands to open an eye, do they start think about injections. But it does weaken the eyelids, so not something they do until absolutely necessary!
It's like all these things, everybody abuses things that help others! Cosmetic industry with Botox, heron by drug users, glue sniffers etc., etc.,!!!
Having a lovely calm day at present. S gone to the hospice. Hard work, getting him up and out of the house on time, but worth it, for a lovely peaceful shower, cup of coffee, then I'm off to the hairdressers. Life can still be good, don't worry, I know it won't last, so going to enjoy every second!
Enjoy your time to yourself. Those few hours at the hospice seem to fly past don't they? I am going out to lunch today with 40+ others from our U3A Historic homes and garden group. On Wednesday Crossroads provides a sitter from 9.30 - 2.30 so I phoned them to see if I could have one a bit later so I could go out to lunch. The organiser said Sarah could still come from 9.30 but Julia would take over from her at 2.30 until 4.30. It wouldn't feel right leaving him all day so I'm getting on with paperwork upstairs knowing I can do it without being disturbed. I'm getting picked up at 12.....whoops, not long now. Had better start getting on my glad rags.
Hi, hope you enjoyed your lunch! It's my biggest worry about getting sitters in, is leaving S on his own, while I'm out having fun. Had Crossroads around this week, so had it well and truly drummed into me, (my sister was sitting in on the meeting as well!) that I have to let go and make sure that I get time for myself. Still struggling with the thought. I can cope fine, with him going to the hospice, as its S that's going out, whether I choose to do something with my spare time, is up to me. They are going to give me the money to join the gym again, but it's seems cruel to go, when that use to be something we did together, all the time. That is going to hard to come to terms with. I know I need to do this, I do miss going out to the gym, or our long walks. But how do I do it without him? Just the thought has reduced me to tears.
I used to think like that Heady until a year ago when the husband of someone I have known for years died of motor neurone disease. She wouldn't leave him with sitters, feeling like I did and you do. Then he died and of course she was devastated but she had cut herself off from most things and found it very difficult to join in again. She actually said almost the same words as you, how can I go on U3A walks without him. One day we will have to do things alone. I was invited to join a wine appreciation group. There are 8 of us and I'm the only one not a widow. I was encouraged to join and they have since told me they wanted me to get out while Colin was still alive as it will be far more difficult when he goes if I wasn't used to it. Today I had a great time. There were 50 of us and I knew most of them and had a long conversation with 2 I had never met. When I got home I told Colin all about it. Relayed best wishes from all those who asked me to and gave him a kiss from a woman who asked me to do that. I do get him involved as well though. We have 4 friends coming for a takeaway curry night on Saturday. I'll feed C first but then he can listen to all our chatter and our friends will acknowledge him.
If you leave your husband, you will feel bad to start with, I did but now I look forward to my regular sitters coming in. I don't always go far. Sometimes I potter about upstairs, in the garden when fine, do art work, phone friends but meeting friends is best. Do try and get back to the gym and go for walks. I am certainly a less grouchy person to live with now I have a bit of time to myself.
Thanks Nanna! You are talking perfect sense. My sister lost her husband many years ago at the age of 30! At the time, she accepted every invitation going, when I asked why, she replied. "Nothing can make how I feel better or worse at the moment, but one day, I will want to go out again and the invitations may have stopped coming, if I don't learn to accept them now!" I thought what wise words from one so young. So I am fully aware, what I must doing, it's just doing it, is the hard bit!!! I will go to the Gym, my sister will make sure I do. I have a heavy lump of a husband to look after, so my muscles need to be pumped up a bit!!!
Lots of love
Heady
Dear NannaB, congratulations to you both for a successful hospital visit. Regarding the PEG, Roisin had hers fitted about 18 months after her swallowing tests. By that time she was having great difficulty swallowing and we were having daily conflicts over her reluctance/inability even to drink the fortified fresh milk shakes and the prescription liquid food that she was supposed to drink - ultimately using a straw - three times a day. It was a very bad time for both of us, not least because her weight dropped from 52 kilos to 41 and she became too weak to walk even with assistance. I feel in retrospect that your hospice advice is correct or perhaps I should say that "when it is required" is before it gets to the point of your husband being unable to take enough liquid food and certainly before serious weight loss. Of course your husband would have to see it that way as well. Roisin did not take her decision until the last minute but the improvement was rapid; with proper regular nourishment she was able to walk again, with help of course, and her weight increased to a reasonable 47 kilos. And those terrible arguments never re-occurred!
Hi Christopher, thanks for your reply. The hospital staff have told me to let them know as soon as I notice a change in eating habits/choking etc and they will fit the PEG then. The Diatician came today when I was feeding Colin and everything slipped down with no problem. The same with the drink afterwards. She also said it wasn't the right time yet. She is going to come back with special scales to weigh him in his wheelchair, and regularly after, but as he was 15 stone last year, has a 38inch waist and wears large/ extra large tops, I don't think he has lost much. As the first specialist said, doesn't look under nourished.
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Is this normal? Am I expecting too much?
Respite but not respite
Letting drinks dribble out
Advanced/end of life stage
