Swallowing problems...what can I do to help?

[laroux]

Hi everyone,

We've encountered a new problem. Bob has been on a feeding tube for almost 10 months now. It was mostly an inability to chew his food, more than a swallowing problem. His weight had dropped down to a dangerous level, so he had the choice of feeding tube or to continue to slowly starve to death. Anyway, lately he has not been able to swallow his own saliva, and heaven knows there is an over abundance of that! He takes a med called "Buscopan" to help with the slobbering/drooling. Is there some type of suction device, or some method of assisting with this inability to swallow?

Thank you,

joan

[dorothy-thompson]

Dear Laroux

Yes there is, apparently it is rather like the suction machine that the dentist uses to suck out the water from your mouth during treatment.

A speech therapist recommended one for my husband, we are still waiting for it nearly 6 weeks on.

Take care

Dorothy T

[cabbagecottage in reply to dorothy-thompson]

Will be interested to hear how you get on with it , That is if and when you get it . We have been waiting months to see a speech therapist .

[Hidden in reply to cabbagecottage]

We were put onto the SALT (speech and language therapist) quickly but I was always able to contact them through the hospital switchboard-either for the number or directly.I would definitely pursue this as time is of the essence with PSP and medical professionals unused to this condition are not aware of that. Don't be afraid to badger them for what you need and also try PALS (Patient Liaison Services) as they are brilliant at triggering faster responses and dealing with any professional or medical people who have not provided as promised. Again they are based at hospitals so ask the hospital switchboard for their number or google them!

[dorothy-thompson in reply to dorothy-thompson]

The "add-ons" to the medical profession are really rather a joke aren't they Cabbagecottage.

Dorothy T

[Hidden in reply to dorothy-thompson]

Dear Dorothy T, I agree.We have waited five months for the continence nurse to visit as Dad has been left sitting in urine up to his arm pits and so I am now paying for larger pads as they are not provided under continuing care, and as the home seems unable to provide smooth pureed food it has been suggested by the SALT nurse that I buy in prepared pureed meals. I cannot understand what is going on. In the previous home where my father was for five years we had no problem with pads and why can the SALT nurse not insist that soup with a sandwich mashed up in it is not pureed food and so please could they organize something with the cook. The 'afters' provided at supper time is cake, which of course Dad cannot eat or yogurt which upsets his tummy. Oh dear, the whole thing is driving me mad.

[oops54 in reply to Hidden]

`hello dorothy my husband has a catheter has dad one for eighteen months.

[Hidden in reply to oops54]

Dear oops54, Thanks for your reply. I do not think Dad needs a catheter, I think the problem is the routine in the nursing home. The residents are left too long without a change after their evening meal and often staff are late for the evening shift meaning that they, quite often are not changed until nearly 10 pm at night. These night staff have as their first job to go round changing everyone and as you can imagine with thirty two people to see to they are not happy bunnies and are in a rather bad humour! Several people are in the same situation as Dad and their beds have to be completely stripped. I go to the home every evening at this time to check that Dad is treated properly and the staff do respect me for this and are friendly. It is that just for me, I cannot rest knowing that I have to check on things all the time and of course, I cannot be there 24/7. Dad is in hospital now and I have told the consultant that if he has to go back to that home I will smother him in the ambulance on the way there! Goodness knows what will happen now. Am pushing for hospice care. It is no use to talk to the manageress, so there is nothing that I can do about it, it would result in unpleasantness, I just need to get Dad out.

[oops54 in reply to Hidden]

dear nader , I am so sorry for you I have a place for my husband,maurice ,in a nursing home ,but I keep putting it off,he has just turned sixty and I can't bring my self to put him in he is high care .I get a lot of help at home .but I know it is different with our mums and dads, what i'm about to say may sound awful ,but I hope he dies before he goes into a home.

[Hidden in reply to oops54]

Dear oops54, What you have said is not terrible at all because you feel like this as you do nor want Maurice to suffer and you want to be close to him to see that he is looked after as well as possible. I had no alternative with my parents as they both 'collapsed' at the same time and for a while I had them both in hospital beds in my front room. First Dad had to be admitted to hospital and then Mum and the consultants said that it was too much for me to cope with any longer so they both went into a nursing home together in a double room. That place was a double nightmare and my mother was found at 10pm at night dead, sitting up with her eyes open. The senior nurse had turned up late for the night shift and so she had not been discovered earlier. I had been there at about 6pm and nobody told me that she had not been eating or drinking for days. that manager was sacked and staff sent for re-training! Mum had been there only 13 days. I was appalled. Mum had asked to come home and I told her I would see what I could do but that Dad could not stand any more as so it was difficult. The last thing she said to me was that she loved me and I think she decided to end it all as three days later she died Our nursing homes in London are not very good , I am sorry to say, and it is a recognized fact by many doctors and consultants. In the main it is because of the demographics and the transient working population I am determined that my father has a better deal, but it is difficult to achieve, that's for sure; so hang on to your Maurice for as long as you can and check out the nursing home, you may well be lucky!.

[oops54 in reply to Hidden]

thank you for your reply Nader. and happy new year, i can understand how bad you feel Nader,we also had our Dad in a nursing home that was back in the eighties ,he had a turn and they put the oxygen on him the doctor came in spoke to the nurse,we sat with him all night .the doctor came back the next morning said he should not have this oxygen ,he took it from him and he died, my point is a few years later when speaking to a person who worked at the home said oh ,we used to leave the oxygen on so the next shift would have to organise the person who had died. its not right there is no dedication .he deserved better ,he raised us three children our mother died when we were four,six and eight ,and worked hard ,only to have a stroke three months after he retired. as do your parents Nader. im sorry to sound so negitive but i already feel better,just by writing about it .cheerio

[Hidden in reply to oops54]

Dear oops54, I know what you mean when you say that you feel better for telling me about what happened in the home to your Dad. Actually, you have helped me too. I have not slept all night thinking, in part, that I am going slightly mad as it felt like I am the only person who has these awful things going on in the care homes. At least I know now that others are aware bad things are happening, and actually quite frequently I am sure. But it is just unbelievable at the lack of dedication seen in some carers. It is so depressing and I don't know what the answer is. I seem to come from another planet and do not belong here, just cannot make sense of it all. Today I went to feed my father his evening meal and was told that they want to move him out to another nursing home. When I arrived he had the nebulizer on so I had to wait about 10 minutes. Afterwards I had to ask them to fetch the suction machine to clear the muck from the back of his throat. You would have thought I was asking for the moon. They are just not bothered He also has a saline drip as he cannot drink, but the mask of the nebuliser causes him to have awful facial and jaw dystonia movements and it was impossible to feed him afterwards. They did not pass after two hours and I had to leave. I asked why had they not waited until he had eaten before doing it. They said they usually work on another ward and it says in the book to do it at 6pm and so they did it; that is supper time! No nurse or assistant batted an eye lid. It is just accepted that he will miss that meal. He had eaten only ten teaspoon fulls of puree all day.They have no intention of getting advice from a specialist, just want rid of him to go and starve to death somewhere else and this is a hospital ! I called in the chap arranging the care home move and said to him 'Do you really think it is fair to both him and any nursing home to send them someone like this?, I expect he will report back to the consultant tomorrow.The hospice idea is going to remain a dream I suspect as they now say Dad is going to live three months, last week it could have been the next day according to them! That's why they wont pursue the hospice option. How do they know anyway?. It feels like I am talking to idiots. It is the watching of the suffering that gets to me. I just cannot stand it any more..

Your Dad did well by you all and deserved better you are right to feel upset..My Dad has been a good father too and it is just not fair.

Any way, Happy New Year to you too.

[oops54 in reply to Hidden]

thank you Nader while you are sleeping I are awake my home is victoria australia.

[khils in reply to oops54]

If it helps.... I have my mother who is now 64 with psp in a nursing home and it has been the best decision. Don't get me wrong it was the hardest decision too. She is thriving in there, having fabulous care and I am regaining the mother daughter relationship again!

[oops54 in reply to khils]

hello Khils I am pleased to hear some good things about nursing home care, mostly I hear bad things the last thing I heard was staff hate looking after the men who can't look after them selves.i guess they mean showering cleaning and every thing else.but back to mum daughter relationship I think it is much harder to look after a parent,than a spouse i was at a carers meeting and there was carers some with a husband or a wife, and some looking after their mums or dads. Funny but the only ones that were finding things really hard was were the daughters,we all just listened they were really stressed out after saying what they needed to say.so I have told my children that if things become bad, then they have my permission to take me to a nursing home . Although hopefully not in the near future. regards and have a happy new year Khils

[oops54 in reply to Hidden]

oops sorry the last message was for nader im not so good with computers . cheers.

[laroux in reply to dorothy-thompson]

Thanks, this is what I'm wondering about, |I work in a dental clinic, I could just bring him along! Just kidding of course, but I thought there may be something similar.

joan

[stekelly in reply to dorothy-thompson]

dear dorothy t

my dad had one of these suction machines and it was the speech therapist it was his physio that got it for him so try a different direction to get it we did wait 9 months for physio and took threats of papers/tv/mp funny how it started tehe day after!!! good luck xx

[Paultsio]

Dear Joan,

"Buscopan" is subscribed for the 'side-effect'. The main product however is Glycopyrronii Bromidum, which reduces the saliva. The side effect of this product is that it makes my dad sleepy and reduces vision. We stopped using this product after one week. We are trying out an alternative product (based on herbs) which seems to help to reduce saliva. We'll keep on testing it for some more weeks. It is called "Pakinson disease' from TCM.

[Mandymoo8]

Hi

So sorry to hear you also have this cruel illness in your family. We lost our wonderful dad a few weeks ago to it. In relation to the swallowing/saliva we were advised to purée all dad's food then to add a thickener however near the end even this was no good and he chocked whatever. By this time they said it was too late for a feeding tube ( something we had asked for a year previously!) we had a huge problem with saliva as it was gathering in dad's throat and he didn't have the ability to cough properly to clear it. This distressed him greatly. At this point he couldn't communicate at all and we only knew he was in distress by his right leg moving up and down rapidly and his groaning sound. We were advised that a suction tube wouldn't work as it would need to go quite far down his throat which would cause him more distress. In the end they gave him a drug intravenously called hyoscine. This really did help so it's worth a try before your husband gets any worse.

I hope you get sorted with something soon. x

[laroux in reply to Mandymoo8]

Thanks for everyones help!

I live in Canada, so we'll see how quickly (or not) we get a suction device. If it is available here, should be.

joan

[carolinesimmons]

My husband has had a regular suction machine and, at first, used it himself with a rigid wand that he could suction saliva from his mouth. Now he could never hold and direct the wand but he has transdermal patches of atropine that help him control saliva. The suction machine is nearby in case the RN would need to do deep suctioning. We are in the U.S. so things are different here.

[laroux in reply to carolinesimmons]

thanks carolinesimmons! I wasn't aware of atropine patches, just the drops.

joan

[GrandPop]

My wife has PSP - I use a home suction machine as a last resort if she cannot manage her saliva see devilbisshealthcare.com/pro...

[laroux in reply to GrandPop]

Thank you for the website GrandPop, I'll see if it is available through our health care system, if not I can track it down on my own.

joan