Swallowing - slightly yucky - sorry

[sarahc]

Dear all, I just went to visit my mum today who has very advanced vascular dementia and who is an excellent care home in the north-west. She cannot swallow AT ALL - her drinks (squash and tea) are thickened to make them go down easier but even then she chokes and coughs. Tea today was soup and sandwiches - neither of which went down - at all - half a sandwich maybe. She has a nibble, stores it in her mouth and then splutters or chokes coughing up lots of really thick white mucus. This mucus is ever-present and makes her gurgle when talking - though her power of speech is almost nil. The care home staff say it is because she has lost the ability to swallow. I currently have lots of interesting career opportunities in West Africa where I feel more at home - I have worked in Mali and Senegal for 20+ years on collaborative cultural projects around music mainly and mum (and late dad - whom I adored) have always supported that - but how can I leave her now ? On the other hand I can get back in less than 24 hours and on the 'other' other hand I thought in August she would not be around by Christmas and it is now May so who knows ?? .. but not being able to swallow ??? She is all skin and bones and has no cognitive function at all, although she did recognise me today . Home staff say GP will not prescribe Complan or fortifying drink as it comes back to the question of swallowing.
What to do ? Should I go away for, in principle, 6 months - tho I can come back at short notice. My career /short-term happiness dictates I should, plus I love being in West Africa more than here..but I feel i can't leave her even tho i have every confidence in the home..however, there is noone else to help out really. That is the problem.
What to do , please advise !! Please be brutally honest as to whether I should go or not. I would really appreciate that. Many thanks.
S x

 

[connie]

Sarah, only you can call this one.

I would say "follow your heart" if you know that 's what mum would say if she did not have this awful illness.

I am not you, but will pray that you make the right decision for you both. Love n'hugs,

 

[jenniferpa]

As Connie says, only you can make this decision. All I would say is think how your mother would react if she were well: would she expect you to put you plans on hold? I suspect not. Having said that, if you do do this, try to ensure that you have sufficient funds for that emergency trip back, and by that I mean however much an airline will charge for a fare tomorrow, because it's unlikely that you'll have much warning. I live in the US, my mother's in the UK. I get back as much as I can to see her, but I do have several thousand dollars earmarked for just such an emergency.

Jennifer

 

[Nell]

Such wise words from both Connie and Jennifer. Only you can judge how you will feel if you are not there when she dies. This may sound brutal (I'm sorry - don't want to be horrible!), but it does seem that your Mum is no longer aware of anything sufficiently to know if you are there or not. She did recognise you, but was it enough to make you feel she wanted you to stay with her. . . .??

If you are confident she cannot know whether you are there or not, and you are confident that her care is as good as possible, your decision can be entirely personal. Only you know how you will cope with this - and even then, none of us knows for sure till it happens. I'm so sorry you have such a difficult decision to make. Thinking of you.

 

[Amy]

Hi Sarah,
A tough decision. I dont know what decision I would make were I in your shoes.
I do know that if I chose to go, I would make sure that I had said my final goodbye, just in case - there may not be time to fly back. But my mum is only 14 miles away - and who knows, there may not be time for me to get to her.
Whatever decision you make - believe that it is the right one - and go with it whole heartedly; if you stay, make the most of the time with your mother, if you go, give it your all and have no regrets ,as a tribute to your mother. Either decision will be right Sarah - you are in a win win situation!
Love Helen

 

[Grannie G]

Hi Sarah,

So many people keep a vigil at the sick bed of their nearest and dearest, then leave them for a few minutes, only to find they`ve died whilst they were away.

Has the Home given any indication how much time your mother has left?

You ask for `brutal honesty`but you know there is no right answer.

Will your mother benefit from your presence? Will it help her feel better, be better?

Will work of the same calibre as the work you are now considering, be available again?

You know this is a decision that has to be yours. Either way, there will be a regret. Which regret is the bigger one?

All the best and take care, you still have a life to live.

 

[Brucie]

Hi Sarah

your post strikes a nerve with me at the moment.

My Jan, who has started to have problems swallowing, and whose drinks are now thickened to try and help, is in a similar situation.

She has always been very sensitive to the consistency of food - bones, lumps etc.

These days she stays that way, and stores anything that she finds 'unusual' in her cheek. Such things as bits of apricot skin, small lumps of meat.

The are not obviously there, but when she tries to get to her hands and knees, gravite seems to expel them in a yucky stream- I've become a great spit dodger these days.

However, the saliva is not the normal thin stuff, it is quite gooey - perhaps as a result of thickeners.

To respond to your situation - frankly, there is not much I can do except visit her with a handful of paper towels. The staff can deal perfectly adequately with the situation, though it is distressing of course to me - as your Mum's is to you.

You might decide to stay, and after 6 months then think it is stable and then go to Africa. The next day something might happen that means you have to return.

What I am saying is that there is no predicting when things will happen, or how long it will be until they do. Since there is not a lot you can do, I'd suggest you follow whatever course your heart and brain can agree on. Since you can return at short notice that is a very good thing in favour of going away.

As others have said, it is a decision only you can make, but this darned disease can have us on standby for decades, and that does nobody any good.

 

[nicetotalk]

I agree it is a difficult decision, have you been told that the end might be near, sorry to say this but my mum went thatway towards the end of her life.
You ask yourself how would it make you feel if you went away and then she passed away, could you deal with that,would you feel guilty would you wonder what if i know its easy for me to say all this but i think it issomething to think about. You can only go with whats in your heart i dont think its a question of would my mum know iam here or not its easy for me to say iwould stay with her as my mother has now passed, and i would give anything to have her back. Iam not trying to make you feel guilty thats just my thought. At the end of the day it does not matter what anyone else thinks or has to say it is down to you at the end of the day

you take care ofyourself
kathy

 

[sarahc]

What to do ?

Dear friends, I am in such a dilemma - do i stay or go ? I have many interesting opportunities in Africa and nothing much at all here (my work is as a health consultant for organisations such as Save the Children etc and also in the field of culture with African musicians and performers - none of it can really be done from here as you can imagine !!) I am an only child by the way so I am the main contact/decision-maker for my mum.

Thanks for all your thoughtful replies - I feel, in my heart, that I should go to Africa as I CAN get back within 24 hours in principle. As Brucie says, to paraphrase, you can't be sitting around held almost hostage to an illness about which you have no idea when it is going to end.. Also having talked to friends, some of whose parents have dementia, there is no guarantee that you will be there anyway when they pass away. I stayed next to my gorgeous and completely lucid 92 year old dad for 3 weeks, night and day, 2 years ago and he decided to leave this life in the 45 minutes I went to Tescos ! .

I have googled dysphagia (difficulty swallowing) and dementia and it does seem to indicate that the end is near .. but when ??... it's not that I want to precipitate it but I just want to know - impossible of course !!. I would do anything to be with my mum when she passes but I can't put my life on hold now in the event it might happen tomorrow or, then again. might not.....
What to do ????
Thanks for your help,
S x

 

[connie]

Sarah, if you know in your heart that it is then that is the right decision.

No two situations are the same, no two persons will ever feel the same. As long as you put all contingencies in place, ie. monies for travel etc. then you really just have to go for it. IMHO. I feel sure that whatever, your mum will be proud of you.