Feeding tube or not?

[maryam]

Hi everyone,

My mother has been diagnosed with PSP since the Fall of 2011 and it's been a real hard journey.

I have been reading this site for a few years and really appreciate your valuable comments.

My mom has lost some weight in the last few months but have been eating well until the last month and then all of a sudden in the two days having real difficulty swallowing.

We are at a point we really have to decide what to do? I have prayed that God would take her home before we have to make such decision.

Seeing her beautiful youthful skin at 81, how could we let her starve to dead. Other than her mobility and slow speech, she is still a strong fighter.

Please share with me the reasons for why and why not. Especially those who have made the decision before. I really appreciate your comments and experience.

From a worried daughter in Vancouver, Canada.

[kryste]

Hi some like the idea some don't but to be real about it this is progressive unless they come up with a cure the swallowing only gets harder and harder I personaly had the tube put in for my Aunt Bev not that we use it but for when the day comes that she can no longer swallow its hard now and she has such a hard time but refuses to give up her food I do use it to make sure she gets plenty of water because she hates water pepsi only , and when she is having a hard time i crush up her pills and give her them trough the tube , that day will come and when it does I will be able to make sure she has plenty of the daily nutrients she needs I am so sorry about your mom this is the worst sickness I have ever experienced god bless you

[maryam in reply to kryste]

Thank you so much for sharing. They are scheduling her for a swallowing test soon so after we find out more we will make a decision. God bless you too as you care for your aunt.

[OzzRod]

Hi Maryam.

It's a very individual choice, but one that has to be guided by what the patient wants. My 63 year old wife was formally diagnosed with CBD/PSP in January 2011 but now can no longer walk, hold things and is completely dependent on my care. Swallowing difficulties began just over a year ago and since then she has lost 30 kg. However her memory and cognitive skills are still intact and while she cannot verbalise her thoughts, the use of simple direct questions requiring yes/no hand signals, or use of an alphabet board on a good day, allows us to determine her needs with some confidence.

She made it clear that she wanted to have a PEG fitted and this was done back in March. I now inject all her nutrition. Is it worth it? Very much so. Her weight loss has stopped (a dietitian worked out what inputs she needed); she still chuckles in response to funny situations and her face lights up whenever family members visit, especially our only grandchild who is now only 18 months old and just starting to form some sort of relationship with her. Close friends initiate a similarly appreciative response. So while this capacity remains, she is keen to persist with her PEG. She does suffer discomfort from dry mouth and I try to alleviate this by dribbling small amounts of water over her teeth and gums, giving her small water ice-blocks to suck, and by putting small smears of flavoured (generally citrus) gels at the front of her mouth.

I have no idea how long this treatment will be favourably received, but it will be continued for at least as long as she continues to enjoy the social interactions it permits.

Be guided by your Mum.

[shasha]

I HAVE TOLD MY FAMILY THAT I DEF DONT WANT A PEG FITTING..... I HAD THE EXPERIENCE OF BEING IN HOSP WUTH A LADY WHO HAD HAD A STROKE AND WAS COMPLETLY DEPENDANT ON A PEG -- SHE WAS SO UNHAPPY AND USED TO CRY IOUT AT NIGHT FOR HER LONG DEAD HUSBAND ..... SHE ALSO NEEDED TO BE CHANGED LIKE A BABY - IT WAS JUST SO UPSETTING TO HEAR HER - I MADE UP MY MIND THEN AND THERE THAT I DID NOT WANT TO BE KEPT ALIVE JUST SO THE RELATIVES COULD COME AND VISIT - I AN SORRY IIF THIs IS NOT WHAT YOU WANT TO HEAR BUT YU DID ASK FIR All opinions #

love from shasha

[Amilazy]

Hi Maryam

I agree with Ozzrod, my wife has had PSP for at least 4 yrs, developed swallowing problems earlier this year after losing over 30kg SPeach therapist suggested getting PEG assessment. Margaret and and I discussed pros and cons and it was her decision to go ahead. Initially a nose tube placed as she had lost too much weight for safe RIG insertion (RIG is same as a PEG but inserted from outside rather than a PEG which is pushed out from inside, Margaret could not open her mouth wide enough due to other issues). Immediately she was less tired, happier and started putting weight on. She can now relax while feeding, no more chokes. I give her very thickened fruit juice or jam in very small amounts (tip of teaspoon) so she gets tastes and wets her mouth. It is one of the best intimate times between us as she is relaxed and able to smile. Everything liquid food, water and meds go through the tube. Eases my mind no longer worried about starvation, also no frightening chokes or coughs. But we discussed the situation and it was Margaret's choice.

Best wishes Tim

[cabbagecottage]

My mother nada peg after she had a stroke and lived for three years with any sort of problem with it .

I have spoken to John he wants divide when time time comes which I don't think will be too long ,

At least he can behydrated and medicated , kept more comfortable .. not anywhere as near stressful for him or myself knowing when he is responsive enough .

If he asks me what I think which I think he might do , he asks me everything else !!!!

Cannot make decisions easily . I will certainly go for the peg

[elizalou1710]

Hi Maryam Mum had a peg fitted 2 years ago without it she would not be here as she was rapidly losing weight , it makes administering meds v easy and she is well nourished and her skin is good , however the last two years have seen the onset of terrible symptoms contractures ,mute,unable to do anything incontinent ( although I believe it's. Only because she can't ask to go to the loo ) !!!! If she had not had the peg she would have been spared all this ! It's so difficult, sending hugs x louise

[maryam]

I really appreciate all of your honest and heart felt sharing. It gives me a much better perspective and help us in making the decision. I have learned so much from this site - not the medical side of things but your strength and courage! Thanks again. Maryam

[jimandsharynp]

Tube feeding is a personal decision. Made by the patient and NOT the family. This discussion should take place early on when the patient understands the discussion and can relate their wishes. The USA site CurePSP.org has an excellent video presentation on PEG feeding. It discusses it from the plus and minus sides without taking one side or the other. They also explain the process of inserting the PEG etc. Well worth viewing to become informed. My wife didn't want a PEG and voiced that early on in the disease. Tough to see them struggle and be unable to eat much. Very painful but if your love the person you honor their wishes. IMHO Jimbo

[maryam in reply to jimandsharynp]

Thanks! Definitely the final decision must come from the patient. I am actually watching that video right now. It is very informative. Thanks again!

[Mtorres9235]

I am married 31 years to my husband who has CBD. He has had this disease for about 11 years or more. About 6 years ago he was hospitalized after a fall and had lost so much weight that he was malnourished and fading. He is a fighter and although not able to say whether or not he wanted a peg tube at the time, we did put one in. He quickly got gained weight and got better and I asked him if that was what he wanted to do. He said yes. It was hard because he was the better cook in our family and missed eating and family gatherings around food but I could not bear to watch him starve to death. I do think it prolongs the disease but it is not all suffering. We have had some beautiful times together and I know he still fights to stay alive because he stills walks(1-2person assist). I am waiting for help from the medical community on this disease. Doesn’t seem to be much hope but starving seems so cruel a solution.