We had to go to my daughter Laura's review meeting, we where told in October 2008 that she probably only had 6 months left but as she is as stubborn as her mother she is still here and still making us laugh. Her condition has really gone downhill, she is in a wheelchair full time now and has lost a lot of weight, she is unable to hold her head up for long periods and her speech is nearly non existent, she will talk very slurredly (if thats a word) for about the first 15 minutes of each visit and then it becomes too much for her. She has had 4 really bad choking episodes in the past couple of weeks and is eating less and less. Laura has always said she didn't want a peg fitted but at the meeting the doctor said Laura had agreed to a peg as the choking had really scared her.
While I am happy that she is getting the peg i am also worried that this means the beginning of the end for Laura,
Any advice, or experiences of the peg either good or bad would be most appreciated.
Thanks
Yvonne

I'm so sorry to hear that Laura is choking. This must be so frightening to her. this sounds like a very difficult time for all of you. I will kep you in my thoughts and prayers.
Paula

Yvonne

I am sorry to hear of what Laura and yourself are going through, I wish all the best.

My mother-in-law has PEG since 9 months. Decision was difficult and more than 1 year passed between neurologist's recommendation and intervention.

Before PEG, main issues were how to ensure appropriate food intake and how to do it in a reasonable way for both phd and caregivers.

Peg adopted is the "manual" one; means the caregiver (her daughters) uses a syringe to inject the food in the stomach. This solution is the best if the person tends to have uncontrolled movements. There are some PEGS whose engine pumps the food in during the sleep.. this would have never worked in our case.
Food is normal food, the same rest of family have; we just use a mixer to make it liquid. Initially, special food for PEGS was used, then doctor confirmed that normal food is ok, if paying attention it's liquid enough. The good thing of this is you avoid separate cooking and also give her the joy to "taste" something she was use to.. fish, vegetables, meat.. most of the times she tastes the food on the lips, then the operation starts.

There are 4 sessions per day, corresponding to breakfast, lunch, snack and dinner. Each taking around 15 minutes. Compared to 1 hr each before PEG, it's much better.

PEG maintenance consists of taking it clean (washing with normal water after each use). Need also to pay attention to the cut on the belly where is the small tube and keep it disinfected. Operation takes 10 mins a day (some patiens need it less frequently) and can be done by every caregiver, no rocket science.

pluses: right food intake (means phd feels better and sleeps better), more time for caregivers, more relaxed family environment, lot of less dresses and things to mantain clean..
minuses: she cannot taste food in same way was before..

I hope this helps

Orzoro

Dear Yvonne
First off let me say that I am truly sorry that you are faced with this dilema. Of course as Laura's Mother Your Priorities are understandably Different, You don't want to let go. But what are Laura's Wishes?. If she can not communicate, Then How does the Neurologist Know What she truly wants?. My own Family has been Greatly impacted by these issues. I will furthur elaborate on this thread if you so desire.But I must warn you,it was not a pleasant Scenario for any one.
My best To You on This Difficult Journey

Ron C.

I am so sorry to hear that you are having to face this with Laura.Both of you are in my thoughts and prayers. Maggie

Yvonne, I am sorry Laura is so badly off. We had a poor experience with a PEG with T's mother. T doesn't want one either. But who I would talk to is Myrna. She decided to PEG and Rik did do ok for a while. But even with a PEG the person deteriorates. While it required Myrna's permission for Rik to be fitted with the PEG, the doctors wouldn't remove it when it was obvious it was time to let Rik go. Myrna had said that had she known what she was doing and getting herself into with the PEG she would not have done it in the first place. I can't explain how bad Myrna was made to feel for pushing for the removal of the PEG. Bobby had awful recurring infections at the site of the PEG also if you will remember.. although I believe the decision to PEG came earlier than end stage and I understand why you PEG at that point. What I might say is this.. don't rush the decision. The doctors have a single agenda which is to extend life. That's their job and what they should do. Their attempt might be right or wrong about whether it extends Laura's life.. But it's your job to decide if extending it has any value for Laura. If you really don't see the point, don't be guilted into anything. I am sorry it's down to this. If a person with HD lives long enough this question is going to up. The doctors explain the "up" side with very few warnings which isn't fair. That's how Teresa's mother was PEGed in the first place too. And Teresa and Laura sound in similar positions to where the line is blurry whether they are late stage or end stage. I personally have decided that extending end stage of diseases as a rule isn't best. A doctor would have to really convince me why it would be a better option in a specific case to do so. It may be in a specific case.. I am not closed off to it. But I do want to know why going to extreme measures is better and what it solves for Teresa that is better than nature taking it's course. Because it will in the end anyway.

I guess I should disclose that this week we just went through this with my father. It was plain not to go to extraordinary measures to keep him alive. They didn't, but did have other measures that did the same thing. They never asked if this was best and would have continued these measures until we asked otherwise on dad's behalf. Once we presented the thought to the doctors only then did they begin to discuss that option. I think it should have been them presenting it as one from the beginning. They should not have made us wonder if we looked in some kind of hurry to lose dad. In the end it was handled very well, and we were not made to feel badly. I don't have any trauma story about the doctors.. just wish that all the options were discussed including non-treatment and it's possible benefit over continuing to treat him.

Yvonne and Eric.

My profound sympathies are with you both.

I think such decisions are devastating for everyone involved.

Still, I don't necessarilly believe in prolonging life for no foreseeable benefit for the patient.

Surely "quality of life" should figure into the decision....



jl

Hi Yvonne, I'm so sorry to hear where Laura & you are at. Its not easy.

Rikki had said in her younger years that she never wanted to be pegged but when she took ill in her later years & could no longer eat or drink, we panicked for her & asked her if she would have it done now. She said yes, but if I'm totally honest, 'yes' was Rikki's main word & she was usually agreeable to most things. I was aware that I was taking advantage of that but I honestly believed that she would improve once she had nutrition inside her plus I was terrified of losing her.

She didn't get better in anyway after having it fitted & it wasn't good for her for even a day. She only got worse & vomited after every feed & that only worsened as time went on, no matter what was tried by the professionals to help her.
She was already a skinny mite but she became emaciated in just a few short months. There were other problems too which hadn't been there before.
I can't tell you how much I regretted my decision for her. I asked the doctors to remove the peg, but thats not allowed here. They said If it fell out, it didn't have to be put back but that was a fairly slim chance.
Eventually after the 'pro's' saw how distraught I was for Rikki, I was told that feed could be withdrawn, as long as all involved in her care were satisfied that it was for the right reasons. That was a bit too drawn out to be kind but eventually they agreed that as the peg had been put in for a purpose it wasn't serving, then it was of no interest to keep feeding Rik & so feed was withdrawn.
It is the most heartbreaking thing I've ever had to live through & it still breaks my heart 20 months on.

I know this isn't how it is for everyone & if you decide to allow Laura to be pegged, I will pray that her experience will be nothing the same.

I was foggy about any benefit Rik got from the PEG. When you first showed up Rik had the PEG I believe already. I knew it was never a good experience from the time we first met you. Thanks for chiming in... you did the best ya could with what you had to work with. Hindsight always clears things up. And your hindsight has always been a big part of my foresight. Thanks for popping in at just the right time. I was hoping ya would.

No worries Eric. Rik did have the peg fitted already by the time of my first post on here. You remembered everything else right though.
If I was to have one wish, it would be that I had found this site & all the wonderful advice & help before we went ahead with it. I'm sure I'd have thought twice but as you say, hindsight is a wonderful thing.

G'day Yvonne, I'm so sorry to hear of Laura's deteriation. I went through almost identical circumstances about 2 1/2 years ago. In my case, I decided against prolonging Norma's suffering, it broke my heart to see her in that condition and it was the most difficult decision I've ever had to make. We had been married for 41 years. Right or wrong, I did what I thought was best at the time. I think quality of life, as it is, means something. Take it easy...peter.

Adding to my previous post. Over the years, Norma and myself had discussed this very issue, and she was adamant that she didn't want her life prolonged, but it didn't make my decision any easier when the time came.

I do sympathise with you Yvonne, and difficult as it is, you have to make the choice on what it is you feel at the time. Ask yourself the difficult questions and try to work out a sane answer. The trouble is that emotions always get in the way. Understandably so....take it easy...peter.

yvonne,
My husband was in late stage hd and told me no peg which I honored. He was bone thin and choking and I worried about starvation. He ate small amounts of pureed food and got pleasure from it until one week before he died. He locked his mouth shut and refused liquids and food as his way of saying his body was shutting down. The end is hard whether peg or no peg but there was a natural shut down at the end when there is little quality of life left. I would not want to prolong this end of stage condition no matter how hard it is to say goodbye to a loved one. I never wanted to say goodbye to him until the last hours when he needed oxygen for breathing which became labored. Doctors kept wanting him to be pegged but that was not his wish and I don't regret his decision in hindsight. We had hospice and made him as comfortable as possible.We did not give his body any additional trauma from a medical procedure. His mother had a peg with parkinsons and died two days later from infection. I can only speak from my two family experiences.

After watching my mother lay in bed for many years, not conscience of her surroundings being kept alive through the use of the peg, I would not want anyone to go through it again. I'm planning on signing a living will stating NO peg for myself. My sister has not signed a living will, so when I arrive in Massachusetts I intend to discuss this very subject with her. I'm just hoping the living will covers pegs. This is just my feelings on this...from 1 previous experience.

I'm so sorry you are going through all this right now or any time for that matter. Just went through it with my brother and he said a long time ago do not take any great measures to prolong his life if it had no quality. I also did not want to prolong his suffering and neither did his children. Best to you and your family. You will be my prayers and thoughts, and for comfort for your daughter.
I do believe it is a hard dissicion either way.

hiya
yvonneg, im sure you will make the right choice with the information you have/had at the time. I think the forum is good here, cause sometimes the medical profession can show you the instant solution, but the longer term implications are not always "in the best interest".
But i think that people have given a good overview of both the positives and the potential negatives of a peg.
I think, if its in already, then its in.
If not, then perhaps discussing with the Drs some of the issues that have been raised here and looking at making your daughter comfortable is also an option. Either way, im sure you will make the right decision.
I dont think there is a right or wrong. Just a "right at the time" or "right for us".
We were looking at advanced directives/living wills. In england, they are not always legally binding and can be overruled by medical professionals in certain circumstances.
Many people are not aware that you have to keep them "uptodate" and keep people informed of your continued wishes: as the directive, despite being written, is not caste in stone and Drs will, in cases such as Lauras or Rikkis "talk" to people at vulnerable times and present what had previously been seen as a "no way" option as the "only" option.
This is not always the case: however, as im sure it was discussed: if food refusal starts to become an issue, then obviously there may be a predicatable decline.
A peg, in the short to medium term, will indeed tackle this problem in terms of your daughter receiving nutrients. Invariably, in many cases, it will consequently prolongue life.
i read and reread about rikki when my hubs was diagnosed this year and i couldnt get her out of my mind. i also read her mums story on another site on her anniversary: its heartbreaking. I think that what is so upsetting, is that mum was placed in the position, when vulnerable of having to make an impossible choice, which she did: then later had to make another one. It seems her daughter had reached the end of the line and became tired.
I really dont want to speak out of turn here. It must have been hard for you to hear last october that they thought your daughter perhaps had 6 months left.
its clear to hear how proud you are of your girl, for her strength and ability to fight against the odds. But it maybe that the disease is indeed taking its course. That the peg may, in your mind represent that step towards the end.
But, perhaps, what it is, is just about a choice: a terrible, difficult choice that has to be made when this time comes. It seems that perhaps thats whats happening and that indeed the peg may make things more comfortable.
Or, (as in the case of others), it may prolonge the inevitable. I suppose it depends on the extent of suffering.
My father-in-law, when in late stages of HD refused food and the idea of a peg was never raised by the nursing home. I think as he was unable to communicate, was incontinent and had very poor quality of life.
The emphasis was on "keeping him comfortable" and avoiding dehydration as far as possible.
I have experience of peg feeding a young paraplegic patient, over some years. She complained the feed had a bad taste. It was a "manual feed" and came supplied via hospital. It was very easy to run. No particular problems with it. This lady had been fed this way for many years due to a medical accident and therefore there was no choice in the feeding arrangement. It was set up in the hosptial.
This must be a very scary time for you.
My husband makes the sweeping statement that he "would never want anything like that" yet, i also know that facing a room full of drs, following some episodes of choking, it may be hard to advocate that this is not what he wanted. Especially if i was then presented with my love one having said how scarred they were by choking.
Ask the Drs: if the option of peg feeding isnt pursued... how will you keep her comfortable and minimise the risk to her choking? How will this be managed?
Both sides should be presented to you.
Yvonne: i do not write this post lightly: i have a son, he has some things going on. He is only 8. We started down a road i dont want to travel. My thoughts are with you from a mums level. x x x
ps: for those in england requiring copies of "advance statements": you can get these via your local mental health team most often: they are very "topical" at present.
I have about 15 copies in my office and they cover both mental and physical health and include things like: "in the event of my incapacity - where the cat goes, who pays the bills blah blah."
However, with the introduction of the mental capactiy act i think in 2005 this is also made more complicated, so people really need to be looking at making advanced decisions whilst they are still deemed to have capacity to do so.
Yvonnes situation highlights how, nearest relatives will though, be placed into a position of decision making if there is a change in "decision" (often led by drs) or at least highly influenced by drs who are not always presenting patients with the entire spectrum of choice.
Yvonne, i send you my very best thoughts and wishes: your situation is my greatest fear. x x x

It is a hard and tough one either way. Im sorry that you have to even think about this.

If Laura was always against having the peg then I would stick to that as hard as it is, Im so sorry you are going through this. I wish you all the best

Louise x

Thank you to every one who has posted a reply,

Paula, JL, Maggie & Lou - it means a lot to be able to get thoughts and wishes from people who actually know what we as a family are going through.

I am against Laura getting a peg but because she has expressed her desire to have one put in, i don't seem to have a say in the matter. I want Laura to have quality of life and not quantity and Laura has been so quick to pick up infections recently that i feel that getting the peg is opening her up to more sources of infection.

Eric - I am so sorry to hear about your dad, thank you for still taking the time to reply to my post. Can i ask you What would your dr's do if T said she would want a peg but you said you didn't want one for her.
Orzoro - thank you for the information on the peg, it really helped me to understand more about it.
Ron C - i would be grateful (if its not to distressing for you) if you would tell me your experience as i am trying to find out as much as i can, maybe you could pm me with the info as i wouldn't want to distress any HD+ people who might be reading this post.
Myrna - I remember you saying about Rikki's bad experience with the peg and that helped me to challenge the Dr's at the meeting, They said that Laura would still be able to have something to eat if she wanted to but I don't know if that is true, I also am scared that Like Rikki, Laura's life would be prolonged to the point that she would have no quality of life and i would have to fight to get the peg taken out.
Peter - what is worrying is that because Laura can still talk although only for short periods she has agreed to the peg and i don't seem to have a say in the matter.
Dove - Thank you for sharing your experience with me, saying goodbye to a loved one is very hard but letting them go peacefully is always the best way.
TeacherSue - i agree, i do not want to see Laura lying in a bed for months with no quality of life.
Beachbum - i am sorry to hear about your brother,you and his children made the right decision
Trying to cope - Thank you for a very thought provoking post,(in a good way) you have lots of good points in it, i will be taking a lot of your questions and points that other people have brought up and will become a pain in the butt for Laura's dr's on this issue. I am sorry to hear about your son having issues and you and your family will be in my prayers.

Thank you again

Yvonne

good luck yvonne!
her care team should be ensuring your daughter has capacity to make an informed choice, not just presenting her with a solution to the problem around chocking. If she does not have the capacity to make an informed decision (ie if she is unable to understand the choices and implications/consequences, is unable to retain the information and weigh up the pros and cons and clearly communicate her decision: it may be, that you actually make the decision for her.
I think it would be useful establishing exactly what the situation is here: are they treating her as an adult with capacity to make her own decisions, or approaching you as her enduring power of attorney re health care decision?
If it is the latter, you do have the choice: if its the former, then you dont - but they have to show that your daughter has capacity to make the decision. You can request a formal assessment of her capacity.
Our thoughts are with you at this very difficult time. x

Oh gosh Yvonne, i do hope that you are given the choice to decide for Laura. This must be hard and frustrating. So sorry Laura's at this point now, love and hugs