Sad Day Today

[judy1962]

Visit with neurologist today. Dave has two neurologists and one says he should have hospice, the other neurologist did not disagree. I was also told that we need to place the PEG now or it will be too late and he may not make it. We are both so young. Our daughter is so young. I am so sad. Our pet rabbit, 10 years old died yesterday. I buried him. I cried and I think I was crying more for my loss of our lives and for my husband. Why is this happening?

[Pinda]

I lost 2 pets in the last 6 months, I know what you mean. I cried and felt such a loss,both for the animals but also you grieve for the loss of my husband as he was and the loss of the future you thought you would have. It is all so dreadfully sad ,there are no words for it.

[jillannf6]

hi judy1962

yes there is no rhyme or reason why this disease should striike one person rather than another

(i personally would not want the Peg feed and shall state so in my power of attorney documentation)

i am 65 and

i have psp(diagnosed dec 2010) but am upbeat as i want to live out my last years as best i can and do what i can whilst i can

and it explains a lot of my health problems as well

pre diagnosis, i felt i had 2 get to over 90 years of age (my dad and his uncle have done that)and now it will not happen and it is a bit of a relief !- i am not in denial of what will happen in the later stages of psp but - hey- somehting is going to get us all

love jill

the worst aspect is the dimininishig ability to communicate- speech handwritign dyslexic typing etc

[kay1]

There are no words to help with you sadness, but believe me, your pain is shared by all of us with loved ones experiencing the cursed PSP. Our thoughts and love are with you and Dave x

[Louise-Alabaster]

Judy I am so sorry. Nothing any of us say can make it any better. It is so unfair. I think about my dad working all his life for a fun retirement - he was soooo looking forward to seeing the world with my mum and he was diagnosed at 57, died at 62 - thats so young. I am finding anger one of the hardest things to deal with - why him?? Why Dave? Every time I log onto this website I read another story thats just so sad but it does make you realise you are not alone. Give him a cuddle every day and tell him you love him - at least PSP cant take that away from us lots of love xx

[Louise-Alabaster]

Just wanted to add - when dad had a PEG fitted they told us there would be long term side effects - apparently our bodies are not designed to take the feed and at some point it would probably lead to colon/bowel cancer because of complications. If I had our time again I'm not sure I would want it fitted for him again. I'd just say make sure you get all the facts before you go ahead with it. Give Dave a hug from me xx

[PSPA_KatH]

The decision to have a PEG is a very personal one and individual to each situation. Some people cope better than others and some know immediatly it is not something they would want but each persons decision should be respected as being the right one for them. The best way forward is probably as Louise -Alabaster suggested- to get all the facts and as much information so you can and then you and your husband can make the decision from an informed perspective. The PSP Association have leaflets which they can send out and you can always contact your PSP Nurse Specialist who will give you as much information as she can and answer any questions you may have about the procedure.

[SuzieQ]

Love and hugs to you both. All the positive comments above are reiterated by me. Enjoy all you can together while you can. (Easier said than done some days, I know!!).

I am struggling today.......just one of those days. Seeing my hubby struggling to do simple things is heartbreaking. I frequently have to remind myself how much worse it must be for him.

Take care and whatever your decision regarding a PEG it is what you truly feel is in the best intrests of your hubby.

Take care............SuzieQ xx

[Julie-Alabaster]

Hello,

It is such a sad an awful illness. My heart goes out to all of you as I know how terrible it is and how sad it is. That's what we always said why dad? But with everything in life it has to be someone.

From what my sister wrote I do kind of agree but also what is the alternative?

You have to be 'well enough' to have it fitted or the procedure will make you worse for a fair amount of time. As in easy a month.The doctor recommended it to dad when he was still able to eat. I really dont know what is best, we had one 'good year' with dad with a peg and one absolutly terrible year. Selfishly I wanted him to have it so we had him for longer - looking back on it and the amount of suffereing my dad went through I would maybe have chosen the alternative. I dont know though as that's easy for me to say now. How do you watch someone starve?

But every situation is different and the progression varies from patient to patient. It is a decision that needs to be made with all of the facts that come with a PEG tube and then think of what the alternative will be like too. Both equally as awfully hard to decide.

I hope you come to a decission that you are both 'happy' with and I say that loosley as none of this is happy. I now think about it differently to when my dad was here and I think of it now as what if that was me what would I want, and it would be neither of the above......

My best wishes are with you all x

[Hidden]

Hi Judy

You are left with two very difficult decisions to make, about the Hospice and the PEG.

I don't think anyone can make them for you, only you and your husband know how you feel about both issues. My husband preferred to battle on without the PEG and he remained at home with me till the end. However we are all different so it's not easy to advise. Two years after he died my youngest sister died of Cancer after having fought a brave battle for 5 years. It is certainly very difficult to accept these things especially when the people involved are so young. We can only help to make their lives more bearable for them during their terrible illness.

Kind wishes

Lina

[judy1962]

Thank you all so much for your love and support. Somehow your caring makes this seem easier and your advice is so very helpful. I thought I had made up my mind about this PEG until we saw the neruro yesterday and my feelings went haywire again. I have done research on the PEG and there is no evidence to suggest that it will prolong David's life and I have also read that it can increase the incidence of aspiration. When I hear your advice it gives me comfort once again with my decision not to PEG. I have also read some very good medical articles that do not promote the PEG for these patients. Both of our PSP nurses have given me very good advice regarding the PEG and they are not in favor of it. They see much more of what goes on with these patients than the Neurologist sees so I tend to put my trust in them more than the doctors that may be neuros but have not dealt with the disease, in fact my husband is his the neuro's first PSP patient. The PSP nurses from Philadelphia, PA, deal with PSP on a daily basis and have seen it all and have warned me of all the things to come and I am seeing it all happen. You wonderful caregivers are also very much like our PSP nurses, you see the things happening on a daily basis and you know what to do and how to respond to it. I am so very thankful for your support. I will not be fitting the PEG. Dave did not want it two years ago when we filled out the paperwork for his living will. Please pray that I will have the strength to follow through and that I will feel no guilt for doing what I believe is best for my beautiful, lovely husband. Please also pray that God will allow David to be with us longer without the PEG. I really need a miracle right now.

Love to you all,

Judy

[SuzieQ in reply to judy1962]

Judy,

How brave you are to make such an incredibly difficult decision. Massive admiration is sent to you and your husband and I pray that you will now be able to move on and enjoy many precious times together. You have already proved you have strength enough for both of you and God will guide you through the difficult times to come.

God Bless and take care. Love to you and Dave and all your family and friends.

SuzieQ xxx

[Kathy in reply to judy1962]

Love and hugs xxxxxxxxxx

[maryelezibeth in reply to judy1962]

Hi Judy My heart goes out to you it is so hard to do what is best for everyone my husband is in the late stages of C B D and when he could still deside for himself he did not want anything that would prolong his life as he knew what. it was going to be and i will try to keep that promise to him .M

[judy1962 in reply to maryelezibeth]

Hi Maryelezibeth, thank you and I am sorry to hear that your husband is in the late stages of CBD. It is so difficult to make the decisions even after the living wills are made out in advance. This disease has taken over so quickly and I now can realize that I may lose him and I am afraid. He keeps telling me that he does not want to leave our daughter or me. This breaks my heart. She is only 19. I still cant believe that this is happening. Did your doctor tell you that your husband was in the late stages? I am sorry to ask you this, but we have two neurologists one in our home town and one in Philadelphia, PA, USA. The one in Philadelphia says that Dave is in end stage and I am not sure that the one in our home town even knows too much about the disease as he never even thought that Dave had PSP. He only recognized it after we came back from Philadelphia, (5 hours away), and I told him what the experts had said. He then said oh yes I can see it now. I truly never know what to think. The neuro in our home town is the one who wants to have the PEG placed. The neuro (expert) is against the PEG as they have seen no benefit. I always said that I would not put Dave on a respirator, but now I wonder if I can follow his wish in his living will as I find it too difficult to lose him so quickly.

Judy

[maryelezibeth in reply to judy1962]

Hi Judy My husband is under an amasing team of doctors we have been so lucky if you can call it that ,my husband has no quality of life now if an infection does not get him he will lose his swallow and maybe his eye slght if his eyes go that is all he has left this is such a cruel illness you have to do what you think is best take care .M

[judy1962]

Thank you SuzieQ and thank you for reminding me of our dear Lord's love and guidance. May He continue to help you and your hubby as well. God bless you both.

Love,

Judy

[judy1962]

I gave up trying to feed Dave today. He coughs continously through the whole day. I am not exageratting he truly does. He moans and coughs 24/7. He keeps coughing and spitting everything out. I am angry that he wont try harder. I know that doesnt make any sense, but when he is listening to the doctor speak or his brother on the phone he does not choke or cough so to me it seems as though he has some control over this coughing- choking thing that he continues. How can I feed him if he coughs it out? How long will he live without food? He is eating pureed foods now. I hate this.

[MarilynMorgenstern]

I have not been leaving comments as I would be repeating most of the things I have been reading. I feel that I may have something to add to help your dilema.

My husband of 50 years is going through many of the same choking but really not as frequent. He uses The Vest ( the vest.com) and the nebulizer twice daily. He just started taking Mucinex twice daily to break up the moucus and his caregiver and myself feel this regime is helping.

We too decided not to use the PEG as meal time is still socialization for him. We try to eat home usually and have wonderful friends that join us with meals they will cook or I will cook or we order in.

Though we know things will not get better we pray that we can stay status quo for awhile.

Good luck to you and keep your strength.

Marilyn

[jillannf6]

hi Judy

i really think u have made the right decision not to PEG ..but the coughing must be awful and impossible to bear for u and Dave

plz do not giveup (he would nto want you to) for his sake

meal times are so important as a socialising thing and to be fed permanently with a tube is nto something i woudl want personally

love jill

[judy1962 in reply to jillannf6]

Thank you Jill, I wont give up and today is a new day, and I will successfully feed Dave. Thanks for helping me with the PEG decision. Marilyn, I had read about mucinex before and I gave it to him last night after reading your message. I am also looking into the vest. Thanks for all your comments and advice!

[cathy]

hi i'm new to this site.my mum was diagnosed with PSP in 2007. her condition has deteriorated since last Christmas and has been in and out of hospital. she has been told that she should have a PEG but has decided to decline. this is a very difficult decision as she now increases the risk of choking and pneumonia. we have been told three times now that her condition is critical as she goes into very deep sleeps her pulse rate and heart rate go seriously low, this has lasted about 24 hrs and then she seems to make a recovery. it is totally baffling the hospital and i have been trying to see if anyone else has experienced this. she now has another chest infection and her consultant has suggested that we just make sure she is comfortable and out of pain. its so very hard as we as a family have prepared for the worst. sorry as this is a difficult question to ask but has anyone else experienced this and can give any idea of how long we are looking at ? thank you for reading this . Cathy

[judy1962]

Cathy,

I am sorry to hear about your mum. My husband''s pulse rate goes very low sometimes, but he also has sleep apnea and when he stops breathing, his heart can acutally stop for a moment. It makes me very nervous so I find myself constantly listening for his breathing. He has a CPAP machine but he rips it off moments after it is put on so I have stopped trying to put it on him. Your mom's condition sounds critical. Without treatment for the infection your mum could pass on within a few days or she could rally and her body might fight the infection. Give her lots of hugs and tell her that you love her and tell her that it is okay to go on to be with God and that you will see her again. I will pray for you and your family. May God be with you and take care.

Love,

Judy

[hmfsli]

Judy,

I pray that you and Dave will know God's loving presence with you.

hmfsli

[judy1962 in reply to hmfsli]

Thank you hmfsli, and how timely your message is. Dave has recovered from the UTI that he had contracted and his swallow is back. Still choking but getting food down and keeping it down without choking it out. I was told that a UTI could make the PSP patient much worse, but I was not prepared for what happened to him. There were times during the night that I was so frightened that I almost took him to the ER, but so afraid that if he was admitted he might contract a nosocomial infection, namely pneumonia and that he would be in worse shape. I have spent the past three nights on my knees next to his bed. I have noticed a marked difference since the antibiotic kicked in and he is alert and speaking two to three word sentences again and laughing. The Lord has given him back to me and I am so very thankful. God has also been working in my daughter's life and today she recommitted her life to Christ. I believe that God used for good what evil had planned for harm. Thank you for your prayers and God may bless you.

Love,

Judy

[hmfsli in reply to judy1962]

Judy,

So pleased to hear the news about Dave's improvement and your daughter's decision. Joy in the midst of sorrow.

hmfsli