Had a very emotional few days,my dad is now peg fed,and can take nothing through his mouth,keeping his oral hygiene and making sure his.

[Robin20]

Mouth is kept moist,watching him choking on phlem,thank god for the suction machine we got last week,doctor came today and I've asked for patches to reduce the phlem.oxygen will arrive in the next few days,we have refused to let him go into hospital.they can't do what we do at home,24 hour care one to one is very much needed,nobody knows anything about psp,and nobody knows what they need but us x

[shasha]

you are so right robin 20 - good for you, taking such great care of your dear dad... tell me, did he want a peg fitting?

[JudyJ]

I both admire and feel much empathy for caregivers like you, Robin. It must take so much strength, perseverance, patience and so much more. You are a saint, truly. Your Dad is blessed to have you there for him. Yet I can't imagine how emotionally raw you must feel at times as he struggles with this disease. It has to be awful to watch at times and perhaps leave you feeling powerless.

I'll keep you and your Dad in my thoughts and prayers and please take the time to care for yourself.

Judy,

Minnesota, USA

[Robin20]

Thankyou for your kind words.when it was mentioned months and months ago,he said no,but when he realised weeks he couldn't swallow at all,he said yes,it's strange because even though he can't do anything at all now,and I can lift him like he's a child,he knows and remembers everything,and that's what makes it so awful.he looked at me last night after choking,and got the word out WHY,it was heartbreaking,x

[carolinesimmons in reply to Robin20]

My husband is in much the same boat, but he got his JPEG in the beginning when he couldn't swallow. He is maintaining his weight on tube feedings by pump. He still weighs 180. But like your husband, he knows and remembers everything. I told him today that I was sorry we had so much arguing during our marriage because we wasted so much time when we could have been loving each other more. He agreed.

[Hidden]

You are doing a stirling job looking after him. Keep an eye out for contracture of limbs and make sure you get help from the palliative care team. If you are not in touch with them ask your parkinson's nurse or ring the hospice near you. They will be able to tell you what is the best way to keep him comfortable and will know how to support you too . you are in my thoughts. Best wishes Dianne x

[jillannf6]

hi robin

i ,am os sorry that your dad is in pain and struggling with the peg

i do hope you get some relief for him soon - the hospice will eb good a tpalliative care for him

lol JILL

ANd a hug xxx

[suziewong]

My heart goes out to you Robin. My husband is in hospital for rehab following a fractured right leg. He fell out of bed twice following surgery. He was sent home after mobilising only once. I struggled for 4 days but eventually said I could not cope. Our Community hospital had no beds so he was sent to a hospital further away. He has fallen there twice and banged his head and cut his arm. Chest is also painful. His eating & drinking have gone downhill badly. He is still choking on thickened fluids, eats a small amount of pureed foods and struggles to take his meds. The Consultant mentioned a PEG in January but we thought it was a log way off as he was still eating solid food then, finely chopped.

He too has problems with saliva / phlegm. The hospital staff although friendly, as you say know little or nothing about PSP. A few did take the time to look through his file and about me pages, but the healthcarers who do most of the work with him know nothing. They were giving him plain water in the Dining Room, a large spoon to eat with (He can only open his mouth a few millimetres and eats off the end of a teaspoon with assistance. They get fed up with him needing constant trips to the bathroom. Although difficult as I am his sole carer and get no sleep at night as he is most restless then, I feel I understand his needs more than most. xxx

[stitchandknit in reply to suziewong]

Hi Suzie. When my mother in law was in hospital I took with me a print out from the internet getting them know what they were dealing with. I also found the pap association a great help. X

[nomansland]

Robin,I,m glad you got the machine,it is likely the biggest help in this terrible illness,you will get used to suctioning as you go,sometimes you have to go deep...just at the gag point,regards,I like you will not see Madeline where there cannot be the support this awful illness requires,rergards,Rollie

[nomansland]

Robin,I forget,you are going to see that tube feeding far surpasses the efforts of eating and taking meds,the only thing is the mental acceptance,Madeline has been on tube feeding for 2 plus years,Robin I brush Madeline,s teeth with very little tooth paste and water then suction right away,if you,re lucky enough your dad can open his mouth you will see a daily accumulation of a ...let,s call it a rubbery coating from dried up flem..I use a plastic toothpick and a long narrow ttwizzer to remove the crap,...Rollie

[Robin20]

What a good idea about the toothpick and tweezers,your right about the rubbery coating.i struggled this morning with it,bought a torch as well this morning so I can see what I'm doing,and I do brush his teeth like you do,I've also seen someone talking about patches that you put behind the ear to reduce the phlegm,they were saying that they were amazing and helped a lot,so I'm waiting for prescription and will try them out.

[Robin20]

Suziewong.do try and do what I do,keep him at home,carers in a morning to was and dress,carers at night to put him in bed,it's a short break,but nice,we don't have nobody come in the day because when it's a nice day,we take him out in his wheelchair,along with the peg etc.and just before he goes to bed he has a sleeping tablet,and sleeps very peacefully all night long,never will I let my dad go into hospital again,far to distressing.the last day he was in hospital,I walked in the ward to find my dad lay there,the bed a mess,showing all his genitals,I could have cried,and the staff just didn't care,and your right about them not knowing what he can and can't eat drink,

[Charliesyoungest]

Robin, your father is much further along in his PSP disease than my Dad. I feel for your father and pray God will continue to bless you with the strength you need to continue helping your Dad. You are totally a wonderful person for all you do. I read so much on here and in spite of how terrible PSP is I realize how much I still have to be thankful for w/my Dad. He falls frequently, even with his walker, randomly chokes, is becoming more and more incontinent, speech is few words and often only stares into space, yet I am thankful for what he still is capable of doing and acknowledging. I know that maybe sounds strange, but I fear the end stages so much for him. It sounds like you have every step covered in caring for your Dad and when those steps you are unsure of arise you find a way to comfort him. God is smiling on you and he is with you and your Dad every step of the way. I don't mean to sound selfish w/anything I've said. I truly value all the postings here and so glad I have joined! I will pray for you and your family.

[Robin20]

Charliesyoungest,thankyou,just take one step at a time,it was only 12 months since my dad was at your dad's stage,that's why it's progressive,like you I value the postings,no matter how sad,it's helped me prepare in my mind.it was only 3 months ago we enjoyed a glass of wine together thickened but enjoyed.now there's nothing,keep us informed on your dad,I will be thinking about you.

[Charliesyoungest in reply to Robin20]

Robin, 12 months seems like such a short time ago. I am so scared of the changes to come. I think my biggest fear is my dad being totally aware of all the changes and being able to do nothing about it! I almost think I could handle it better if his mind deteriorated as the disease progressed. Wow, was that a selfish statement or what? I've mentioned to other family members how rapid this disease is and the "overnight changes" so to speak that can occur...I've recently been told I'm acting a bit premature on some of my preparations...maybe I'm looking too far ahead as I try and prepare for what is to come? I know there is no set plan, I just want him to be as comfortable and pain free as I can make it ! I am currently reading the book "killing mother" by Rita Clagett. It is about a daughter caring for her mother thru this nasty disease, I am finding it enlightening just as I do this forum. There are many stages left for my dad and I've just recently joined this forum but already I am thankful for you all and everything I've read. It's so comforting to know we are not alone ! God bless!

By the way, I smile at your remark about the glass of wine you shared with your dad just three months ago, I watched my dad eat birthday cake last week for my sons 32nd birthday, I fought the tears wondering would he even be here next year at this time and if so what state will he be in?

Hang in there Robin and thank you for your response...

[stitchandknit]

Hi robin20 when my mother in law was still with us I managed to get some swabs, I got them from Amazon and they were lemon flavoured. They helped to keep here mouth refreshed. X

[Robin20]

Charliesyoungest.treasure every moment you have with your dad,and if you need to know anything I'm an expert,I'm proud of everything I got my dad through.like you I read everything inpossibly could to make life easier,stitchandknit,thankyou I will look for the swabs.

[cinkerfoot]

Hello all. This is my first real post. My 81 year old mom was diagnosed with PSP about a month ago. She is still living by herself, but I see her daily. Her first real symptom was vision issues. Went to 5 different eye doctors and none of them had a clue. She is still very ambulatory...walks her dog at least a mile each day. No falls yet (knock on wood). She can still maintain her household and does her own cooking, but her speech has deteriorated over the past 5 months and her swallowing is now a problem. She also has the phlegm problem and I jokingly ask her if she wants me to use the vacuum cleaner on her. I am interested in the suction machine...it seems like it would make you gag. She is adamant that she doesn't want a feeding tube. Can I get some feedback from those who also denied a feeding tube? Also some info on the suction machines?

[easterncedar in reply to cinkerfoot]

Dear Cinkerfoot, welcome to the community. There is lots of experience here with similar issues. You might want to start a new post with your questions, just to make sure they are seen. My sweetheart didn't want the PEG, but he so enjoyed eating, and in the end that was almost the only thing. I sometimes regret not insisting, but only because I would have chosen to keep him no matter what, and that would have been selfish of me.

The suction machine was great, although atropine and, later, glycopyrrolate were the saving factors. LSVT Loud is a good program of exercises to help with both choking and communicating. We were lucky with the local speech therapists and I recommend looking for that kind of help as soon as you can. The sooner the exercises begin, the better chance of them becoming ingrained.

Best wishes to you and your family. Peace, Easterncedar