I finally gave in to the doctor's request to allow hospice to provide assistance. Today, a hospice nurse, a hospice social worker, and a hospice Chaplin all came to the house. They also arranged to replace the equipment that our insurance has been providing, such as the feeding tube machine. They also had a patient lift delivered, although it looks pretty complicated to use. Kim has gone down hill so fast this past week, to the point that I can barely move her. She is totally out of it and provides no assistance and is complete dead weight. Fortunately she only weighs about 120 pounds now and I've been exercising daily for the past year, knowing it would come to this. I used to have zero arm muscle, but now I look more like Popeye (well, I may be exaggerating on that one - haha).
I'm sure this was the right thing to do, as I've been panicking frequently. Even though Kim currently does not have an active UTI (and we've have had plenty of those), nor anything going on in her lungs, all of her vitals keep going up and down. Temp will be normal and then an hour later it will be 103.5. Heart rate over 100 and then in the 60's. Fortunately her oxygen levels have not dipped below 92. And her blood pressure has only been slightly elevated. We saw her neurologist last week and she told us this was a sign that her brain can no longer regulate her body functions and is starting to shut down. That really hit me hard, so I've been preparing family and friends for what's to come. My daughter and I have gone dress shopping so we can bury Kim in that perfect dress. Unfortunately that's been a real challenge. Seems like all the stores only carry party dress with lots of glitter, are low cut and sleeveless. Not at all appropriate to be buried in (or at least that's my opinion). And most of the dresses in Kim's wardrobe are not appropriate either, as they were ones she would wear on our many cruises. We took 18 cruises over the past 20 years. How I will miss going on cruises with her. We have taken 5 since her diagnosis in 2010, which included a 2-week Hawaii cruise and a 2-week Panama Canal cruise.
We fought the good fight and unfortunately it looks like PSP is going to win this one. We only recently attempted to qualify for the C2N clinical trial in Dallas, TX, but once we arrived, they determined she was too far in to the disease to qualify. Kim and I both wanted to help find a cure to this horrific disease. Partly because we would never want our children or grandchildren to face this disease (they're still not 100% sure it's not hereditary), but also because we have become so close with others dealing with this disease through the support group that we lead. And I have gained an even more passion after hooking up with you wonderful people from all over the world. How it breaks my heart to read some of your posts each day. Many of you have taught me things and I'm only hoping that some of my posts and replies have been of help to you as well. I've also been on the Program and Education Committee for CurePSP.org for the past couple of years. Even after my beloved passes, I plan to continue the fight and serve however I can. My faith in Jesus Christ is what is getting me through these days. I'm constantly reminding myself: I can do all things through Christ who strengthens me.
Love and Hugs to each of you, and wishing you peace and joy during this holiday season.
Ketchupman
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ketchupman
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What a beautifully written message, ketchup man. I am so sorry it has come to this, but am glad to know you and Kim are getting help. Your posts and replies have always been of special help to me; do know that. My heart breaks for you.
Oh Ketchupman, you are in my thoughts and prayers. It's so hard seeing the deterioration when it suddenly speeds up isn't it. You described my darling two weeks ago and we thought it was the end but he suddenly "woke up" after 20 hours of being totally unresponsive and he doesn't have a PEG so was receiving no fluid. I've put it down to God preparing me for the future.
I'm so pleased you managed to go on so many cruises and make all those wonderful memories. It had been our life long dream to go on a cruise to the Norwegian Fjords when we retired. We booked it a few days after diagnosis and it was a holiday I will never forget. We only managed the one though.
I admire your determination to continue the fight to help find a cure for this awful illness. I hope I will have the strength to do the same but I know if our Lord wants me to continue when PSP is out of my life, He will give me that strength as well.
I pray that you and Kim will know His special peace during this difficult time.
So hard to know what's right but it sounds to me you do. As the end is getting nearer and however hard it is going to be to say goodbye, I think PSP (and any other long term illness) gives an opportunity to gradually say goodbye to every aspect of your loved one that's slowly disappearing...
I'm glad to hear you're also working for the cause - there's nothing here but once I'm back in the States (next Spring) I would also like to be more involved. I'm not on here that often anymore and I don't read everything, but your post was sad but very couragous and inspiring.
Sending you and Kim warm wishes from a dreary Belgium - a Peaceful Christmas to all.
Oh Ketchupman, this is such a touching post , conveying all the mixed emotions that we all going through. I'm guessing that you feel very sad that Kim is fading but grateful that she will no longer have to suffer this terrible disease. I am finding Ben slowly deteriorating before my very eyes, like life in slow motion. I find that very difficult to deal with, having to be one step of the game ready for the next stage.
My heart goes out to you and your family, I wish you love and courage at this difficult time.
Feeling so sad for you both but glad you have your faith to sustain you. Thinking of you and also your family who also will need the Lords help at this difficult time xx
Hi Ketchupman, Sorry it has come on so quick for your family, i hope that Kim is not in too much pain and that the hospice are able to help.
Your message has brought home to me that I need to start the final stage planning something I always shy away from trying to maintain day to day routine. Keep your faith strong in the final trial it will provide a anchor and solace.
We were'nt into cruising (20 yr at sea as a Naval hydrographer put me off ships ( not the sea), but we did over 20 tours China, Costa Rica, Peru, Madagascar etc. Lots of memories for both of us and plenty of photos to bring back the good times.
I hope a medical trial will be successful in finding either a cure or preventative drug, but I do not hold my breath, as the studies do not seem to be coordinated, far too much of a scatter gun of limited small scale studies or as in the UK the only one major study seems to be an early signs study and M's PSP is, like Kim, considered too advanced.
i'm sorry, Km. At least you have the strength and wisdom to do the best thing for your wife. Comfort and safety are our main goals for our loved ones and you have given her that. It sounds like you had a lovely life together 'cruising through life' you might even say. I have and will be saying a prayer these coming days, and if it is to be that she leaves this world soon, count it all joy when Christ receives her for heaven.
AVB
Peace I leave with you, my peace I give unto you; not as the world giveth; give I unto you. Let not your heart be troubled. neither let it be afraid.
John14:27
But the God of all grace, who called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, establish, strengthen, settled you.
Psp is such a horrible disease. My mother in law is currently fighting it, I met her when she was somewhat newly diagnosed so I haven't really known her any other way, but I have heard stories and she was simply an amazing woman.
I read in your post about a study you were hoping to get your wife into. My father in law and mother in law(before she got too far sick) decided to donate her brain to a local university so they can hopefully use it to see what causes PSP or even if it can be passed down. That may be an option to help with some research.
That's wonderful. CurePSP also encourages individuals with PSP to donate their brain. In the US, they are sent to The Mayo Clinic in Jacksonville, FL. Should there be an expense for the family, CurePSP has some funds to help cover some/all of the expenses. It helps with research and they will also give you confirmation that your loved one truly had PSP.
I am so sorry you are at this stage but it is good that you have your faith. May you feel God's presence, and that he will give you and your family the strength to cope with what lies ahead. Lots of love, Nanny x
Fair, but continuing to have some scary episodes. Yesterday morning, she began sweating profusely. I checked her heart rate and it was 138. So I stripped her of her clothing and applied cold, wet wash cloths on her. Her heart rate quickly went back down in the 60's.
She's still not talking, although sometimes she attempts to whisper something. I did put some Coke on one of those mouth sponges to let her have a taste and she smiled. I asked her if it was good and she clearly said "Yeah". Melted my heart to hear her say something.
Thanks for asking about her. Hope you guys are doing well.
Thank God Kim has you Dan, to help her in a moments notice....You see? I just read a post who could not say "happy" new year. I understand their feeling....But the feeling that keeps us sane and holding on to some joy is the essence of being happily overcome by something like a whisper of appreciation from your mate! B still has his fun moments...inside jokes and observations....He still has a better memory than me...always has...And, quite frankly, his provisions are much more palatable than mine!!!!!hahah...a little Levity with the Jevitiy ,anyone?
So keep up the joy let us find strength and power over that which ails us,
AVB
So how'd you come up with Ketchupman...favorite condiment?
My heart goes out to you both Ketchupman, you offered some great advice & support to me just 4 weeks ago, as you have every everyone.
Just from reading your posts I feel like your going to be everyones rock,your going to be strong for everyone but take time for yourself too, as I found no matter how much you've prepared yourself, when the time comes it feels like a bolt out of the blue.
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