Not sure but think this may be the start of the end :-(

[PammyBr]

Hello everyone

I have been looking at everyone's posts for a little while now but never posted myself or commented but I am now quite worried about my dad.

A bit of background - Dad is 85 and was diagnosed with PSP last year. What a relief that was because we couldn't understand where our dad was (I'm sure you will all understand that!) and the diagnosis at least gave us the explanation as why he is like he is. In April this year, when he was falling regularly he decided he needed to move into a care home as he was frightened (I had been frightened for a long time). It was pure fluke that he got diagnosed on an admission to hospital in October last year following a fall when he had knocked himself out and a Registrar with an interest in PSP examined him. All those years of ours and his frustration of a condition we knew nothing about and yet had been seen by Parkinson Consultants, general medical consultants and ophthalmologists to name a few (but that's a completely different story). My 84 year old mum has Alzheimer's; it's so sad - she lives in a locked in world of not talking, not moving, having to be fed, not really recognising anyone. Mum and Dad do now both live in the same care home but on different floors because of their differing needs.

A couple of weeks ago Dad started with a chest infection - since then he has had a urine infection but he has really deteriorated. He looks so weak, well he is weak. Before the infection he could stand and walk a little bit to the toilet but now? Well now he has a type of catheter, he won't eat, he will drink but can't hold the cup so someone needs to hold a straw. It is so sad, I am at a complete loss of how to help him. He just tells me he feels awful but is refusing his medication, including paracetemol, and says he's not hungry. I'm pleading with him to eat but you can see that he really doesn't want food - his favourite maltesers, toblerone and twix just sit next to him.

I'll be going to see him later. If he hasn't eaten today (which would be day 3 of no food) I think I will need to tell my brothers and sisters to come and visit him as our planned reunion party (at the care home) at Easter may well be too late.

OR is this a blip? Has this happened to anyone else? I just don't know and it's breaking my heart.

[Escada29]

Hi it sounds like if he is not accepting medication he must feel quite poorly and therefore not hungry or in the mood to eat. Sounds like he may have had enough of it all , its very sad and heartbreaking for family I imagine x

[PammyBr in reply to Escada29]

It is so heart-breaking to see - I was away on holiday last week and my (grown up) children did the visiting. They said he had been poorly whilst I was away but on Sunday he seemed really bright and looked well, so well I brought my mum to see him so that they could spend some time together. 24 hours later was a different story.

Such a cruel disease

[abirke in reply to Escada29]

Yes that's another thing the Drs' told us is that the body/mind will no longer want to take in anything food, water and especially drugs when death is the last thing...they are not hungry thirsty and surely not thinking how to heal themselves....B stopped eating and even though he was on a drip feeding machine, he was not digesting, so they slowed the drip until he got well enough to accept the food stuff....He probably lost 20 lbs (2 stone?) in the last couple weeks!!!

AVB

[PammyBr in reply to abirke]

I think you're right - I think dad's mind is saying that he's had enough now. He's lost a lot of weight in the last few weeks. So sad x

[Heady]

Who knows with PSP. There are so many depths that can be reached. Infections do seem to make life a lot worse. Especially urine ones. I wouldn't worry to much about not eating at the moment, if he can still drink. See if the home will give him some fortified milk shakes, Complan or some smoothies. Anything to get some calories into him.

Lots of love

Heady

[PammyBr in reply to Heady]

Thanks Heady

Unfortunately he has full capacity and won't have the milk shakes as they would "affect his diabetes" - honestly, he's so stubborn it's frustrating. They are so good and doing everything they can.

[Yvonneandgeorge]

PSP is the worst illness going, sounds like he has had enough, my husband said the same thing last week but is still eating and drinking, but coughing so much. Sound like you should have a family get together sooner xxxxx

[PammyBr in reply to Yvonneandgeorge]

Hi Yvonne

All of my siblings by Wednesday will have been to see Dad; just need to decide whether the grandchildren should come too. It's so difficult because he isn't the person he was and it is what we want those lasting memories to be.

My daughter was home this weekend and she was so upset it just breaks my heart even more. I'll let me brothers and sister decide what's best for their children.

Hope you and your husband are doing OK

xx

[honjen43]

Hi Pammy

I have happy memories of sneaking time to eat chocolate and/or Xmas cake after bedtime with my man! The "taste" and the "moment" are more important than the amount! He was diabetic too. Not that he ever adjusted his diet to deal with it! We told the nurse when she checked his blood sugars of his additional 'food' and so she noted it in the record so the increase in sugar level was explained.

When food intake is so little then you and I both understand that knowing sugar levels is relatively unimportant. See if you can explain this to him and help to change his attitude to his diabetes.

My love ate yoghurt, jelly and icecream for this phase. Jelly adds to their fluid intake so is helpful. Have tried the fortified milks. They taste yuck! but I think it is 'protocol' to offer them. My love enjoyed tea, latterly with a straw until he was unable to suck. Good old cocoa, Horlicks, etc will taste much better, but will not give added goodies of the fortified stuff.

I made a cuppa every time I visited as tealady cuppa was always too hot! And nobody else helped him! It takes more time than they can give! Sadly.

Tell him it is OK to eat what he wants. If he wants icecream and chocolate for breakfast - and you can get it! - then let him have it!

He may be embarrassed at having to be fed! My man was. I tried to help but nurses had more success with their "poke it in" method, until he refused. So sips and nibbles when you can. Make him smile. Remind him his interaction with his children/grandchildren and how life does come full circle!

The phase may last a few weeks. Keep him supplied with his favorite "everything". Don't think of effects in 'long term'.

Important thing is to keep his mood up and him hydrated to make him comfy as possible. I found staff helpful, dietitian lovely - but always behind the health events due to timelag in paperwork.

Get a dietician to talk to him and explain that the diabetes is not their main concern. Maybe coming from a nurse/doctor will make your dad change his mindset.

Good luck! And enjoy those moments enjoying toblerone or whatever together!

Thinking of you. And hugs to you both!

Jen xxx

[PammyBr in reply to honjen43]

Hi Jen

I just wish he would listen! Dad is a scientist by background and so intelligent that it is in a way standing in his way. It doesn't matter what we say, or indeed who says it to him (dietician, GP, Consultant) the management of his diabetes seems to come first......

But he is keeping well hydrated - the care staff are great and as distressed/upset as we all are about dad. The staff have a real affinity with us as a family (probably because mum and dad are both there and that we have been daily visitors for the last 3 years) which is a real help and relief. They go in at least once an hour, if not more, and make sure he has a full tumbler of his favourite drink which at the moment is 7Up!

x

[honjen43 in reply to PammyBr]

Hi Pammy

Have read the other replies. Sounds like you are being realistic. It's your dad who is not!! He obviously still has some fight left, even at his age, and you are so lucky you have found restcare that really CARES!

You are doing all the right things! Sounds like dad is not quite ready as he is still being single-minded!, so since care is good, family are visiting, and he is safe - then please try to relax a bit and think of your own wellbeing!!

It is hard to watch him, I know. Give him all the attention and love you can, and leave the onus of caring with those who will care as well for him as you would.

You need to come to terms in your own mind of what is likely to happen soon. Don't feel guilty you are not caring for him yourself! Or panic that you won't be there. Staff will let you know if you are needed!

If it helps, I found I was able to relax a little once I knew I was correct in my assumption that time was short, whether confirmed by docs or not!

I hope you can understand your own feelings and put them aside so you can devote your time to love and peace for whatever time is left.

I pray for peace for you and your dad and your family.

Hugs

Jen xxx

[PammyBr in reply to honjen43]

Thanks Jen

I keep thinking that I have come to terms with it but then second guess myself which I'm sure is only natural and to be expected.

I think that Dad knows that time is now short but I'm sure he doesn't want to go when there are any significant events (so today is the youngest grandchild's birthday, a son-in-laws birthday, it is my daughter's birthday on Sunday, we were away on holiday a week or so ago......) as he wants not just us to enjoy them but he wants to too. Unfortunately his body is saying/reacting differently.

We are so lucky that he is in such an amazing home where they really are caring. And I'm lucky that I have supportive work colleagues and an amazing family around me but I do still feel that the burden sits with me.

x

[honjen43 in reply to PammyBr]

That is only natural!

My man hung on until after our 50th wedding anniversary. My dad died a short while after the anniversary of mum's death. You are right!

It may also be that your dad will leave when you are not there, either during the night, or when you have just popped out! That happened in each case for me!

Take care!

Jen xxx

[Valbri]

I have read that there is fast progression and slow progession. My husband lived 6 years after diagnosis but he was only 72 when he died. Because of your Father's misdiagnosis or non diagnosis it is hard to tell what level he is at. However you did say that before the infection he was able to walk a little bit. For my husband, always falling, particularly falling backwards was the early indication that he had PSP. He progressed to not being able to walk or finally even move on his own,nor could he talk, he had a feeding tube and was completely dependent for everything but he had a strong will to live and wanted everything to be done to keep him alive. If your Father is not eating and needs help drinking i would hope he is being hydrated intervenuously. If he is refusing meds and food I hesitate to ask if he is perhaps losing his will to live. Ask his Dr. Hard questions may need to be asked. And above all else let him know how much you love him. I am sorry that your parents are suffering these horrible diseases for which there are no cures.

[PammyBr in reply to Valbri]

Thanks Valbri

As you say, part of our problem is that we don't really know how long Dad has had PSP, certainly looking back it's been for at least the last 3 years but probably longer (masked by dad caring for mum).

We are not at the stage of needing I/V hydration as the staff are making sure that he drinks lots of fluids (in a way we are lucky because he only really drinks cold drinks so that helps) and he has a catheter type arrangement so they are monitoring him closely.

Now we know so much about PSP and understand the key things for diagnosis it is all so clear (like you the falling backwards) but dad is now so softly spoken, slurring etc.

This thread and all the responses has been and is so comforting so thank you for taking the time to respond to me.

x

[abirke]

There are two main isssues with your dad that say visit him often with the belief that this could be the last. #1 he's 85 years old. The best you can do at that age is celebrate the life you had....Good memories laughter and just joy of the last few moments is the best you can ask for from an 85 year old person...and yourself, the loved one....#2 PSP This diagnosis has the word progress in it but it's not toward a better life (unless of course heaven is your goal) ....

So I urge you to get your siblings together and if possible visit him daily and or weekly knowing this may be the last time. You love him , continue to love him...talk with your siblings about funeral arrangements for your mum and dad.

We have a Do Not Resuscitate order for my husband with PSP. He got a bout of pneumonia, had to have a simple surgery to drain his lungs, so we rescinded it for the procedure...and went through emotional hell as he almost died...But he is 56 and I did not believe it was his time......but seeing him with that resuscitator in his mouth for a week I questioned sharply if I did the right thing! He's getting way better so prayers are being answered...

I don't believe that B could have survived had he been much older...and I am not sure how many more he wll survive now that he is much weaker.....Since Bruce has been diagnosed my sons have visited and loved dad like this would be their last time....it's been very wonderful...and since this illness my daughter has really stepped up and taken care of things....I hope yoou all have the same opportunity to love on your mum and dad like my kids have done for us.

((HUGS))

AVB

[doglington in reply to abirke]

Agree with all this. My husband is 83 and we wouldn't fight as much as we would if he were younger. An acceptance comes and celebration of the life lived.

I always say to our children to give their dad time and love.

love, Jean x

[PammyBr in reply to doglington]

Wise words Jean x

[PammyBr in reply to abirke]

Hi

I visit dad (and mum) every day or if I'm away of delayed at work one of my children go. I can't not go.

Dad has a DNAR in place but hopefully he will just go to sleep one day/night and just not wake up. You're right, he's 85 and has had a really good life. Mum and Dad will have been married for 61 years this March and that's a real achievement and who knows he may even be here for them to celebrate but in my heart of hearts I don't think he will.

By this Wednesday all of my brothers and sister will have either travelled over or flown in to see dad to in effect say their good byes. Decision now will be whether we should "allow" the grandchildren to do the same. My daughter saw him yesterday and was so distressed I don't want to give the same distress to the other grandchildren but I will leave that decision with their parents. The thing is my children and have seen my dad regularly over the last few years as we live so close and so have seen the changes. So, yes, they are still shocked at how he is at the moment but the others haven't seen this decline and so the shock will be worse and is that the right memory? The decisions are many.

Thank you for taking the time to reply. I have really found the responses comforting.

x

[abirke in reply to PammyBr]

I know I know. We have a 'grandson' who was given to my kids right after they were married....He's actually my daughter in laws sisters....poor baby nobody wanted him....He's rather been a blessing here as he is and most likely will be the only grandchild B will have. He met grandpa on the decline and has seen him almost everyday since the first day he came to live with his new parents. He even saw grandpa with the resuscitator in his mouth for almost a week....I don't know if it was great but the lad seems to be able to accept it all. Again he's here daily. Even B's doctors are shocked the next time they see him so it's hard to have a gap in time as PSP slowly yet steadily takes our loved ones!

I read a pamphlet by our hospice . It described the onset of death...OMG it's PSP....Now that shocked me!; that we are in a slow motion death experience.....I can't even tell you why that shocked me so much ....the progression is toward death, I know that ...but to have someone describe it as such while we call it another thing was indeed shocking.....hope that makes sense...

((HUGS))

AVB