S has been refusing his food, after only eating a tiny bit. Spitting up his medication, hardly drinking anything. Friday decided, this was only going to end one way. Bascially, told him gently but firmly, if he didn't have a Peg fitted very soon, he will probably die within a few months. Asked if he understood, got a thumbs up, did he want a peg? Thumbs went down, so again asked didn't he want to live any longer, the thumbs went down. Then I got waved away, end of conversation.
This evening, he was really struggling with his dinner, after only a couple of mouthfuls. He asked for his board to write on. Said he was having difficulty swallowing, so spat out all the food that I put in his mouth. Again, tried to see if he wanted a Peg, this time he wrote NO, in big letters. Then asked him if he realised he would die soon, without it. Got a shakey, but definite YES.
So my question is what do I do now? The only thing he can get down is rice pudding, do I just give him loads of these every day? Should I mix Complan, in with them, or respect his wishes and let nature take its course.
I did speak to the doctor on Friday, but he was as much use as a chocolate fire guard. S is refusing treatment, therefore there is nothing to be done.
Suddenly this has got very serious. He still looks well, colour very good, hasn't lost that much weight yet, although wheelchair bound, can still weight bear and is surprisingly strong. What sort of time scale am I looking at? Is there anything else that I can fed him on, that is easy to swallow? Or am I wrong in even trying to feed him?
I don't want to lose S, but if he has had enough of this #########disease, I can't bear to see him suffering anymore. I can't say I blame him, wanting a "gun," but I cant pull the trigger.
Lots of love
Heady
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Heady
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Heady George also does not want a peg, doctor at the hospital was also useless, it is there choice. What sort of life have they got? Hate to see George chocking every day, I think he has also had enough, saying he is going to die. My heart breaks when I see what he is like, he is still strong, but can't weight bear for long, but his mind is still there, as S is, they were clever men, what have they got left? Can't make a decision about money, bills, we do that for them, but I am sure they know what they want, and this s**t life is not it, hate this illness. Sending you a big hug xxxxx
Thanks for the hug Yvonne. I really don't know what to do. Getting very close to the end, regarding coping, but if he hasn't got not longer, I want that time spent with me. I WILL find a way to keep him at home. The word Hate, just doesn't cover what I feel for this evil, evil disease.
Oh Heady! It sounds like he fully comprehends the situation. I think he is getting ready to go. You are not pulling the trigger, you are following his wishes. I feel for you both!
Oh Heady it's so hard isn't it! Keith has lost so much weight recently and refuses a peg as well, he has four pots of nutrilis a day which is full of goodness and is supposed to build him up and I have taken a load of porridge to him and insisted to the carehome that he has it every morning with double cream, also I've suggested that they give it to him if he refuses his main meal, which he often does. His swallow is so bad now and it's heartbreaking to witness!
I agree with adding Complan to everything, it certainly couldn't do any harm!
I'm struggling tonight, they have decided that it's too dangerous to walk with Keith now so they use a hoist all the time, just watching him being hoisted around is so awful, I can't bear it and just burst into floods of tears all the time!
This bloody PSP is the most cruel thing I've ever witnessed in my life and it's happening to my Keith, the love of my life is disappearing before my eyes and I feel so helpless and alone 😥 xx
I really hope S can skip the hoisting part, I know I won't cope with that. Although, when he last fell in the nursing home, when on respite, he said he had to be hoisted off the floor. Didn't seem to care, so perhaps on their side, it's OK.
I will have to make loads of phone calls tomorrow, to see what I can do.
Heady this is very hard. This is much the same as happened to Derek. My only advice is to be guided by the hospice. Do you have contact with the Hospice at Home Team? They are very experienced and were very helpful to me.
I have spoken to our community nurse from the hospice. She. Is going to get someone to talk to S on Wednesday at the day centre, to clarify that he fully understands his decision. Then she is coming on Friday to see me.
It's just being put in the dark again, that is frightening me.
Like you I can't bear the thought of losing Chris but really believe in their right to make the decision. I agree you are not pulling the trigger. He can't do it for himself.
I know how I felt seeing Chris on the floor and unable to move himself at all. It is heartbreaking.
S has made his wishes very clear and however hard that is you have to go along with them .Of course you don't want to lose him but you have to help him take the path he has chosen even though it goes against everything you want .If he is happy to just eat rice pudding or ice cream give him that ..it doesn't matter .Talk to the people at the hospice they have huge experience .As far as going into a home or staying at home which will be the least stressful environment for S ? If you can answer that one then take that path .
Oh, Heady. It feels so different when the reality hits doesn't it? In my work I helped people through the last months, weeks and days and if S goes in the way of most he will choose to eat small amounts of sweet foods that will keep him going. His appetite will lessen and he will call the shots and will decide when he's had enough both of food and living. I always wanted to be a midwife but ended up working at the other end so to speak, in my opinion it's every bit as much a privilege to help someone leave this life as enter it. Right now you will be scared and hurt that he feels ready to leave you but when it's over you'll know that you did it all his way and you will be proud of your own strength. You are so amazingly strong for everyone else I know you can do this. Sending you both much love and you a big drink!
Heady called out the OT to see George on Thursday, she said let's order a hoist, George can still transfer on the rota stand , but needs 2 people, had a phone call hoist will be here Wednesday, so quick, spent my afternoon. Finding a space for it in the bedroom, things are moving so fast. George is still poorly, coughing is bad. Heady you will find the right road to take with S xxxxxxx
Well said Dizz....if It didn't hurt so bad; knowing that you are helping them move on should be a comfort. I believe my husband will be in heaven some day and I want to do every thing I can to make his travel there safe and happy.
Thanks AVB. I realise that what I said is so much harder for you guys than for me. It's a lot easier to accept the passing of your 85 year old mum than your partner and best friend. My heart goes out to all of you x
Yes it is different. My mom died the same year as my husband's diagnosis. She died and I went on....I wonder if that's how it will be with B...maybe not that easy, but I do hope I can get on....
Thanks Ec, I know that without you and the rest of the gang and my faith (even though it doesn't sound like I have much) I wouldn't be as strong and happy as I am .
Thank you Dizz. My daughter feels the same as you. Always wanted to work with dying.
It's not knowing what to expect next, that is frightening me. Most of this illness, I have sort of had under control, thanks mainly, to you guys. But I don't know what to do next, except sit and watch. Not sure my newly acquired strength will stretch that far.
Heady, I know you can do this. It's not going to happen overnight and you'll have plenty of time together yet. Ask for help from the hospice nurses and if you both want him to be at home when the time comes they'll support you all the way and afterwards. I'm sure from what you've said of your kids they will help too. Think of all the times you've helped people on here (me included) and remember what a strong person you are, you are amazing, whatever and wherever this ends (probably with S waking up tomorrow and asking for fish and chips! This disease is a fickle b****r). Just be there when you can and don't beat yourself up if you can't. X
I can't keep myself steady. Strength may be there but I don't see it. It's coming so fast and I'm not ready after all these years. My heart is broken each and every day.
Are you seeing a counsellor or therapist? It really does help. When you Start to tell some else about your experience, it makes you realise how well, you are actually coping. Also, it gives you somewhere safe to cry.
Yes, Heady, I'm seeing someone and it helps. Hospice people are helpful as well but the downward spiral is so hard to take.
I see below the problem of fluids, Charles can't drink his 2 oz of beer anymore and liquids are such a problem he doesn't want to drink either. Squeezies and liquid yogurt and of course Egg Nog (perhaps with a splash of ??)
Heady he has to drink. Use a thickener in his fluids so he won't choke. When D has trouble swallowing they mash his food, like baby food in the rehab Have you tried that? They also mash his meds very finely and mix it with either applesauce or pudding. I don't d that at home. I asked D if he ever wanted a peg and he said definitely no. Actually I don't think he even knows what it is. He is home now but refuses to do his exercises, driving me crazy. Don't know what to tell you but lots of hugs.
abirke, I am still wearing a brace. Have to go for an x ray on the 14th I think and then see the surgeon on the 21st. Still no bending, twisting, lifting or driving. I have no choice but to break all of his rules. Always bending for something and run out to the store for something.
D is doing better, they released him from rehab but he won't listen to me and do the exercises he is supposed to do. Truthfully, I think they are the key to him being able to walk with his walker. His aide is going to make him do them. I can't. How are things going with you?
Hmmmm well I can still bend and twist and do so frequently to get B from chair to wheelchair and or bed and or toilet and or floor. and I can only imagine what pain you must inflict on yourself having to do same. PSP does not care anymore about the carer than it does its victim, am I right? I thought you were to have surgery in November....I won't ask .....
B is doing fine he is healthy lucid but more housebound than ever. No fault of his own as I seem to be really losing my ability to initiate....sh() I'm probably 'catchin' PSP and apathy is my first symptom...
Well keep us updated with your back I am glad D is doing better, but I was sort of shocked to hear that he was released from care knowing that his primary carer may not be suitable enough to care for him due to her own injuries.....nothing against you; just have they thought this through....It may cost them more to help them after a serious accident than it would be to prevent said accident through increased hospice time....just a thought......don't twist your mind around it!
His aide will be here every day for at least 2 hours and she worked with the PT there to make sure he will do his exercises with her. He is mobile enough to get out of bed, dress himself, etc. They know what my condition is and they really think she will be here all the time. A little white lie from us.
and why were YOU little white lying? So you could have your man back? I get that....He does sound quite independent . thats good. does he know how to right himself from a fall?....Most of my husbands falls were in same direction North easterly...now they are straight back or south if you will. But when I hurt myself I found that if he could get on his knees, and with a solid piece of furniture etc., he could get himself back up and I only had to help him keep his balance. I feel like I am being redundant....I hope PT has some really good exercises. Infact, if you feel like theres an exercise D does that we all could benefit from , please share!
You take care be careful please...I am feeling your pain ....though that doesn't get the laundry done does it....
The PT has a series of exercises that he is supposed to do every day. He had frozen up completely when I sent him back to the hospital thinking he had a UTI. Nothing, so they sent him to rehab since he couldn't move. I thought he was progressing with PSP but with him exercising every day there they got him moving again. I am very confused. Don't have a clue of what caused it. No changes of meds. Speech therapy which they stopped when he could eat regular food again and swallow without a problem. What does he have? Is it PSP? He walks very slowly with his walker. Knows about my back and he has Dtr appointments that I have to get him to. He has to be able to lift his walker and put it in the car, then get in without my help. A lot to do and have 10 days to get him to the Dtr. I don't know why the exercises work but they do. BTW, his aide does the laundry for me. She knows I can't bend. I am in pain now from sitting at the computer with my brace on. Going to bed.
Exercises help my guy, too. Started a new round of PT Friday, and just the stimulation of returning to the clinic and meeting with the therapist we last saw a year ago had him walking and bending as if the year of deterioration since had not happened! Amazing.
His aide does your laundry! And to think I was trying to make a joke!!!Lol.
It is strange that he responds so well to Speech and physical therapy, but don't look a gift horse in the mouth I suppose...I just read ec's post and I do have to admit, B will step up to the plate when there are people other than me around. But quite frankly, will slip back to the "easier" when its just us. Though he has gone down alot since our first day at the gym....people watching or not! and swallow therapy with the speech lady only led to a PEG...
He is 79. He does try to take advantage of me but knows about my back. I don't know what I am going to do if he doesn't respond this time. I do tell him that if he doesn't do them he will have to live at rehab permanently. That motivates him at well. I am convinced it is the exercising that keeps them moving. Getting him to do them for me is another story
Yah I have found they have their own agenda or at least excuses. His speech path rejected him 3 years ago but under duress said ok last month......she is very sweet but terribly docile....and doesn't assess the moment very well.
And what would happen if yu tell his aide he has exercised? Would he come a runnin? hahah
Prob would, he just will do one or two with me. She dances with him since the PT told her just keep him moving. He frustrates me but he is moving better and seems stronger so we will see how it goes.
Are YOU ready for this decision? I do not liken refusing a PEG to using a gun. Nature may be at play here and to me thats ok. B is not quite to the point of death. had he said he did not want the Peg, I would have been ok with it, and a widow now.
It takes days to a couple of weeks for the body to succumb from the lack of water. It takes a little longer to succumb without food. I think I wrote to you about the inevitable road we must all walk...which leads to death. We all going there....If he chooses not to have the peg, he's just going down Inevitable Road without the hand of man intruding.
I'm not ready for any of this, which one of us are? This will be S's decision and I will respect it. I am trying not to influence in any way, even though my heart is breaking, I am keeping strong in front of S. He has his life back in his own hands now, power again, for the last time. There is no way I am taking that away from him. I would never forgive myself.
Yes, it is so hard but you are right the one last thing he can control in and for his life is this decision. Well it sounds like maybe you are prepared my friend. I tend to get very type A when in high stress....but I know that I am almost as tired as Bruce is.....I hope that when the time comes we can all do something that for a moment sets us truly free....like go to Budapest with a bunch of friends! Or whatever...
EC, that's all I really need, is a good hug. Of course I need advice and help, but that's what the professionals are for. The hospice are aware now, so they are going to talk to S on Wednesday, when he goes to day centre. I just him to completely understand the implications from somebody else, who knows what they are talking about.
You think you know it all and understand everything about PSP, but I feel as if I am floundering around like a novice.
Oh Heady you are not a novice, unfortunately you are a pro and fighting PSP...S will guide you, it seems weird that until now you have guided him, but now the tables are turned...take his lead
sending you lots of love and hugs, keep strong my friend
Heady, my heart aches for you. My Dad is very near the same, needing the feed tube and doesn't want it. He can still drink liquids without thickener but I cut his food very small and some meats I put through the mini-blender. I add nutritional supplement to his food, and sneak in spinach to almost everything! He's eating less though, some days less than other days. I really hoped Daddy would say he'd take the tube when the time came. To me it's not the same as life support! I dont know that Daddy even really understands what the food tube is. If it comes to that time I plan to try to explain to him that the surgery for it is said to be very simple. Oh and I've read that when they refuse liquids or food, putting ice chips in their mouth will help ease their discomfort. They actually die from dehydration. Also you can add flavor to the water before you freeze it for the chips, like with citrus. i'll be praying for you dear Heady. I'm so sorry, so very very sorry.
P.S. another food that's easiest for Daddy to swallow is mashed potatoes. I add butter, heavy cream, cream cheese for added flavor. They can be frozen in sandwich bags, just tear the plastic bad off before heating in microwave. You'd never know from the taste, that they were frozen.
Heady, This is exactly what happened here. Chris clamped his teeth and wouldn't eat, only drank tiny amounts. Last Christmas we had my daughter's friends out, two couples with three kids under four, so ten in the house and he did actually eat Christmas dinner without it being pureed. But from late November onwards he had been refusing food and he died on 20 January. He had wanted to die for some time and he finally managed it. Having a PEG was discussed soon after diagnosis. He didn,t want one, and we never talked about it again. S would seem to have made his mind up to go and, I believe, you have to respect his wishes. Good Luck.
Hope I haven't raked up too many memories for you. I do appreciate your input, from the other side, so to speak. S hasn't drunk enough for years, which is now down to almost zero. All his fluids, I have made sure, has come through his food. Now this has dropped to hardly anything, he is going to be in trouble pretty fast. Thank you for the timescale with Chris, this is what I thought. Although I equally understand if the kidneys decide to pack in, that would change things. When we discussed Peg feeding last year, he said he would consider it and probably have one, but then his life was a bit better then, perhaps he has decided he has had enough. I will respect his wishes.
You are not stirring up bad memories for me at all. And I now feel I should add that his death was still a shock. We had expected him to carry on for longer. So prepare yourself, as far as that is possible. Chris had no infection, nor was he abnormally dehydrated, when he went. There was no post mortem so we have no idea what state major organs were in. It was as if he fell asleep by the fire. In fact, to end on a lighter note, our cleaner was hoovering around him and getting fed up that he wouldn't move his feet for her. i was out at this point. My daughter came in from her studio in the garden and instantly relaised he had gone. By sheer chance he and I had had a brief conversation (he could barely speak by then so it was head nods/shakes and hand squeezes) the day before when I said 'We had some good times didn't we?' Vigorous nod. 'Bet you never thought you'd end up in Turkey?' Emphatic head shake. 'Do you regret coming here?' Again head shook he squeezed my hand and actually managed a 'no'. I can't tell you how glad I am that fleeting conversation took place. And now I am upsetting myself. Try to get your 'closure moment' sorted before it's too late.
Thanks for that bit of advice. We did do a bit of that, when he could still speak, when we were in South Africa and that part of our lives was coming to an end. I thought he had gone last night. He was awake, made me get his writing board, wrote he wanted a beer, 11.30pm! So we were in bed, me cuddling him, while he sipped his beer. Totally off the scale for crazy, suddenly thought, is he about to die? Then he slumped on me. Thankfully, not this time, but I bet if he thought about, thats how he liked to go.
I bet your Chris would have had a chuckle at your cleaner's annoyance.
He certainly would. Not to mention the fact that he died in a new pair of posh socks. Our Christmas guests last year did not know what to get him so nice warm things to wear were agreed. Someone, can't remember who now, gave him a pair of hand-knitted wool socks from some posh shop in the Lake District. He was wearing them for the second time when he died. We had to wait for a couple of hours for duty doctor to come and certify death before local burial practice began. I lnew that once they had removed his body from the house (for washing and prepring for burial) it would be goodbye to the posh socks. So for two hours I thought about removing them (our feet were same size and it seemed such a waste) but couldn't pluck up the courage. My cleaner asked if he had his own teeth because if not we should get the false ones out as "they'd come in useful". I told her he had his own teeth, but didn't dare mention the socks. I shall now never forget those bloody socks.
Oh Heady, I only just saw this - I know you want this over and done with. There is no easy way out, we can only help with their wishes, however hard. I am so sorry. Know that I am here when you need me.
I used to make Brian angle delight using milk shake and milk powder plus good old complan and if you can get it prescribed I used to put pro-cal-shot in as well just for good measure. Jane xx
I do put Complan in things I can. But this morning, tried for the first time with his rice pudding. His Carer said it was rejected straight away, he did eat the replacement though.
Brings the memories back.In Des case fierce determination while he clenched his teeth and anger when we tried to moisten his lips.If I had my time back with him I would sit and hold his hand instead of concocting what I hoped was irrerisistable drinks.Thinking of you and S,it is so hard to do nothing,well thats what it felt like to me.Love p
Oh, I done the concocting!!! That just lead to more tears. I think we are getting close to the holding hands bit. Thank you, I will try and remember what you have said.
Oh Heady I feel for you i really do. But I'm going to ask you a question that may seem cruel. For whose benefit are you trying to prolong his suffering? Yours or his?
Of course you want him to live and stay with you - but at what cost to him? You say the doctor was no use - in what way? Did he say to do what S wanted - which wasn't the answer you hoped for?
You never know S may yet change his mind but at the moment you can only follow his wishes.
This is sent with all the goodwill in the world. I've been widowed twice and know exactly how it feels.
Hi Janlaine, don't worry, I felt your goodwill. I suppose that's why I am in turmoil. I don't want him to die, but I equally don't want watch this terrible disease make him suffer anymore, or me come to that.
I think the doctor is bloody useless, as I was asking for advice, what to do next. I never had to care for a dying person before, I don't know what to do. Surely, there are going to be pain problems, which I won't be able to shove a couple of Asprin down his throat!!! He just felt if he was washing his hands of us.
If S doesn't want a peg, I will support and fight for him to be allowed to take some power back into his life. But I need to be told what all this is going to look like, so I can be there for him.
My heart goes out to you, having had to go through this twice.
Oh heady - tears in my eyes reading this. What a dreadful situation! Thinking of you - I know that you'll do the right thing - however difficult. Sending love X
Oh Heady. It's so sad. Colin wanted the PEG but 10 months later decided he had had enough. They need to make this decision, they can't do much for themselves so this is the last independent thing they can do. Go with it.
That's my thoughts NannaB. S's last throw at having some power back in HIS life, probably for the first time since PSP got a good hold of him. There is no way anyone is going to take that away from him. They will have to get through me first! I need someone to vent my anger on!
Definitely agree with this Heady. Derek and I had lots of conversations about having a peg at various stages of his illness. He always kept an open mind and we both decided that it would depend on his quality of life at the time when he was unable to eat enough to keep him going. In the end he decided that he had had enough and, although I kept trying to get him to eat all sorts of puréed and tempting things, in the end the hospice team gently pointed out that it was never going to amount to enough to sustain him and he had already indicated that he was ready to go. Once I was able to accept that, the hospice nurses took over and he was made comfortable and had a syringe driver for pain relief and anti-anxiety medication. It was so well managed and he was peaceful.
I do hope you both get the same level of support that we did from caring nurses with lots of experience in end of life care.
Hi Heady, have you tried baby food, nutritious soups or let your imagination run riot with anything soft or downright sloppy. It may be that S is just feeling a bit down/depressed at the moment (and who could blame him ?), so try to weather this storm and see how he feels in a week or so. P is dogged by a persistent UTI at the moment and is not eating or drinking much again and when he does try, it`s a struggle.
Meanwhile my prescription for you is a large glass or two of wine !
Dear Heady, I so feel your pain and anguish, this crappy disease and it's awful symptoms is just beyond words. Ben has almost completed his Advanced Care Plan, stipulating that he wants no intervention that will extend his life, the only treatment he will consider is to make him as comfortable and pain free as possible.how I wish Dignity in Dying was made legal here, it is the way that he would choose when he's had enough. Our local Hospice is building three cottage hospices where you you and the family can go to nurse and care for your loved one with the support of qualified staff, I'm hoping they are operational when the time comes, it's the thought of doing it all on your own that is scary and just not knowing what to do for the best. I am thinking of you both and send a comforting arm around your shoulder to help you through.
I know exactly how you feel! I am so sorry. This has happened to my husband, too. However, he did rebound again. This time less talkative, less energy. It's a very slow process, it seems. The refusal to eat is a terrible feeling, because you know that it is close. Hang in there, this really may not be the end. Part of the evil nature of this disease seems to be the unpredictability. Hang in there, best you can! Sending virtual hugs.
Hi, S is not refusing to eat, just can't. Like everything else, he doesn't know want to do with food anymore. I put it in his mouth and it falls out, or he takes and puts it in his cheeks and accepts the next spoonful, until there is no more room, then he starts choking. That is then the end of the meal. If I can get him to chew, then things work, but that is getting increasingly harder.
Yes, it was the same with my husband. It wasn't really a refusal, but the inability to swallow. I had the same experience with spoonfuls of food in his mouth and he wouldn't swallow. Then I would have to dig the food out of his mouth. This still happens, but it is not consistent. I have found bottled smoothies in the produce section of the grocery store. They are second to a nectar like consistency, and they're very healthy and palatable. I keep those at all times, and I let him skip those in between bites. I bring them to every meal with him.
I just wanted to let you know that you and S are in my thoughts although there is nothing I can do of practical help, or usefully add to the replies you have already received.
You are both going through an experience in which only your love for each other can dictate the path.
It maybe a while yet but
I found the most practical help, in managing comfort levels, came from professionally qualified hospice outworkers, their experience and kindness was invaluable.
Thanks Jerry. I have been in touch with Clare at St Peters. She is going to get someone to talk to S, to make sure that he fully understands the implications of refusing the Peg. Then she is coming to see me, for the practical side of what happens next.
My dad has also said under no circumstances does he want a peg. He is managing pureed food but has started choking during and after eating and drinking. I take chocolate mouses and at one point he was eating up to five a day and the chocolate pots are good as they are thicker but now it is sometimes hard to get one pot down him because he is tired all the time and then says he's not hungry. However hard it is for us to watch our loved ones refuse a peg it is their choice and however hard it is to support them in their decision and be selfish to want them to stay because we need them and don't want to lose them I have finally accepted that this is my dads decision and I have to stand by him. I have no idea how my dad copes with this awful disease so I feel he should make the decision. I'm not sure if this helps but please be certain of one thing his love for you will never waver. Thinking of you and sending love xxxx
You have mentioned that S is still looking well whereas my dad is now under 7 stone. My dad did have a time where he had trouble swallowing anything and was in bed for four days in a row which is so unlike my dad. I started to panic thinking that this was it I was going to lose him but then he perked up again and magically was able to swallow again. This disease is so unpredictable you never know what is around the corner. To have some power over this disease must make him feel whole again. I think sometimes we put so much pressure on ourselves to have all the answers when we are just husbands,wife's etc not Drs.Hang in there lots of love xxx
I agree, we all put far to much pressure on ourselves. But when you get NO support from the medical staff, it's little wonder. Our loved ones need answers, therefore we have to find them.
I feel for you as we all do. And it is something we are all going to have to face, sooner or later. I can only offer the question, "If I were in his place, what would I want to be done to/for me?" Does that make sense?
What a complex and philosophic statement Charles told hospice. My husband cannot express his feeling like that but can agree or disagree with my concerns. My foster grandson asked him to go play (not sure, words were garbled) but B said "I can't" and the boy could sense that grandpa's answer wasn't gonna get better with the usual argue that ensued. That may have been more on grandsons side than grandpas . But grandpa conveyed a message.
One thing that B does still have is his fantastic memory. I can ask him anything of the past and he can answer it...people are astounded....even my kids... It's hard to see the body such in disrepair as it were , and the mind still so sharp. My husband some time ago agreed to the PEG, but like I said to Heady , had he said no, I would have said ok. It's good to hear from you Cc....
huh?what are you talking about....OH YAH I remember hahahaha lol
Isn't it amamzing how the TAU does not affect the memory part of the brain if infact there is a memory part....I mean Alzheimers and dementia lose there memory...is it because there is not the plaque build up?
I would have to regoogle I can't remember the exact cause of either disease....and that's no joke....
So what should we do with the gift still given us; our husbands good memory; should we start making a diary.....it tires B out too much to talk or even retrieve language/words to express what he knows....so it's still locked away.....hmmm...suggestions?
I googled dementia, a few of the components is loss of reasoning skills ,loss of memory, changes in behavior. my Husband's neurologist does not suggest that he has this, Since he has displays one only of these 3 components, reduction of reasoning.
AS for me, loss of memory and reduction of reasoning ......sounds like I gots it! Case in point: I was looking for my ATM card this morning ...it was in my hand!!!!! OYVey
I am not going into a nursing home....just take me out and drop me off in the forest somewhere....if I don't make it, well, survival of the fittest, baby hahahah
Aww Heady, so flaming difficult and a real tug on my heart strings reading this!! 😓
Dad has a lot of fortisips, it's like a milky drink comes in all different flavours, full of nutrients and protein and all the calories one needs, especially if they have 3 a day!
I suppose this has to be your husbands decision and do I blame him for not wanting the peg? No! My view is it's just a life support machine and when your life is already shit what's the point of dragging it out? But that's just my view and one that may be disliked....
Equally this is a heartbreaking time for you but again you have to respect S's wishes.....
Love the cuddles! Yes, life is shit and extremely heartbreaking. But this is one decision that S can get some power back in his life. he has hated this being out of control, reliant on others. So for the first time, since PSP took over, S is in charge. Nobody is going to take that away from him. Certainly not me, I would never forgive myself.
S doesn't like the Fortisips. Rice pudding, with lots of double cream! Tried to sneak in some Complan this morning, that was quickly rejected. Hope Tesco have a good supply!
Indeed life with Psp is total shit! But I'm pleased S has been able to make this decision for himself!
The carers course I went on at the hospice said it doesn't matter what the person wants to eat so if it's only rice pudding with double cream that's fine, its calories so go with it!
So sorry to hear this Heady but also glad S is able to make his wishes clear. I was spared a lot of this heartbreak with mum and she chose a PEG, but big hugs to you. Like someone else said, focus on enriching his days with conversations you want to have or music and movies etc. if S can drink little bits give him whatever he likes! Milkshakes made with banana and ice cream so tasty and thick, mousse, cream, buttery fluffy mash etc, those fortisips don't taste particularly nice so can't blame people not wanting them. So stick to food/liquid he enjoys and can try to swallow if possible. I read somewhere ages ago about moistening lips with a sponge or using a dropper or small syringe to put small amounts of fruit juice on their lips and mouth to stop them drying out. Or a fruity ice lolly. The hospice or palliative care might be able to advise better. Love and best wishes to you both, hope S is able to enjoy some Christmas cheer and you get to say all the things you want to xx
AWWWW poor you two.We got to your stage in August.Meals and drinks were horrendous and v stressful.D ended up in hospital with uro sepsis and chest infection.After great discussion with enteral nurse and consultant D agreed and boy its been like a weight has been lifted.Not difficult to do at all.He still has the odd thick yoghurt to at least have a taste.There has been some weight loss but less stress at least on the feeding front.Oral hygiene is important. Take care Heady,its a tricky decision xxxx
I have nothing but the utmost respect for you and all the caregivers out there. I understand from all what I read how difficult is for you all. I'd offer some words of encouragement, but I think you (all) need something more. xx
Everyone has given you wonderful pearls of wisdom on suggestions of what food might be able to be swallowed. When I was trying to build mum up after she lost so much weight the dietician suggested adding powered milk to yoghurts, cereal anything it could be added to along with full fat milk or cream, olive oil. This may help maintain a bit of weight so alot isn't lost rapidly if he doesn't want to eat or can't.
I hope the hospice can give you advice on what to do, sure they will do.
It is so complex for all involved and I can't imagine when I get to this point how I will react as it must be so upsetting to hear someone say those words they want to go. We don't want to see them suffer anymore but don't want them to go either.
Hi heady, dad has a peg the last 4 years now. he didn't want it either. we also give him baby food, and use a blender to blend everything. Some days he will only take half the peg food somedays it's all peg food and nothing by mouth. It's probably fear so let him know it'll be ok not to be afraid and he can still taste food. good luck x
Dear Heady. I really don't know what to say to you at this awful time. You have been so wonderful to everyone on the forum with your advice including myself. PSP is so devastating in life and in death. Take care of yourself and surround yourself with loved ones, don't do this on your own, you need to be supported as well. Xx
They know when it's time or when they have just had enough. I could see the sadness in my Les's eyes. Awful, horrible, evil disease! The mind still sharp, but the body was ready to surrender. When the ambulance came and the medical workers tried to revive Les, I wanted for him to live forever with me and hoped that they would save him! I also knew in my heart that Les wouldn't have wanted to be saved because he knew he was very ill and knew the difficult journey ahead with this awful disease. I truly believe that Les knew when it was time--time to rest in peace. So tough for those of us that are watching this happen to our loved ones and also tough to live without them! Today marks 4 months that Les has been gone. I miss everything about him! As I reflect and journal my grief, I am so grateful and blessed to have had him in my life. He truly was and will always be my KNIGHT IN SHINING ARMOR! I look forward to the day when we meet again.
My PSP friends (my online therapist :)), you all are on my mind and in my prayers everyday. Blessings.
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My David struggles no more
Here we are...once more ( hopefully). 
Eating is optional for my sister
