PSP Association

How do you know that your are doing enough?

This probably should be a reply to @kevin_1 post on lambic system, healthunlocked.com/psp/post... but I keep still trying to understand that post. So, Ill make this a new post.

I keep getting suggestions from family and friends for treatment of my wife’s CBD like cleanses, magnetic treatments, and gene therapy(which I dont think there is any), etc. Many of which I think are quackery, however I do feel guilt that I am not doing more than exercise, general care, and comfort. Her doctors have taken her off essentially all medicines(mainly Alzheimer’s medicines which did not appear to be effective in slowing the rate of decline) and we are just following her demise. The only think they are doing is gathering data to better understand the disease, but not treat it.

I continue to read and look for treatments and research for this disease in mainstream medicine, but there is no treatment.

How do you deal with this?

Bobby

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Hi Bobby, I suppose the simple answer is, you don't! There is no treatment, no medication, no nothing!

I think this is what drains us the most. The feeling there should be more we can do and along comes the guilt feelings.

But why and how should you be guilty, if there is nothing you can do. My answer was the exercise route. I took my husband regularly to exercise classes for people with Parkingsons. After he couldn't take part in those, I got a personal trainer to come to the house, twice a week. We were lucky, it was the same young lady, so knew and understood the problems. Steve was an extremely fit man before and these exercises, I am sure, kept him strong. Even at the end, he could still weight bear. Plus he enjoyed doing the challange, he could even walk, with her assistance. Mentally, it did him a power of good.

Get your wife out as much as possible, concentrate on what she CAN do, not what she can't. With the benefit of that wonderful thing called hindsight. I spent far too long fighting losing battles. Acceptance is a valuable tool, it will help stop you doing this and spend the precious time, cuddling your wife, making her feel loved. This is the most important part of your role. Yes, you are going to be her carer, but please never forget, first and foremost, you are her husband and that's all she will ever want from you.

Sending big hug and much love

Lots of love

Anne

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Thanks Heady. I think because of her physical fitness that we had seen more cognitive deterioration issues than physical. 10 years ago she ran a marathon. I finished it, but she beat me by 1 1/2 hours. She loved to run. Up to January she was able to run (only about 100 meters in January) better than walking. Now we are struggling to get more than 1/4 mile walking before she is dizzy and disoriented.

Bobby

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It will take a long time for the strength in her body, due to her running, to go. You must fight to retain that. I suspect you are thinking that exercises classes might not be her thing. I thought exactly the same with Steve. He was a runner, rock climber, played Squash and was Male (sorry, but you know what I mean!) I thought that he would think the classes were not his cup of tea, but he really enjoyed them. He felt he was doing something positive, rather than sitting around waiting! I couldn't get Steve to walk very far either, there was always some excuse. It was our Physiotherapist that recommended them, or phone your local Parkingsons group, they should know where to find the nearest class.

Lots of love

Anne

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Hi Bobby,

To echo Anne - you are doing enough. We know there is no turning back the tide on the march of this condition.

Too often we question ourselves and feel guilty for things that are beyond our control.

You are enough, you do what you can and you keep doing it...nobody can or should ask any more of you.

Much love

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Agree with the others - you can't know when you are getting it right.

I accepted the neurologists opinion immediately. As soon as I read on-line Chris was a classic case. So I focused on keeping him mobile and involved. This meant he declined slowly and the neurologist was always pleased with him, although he was declining.

It meant that when he was hospitalised with an infection he became immobile and declined very quickly.

So really, like the others say, its about keeping moving and interacting and enjoying what you can in life.

love, Jean

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Just love and care, and carry on as normal as possible. Forget the "experts" and keep normality and familiarity as long as you can.

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Hi Bobby

I'm sorry I must have written my post poorly on the other thread. Clarity is not my strong point.

Meanwhile you ask a different question - a good down to brass tacks one.

You've had what I think are some great replies. So this is just another angle.

What you are doing sounds great. It's a much as anyone can do.

Most carers never feel they are doing enough. No matter how much they do they often feel there is more they should be doing. We are mostly all like that.

So the problem then becomes what is the weakest link in the care delivery. Bluntly, it might be you and I and all of other home carers. Not always though.

Let me explain my take:

In a good Nursing Home you have cooks, nurses, carers, maintenance people and more. Each member of staff does, say, eight hours a day. Then they go home to relax and be with their families, whatever. Home carers are on the job 24/7. Even with carers coming into the home, the home carer is mentally on the job most of the time.

Most often we don't get the breaks we need and quite often not as much practical support as we need either. It can be exhausting.

So, in this light, I would say that it is not, "How much is enough." but how much can be done without the carer exceeding their limits. Everyone has different limits. It's just how it is. Mine were not as great as I would have wished, but I expect most carers feel that way.

If any of us exceed our limits for too long then we might become unable to continue.

The spouse, daughter, son, home carer is the critical lynch pin to keep it all together.

So I would say a key focus should be ensuring that, as far as possible, we look after ourselves first and then from that point of strength we do the best we can.

Looking after ourselves, for me means - get sleep, exercise, time away from caring and try to keep a little social life going.

Sounds selfish? I would say no. If you go down it all crumbles. Also by looking after yourself as much as you can you will be more able to spend more quality time with your wife and do better care.

Being realistic, seldom do home carer's get enough breaks, sleep, or downtime.

I was at breaking point a few times. I learned the hard way.

Well, that's my take.

You sound very caring indeed.

Wishing you the best.

Kevin

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Its like the Airline Attendants always say: You put Your O2 mask on first: You can't save your child if You are dead!

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Well said, Kevin. As I was the primary caretaker in the home I relate. I have shared that looking back at my father's decision to put my mom (stroke) in a "home" and spending the entire day with her, but coming home after dinner I now realize was a wise decision. When she needed attending, he would call one of the attendants. My mom was very resentful, at first but after a couple of months totally adjusted. I often also think about the fact that my mom had several different personalities attending her to relate to... rather than two or one. She had favorites and one asked for "that favorite" to help her.

My son only had me and his paid caretaker. I'm sure his paid caretaker, as I did, became frustrated at times.... when you have a facility with many, there are more people to help each other out with frustration and fatigue.

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Kevin,

My comments on your post did not mean to imply it was poorly written, It means that it was deep and I was still getting my head around what my Limbic system is and its impact on my emotions.

You are spot on in your recognition of the physical and mental drain of being full time job as a caregiver. I know I need to take care of myself to be a better care giver and because I dont want to pass and leave the burden of my wife on my kids.

I retired at the end of last year to spend more time with my wife (as I dont believe there is much more time left) and was dissatisfied with the home help assistants (because my wife didnt like them). I dont mind the physical drain of sleeping lightly(to ensure help if she wakes in the middle of the night), cleaning up after her, getting her ready for the day, etc. It is the emotional/mental drain when she is unable to communicate. At first it was the volume, but now she can gets so frustrated because she cant recall words to communicate what she wants to say. I understand about 5% of what she says. This usually results in sobbing.

Thanks for your wisdom,

Bobby

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I can really relate Bobby; My hubby has lost 90S% of his speech - it was one of the first symptoms - and daily I strain and strain to hear and interpret and guess what he is saying or trying to say. It is absolutely exhausting - and the speech-tech is too simplistic for what he wants to convey. It will possibly be useful once he is totally nonverbal - but it doesn't help us now.

Anne G.

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I well remember that feeling, Bobby. The last time Chris spoke to me I had no idea what he was saying. I didn't know if he was cold or wanted the music off or what. I broke down at that point because it felt so hopeless for us both. He died within a couple of days and I now think he was telling me he had had enough and he stopped swallowing.

Our last communications were squeezing. [ and kisses of course !!]

Its a dreadful disease. My thoughts are with you.

Big hug from Jean xx

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Hi Bobby

Noo... I just think that if my posts aren't easy to understand then I've not got them right. I'm very good at beating myself up you know. ;)

I'm so pleased that you got something out of this.

Do PM me about the lymbic stuff should you wish.

None of us find this twisting road an easy one.

Best to you

Kevin

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You sound amazing Kevin-1, I am slowly beginning to realize that I have to take time out, hard as it is, I left Leon today, after he said" Don't leave me I am scared of dying," on his alphabet board, what do you do. I don't have any idea how much time he has, but it is so so draining, daily visits of 7 plus hours, he is cutting his feeds down, now from 1000 mls daily to 400 mls daily, (P.E.G.) I secretly put more in when I do the feeds, but wonder if I am doing the right thing. I don't have any other life, except house/pet sitting which keeps me sane. I feel so guilty when I say to him that I have to have time out. This site is also brilliant for me mentally, knowing that I am not alone.

Thank you and everyone else here

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Hi Marg

Thank you

Yes, PSP takes over our lives. It's natural that it does I guess.

I'm afraid I only do three hour visits daily, but that is my limit of trying to be there for her and do the other stuff I need to do.

Is it Leon cutting down his PEG feed, or the doctor? Liz can just manage fluid feeds, but keeps refusing them.

The dying thing. That is a tough one to deal with. Here are a few thoughts in case they might prove useful.

Liz was a committed humanist without one religious bone in her body. A little way back when she was barely able to speak she indicated that she was frightened of dying. That was so not her!

So I found a humanist paper on dying and read it to her. It was very well written, but naturally in summary it merely said, "and then you die." I could see this was not hitting the spot. I had thought of getting a humanist counsellor in to talk with her, but they would not be able to talk with her properly and did not know her.

In the end, after much heart searching I decided to read her some accounts of near death experiences. After reading one I would muse on the fact that there seems to be more to life than just our body and mind. I always stressed that each account reported how warm and comfortable it was whilst they were 'officially' dead.

Gradually we built up a comfortable model, acceptable to her, of there being some continuation where we might be together again.

I also put a lot of stress on the painless slipping away of pneumonia.

Well that was what we did. It worked for her.

I do hope there is something useful in this.

You sound wonderful in you love and care for Leon.

With a little bow of respect and warm wishes to you both.

Kevin

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Such a difficult subject, Kevin. Chris and I shared your humanist views. The truth is no-one knows how it is after death. We just have different beliefs. I tried to imagine " not being " and it is terrifying and unimaginable.

Chris seemed to be accepting. I now wonder if I should have talked more about death towards the end but, as he couldn't talk, I was afraid of bringing anxiety that wasn't there for him. We always talked a lot but I was much more reflective whilst he was " action man ". I have decided that his ability to stop eating fulfilled this for him.

I hope there is some future " continuation " beyond our understanding.

Lots of love to you and Liz, Jean xxx

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Hi Jean

Yes it is a difficult subject. I had my heart in my mouth all of the way through the 'talks'. I kept saying, "Is this OK with you." and then waiting for a hand squeeze to confirm.

Generally people are very good at getting their own answers and as you say raising issues where there are none could make them extant.

It is so difficult and sometimes it is like trying to find our way in a fog.

I do hope there is a continuation. I would love to be with Liz again, but I doubt it will be in the personified form if it is.

Who knows?

So I will do my best now and hold her in my heart when she is gone so that she can be with me.

Love to you

Kevin

xxx

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Yes. I too hold him in my heart !!

xxx

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Thank you so much, you seem so so knowledgable, I will try some of your advice, I do try to tell him he will not know that he is actually choking to death, (it is his major fear) and of course being alone, the part where there may be continuation of being together, he is an extremely jealous person, and has already asked(via his alphabet board) whether I will re-marry,??!! So much help you have already been to me, I thank you so much, and a big big hug to you

Marg

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Whoops, forgot to answer re Leon's feeds, it is his choice to cut them back and sometimes refuse any at all, as he did yesterday, when I asked him why, he said it is because it hurts to poop and pee ??!! he was constipated and then after movicol for 5 days, diarrahea, ohhhhh the endless circle. However, he cut his feeds back before, he says because had diarrahea, he was on antibiotics which also made him nauseous, he now however has said no more antibiotics and no resuscitation.

Hugs Marg

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Hi Marg

Gosh, the whole feed thing sounds very difficult.

Quite a roller coaster for you in many ways.

If he wants no antibiotics and no resuscitation he will need to get a Do Not Resuscitate signed up and in place, but I guess you'll know that.

It's so difficult for both of you! :(

Hugs and smiles back at you

Kevin

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Morning, Yes have already got all that done some time ago, prior to getting the P.E.G. Tube in in July last year. Also have all the Power Of Attorney etc done.

Hugs and smiles back Many thanks to you and everyone on this site, it is very supportive in so many ways

Marg

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Marg

Goodnight and have a good day. Is that weird or what?

None of us finds it easy - Indeed it knocks six bells out of most of us.

You are doing OK :) Best any of us can do.

Best

Kevin

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beautiful....... :-)

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Kevin.... :-)

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I agree with all the replies you have so far but every person with PSP or CBD is an individual with different wants and needs. C loved to get his exercise by walking in the countryside or by the sea. He hated doing the exercises given to him to do by the OT but I persuaded him to continue doing them until I realised they weren’t making any difference because his heart wasn’t in it and his condition was progressing. So I bought a wheelchair and he pushed it, walking along the seafront or in parks and gardens. He loved being outside and when he became tired, I pushed him. When he stopped walking altogether, I bought an electric wheelchair and we had outings at least twice a week, doubly incontinent, outings being timed for after bowels were opened, hoisted and PEG fed, until 3 weeks before he decided he didn’t want to live any more. What I am really saying is there is nothing we can do other than make the years, months weeks our loved ones have left as good as possible for them. If they don’t want to go out but love listening to music or the radio, let them. If they want to go out and you, as the carer are physically able, take them out. If they like reading, get audio books or read to them. Invite friends round for coffee or takeaways if your loved one is sociable so they can join in conversation and when they can’t talk any more they can still feel part of the group. I was blessed with good health physically and emotionally for which I will be eternally grateful which meant I could keep him at home but I told him early on that if I ever got to the stage when I could no longer look after him as he deserved to be looked after, that was when I would have to consider residential care for him.

Take no notice of those who make suggestions unless they have looked after your wife alone for at least a day and a night. One of my sons had good ideas, until I left my husband with him for an afternoon. As Kevin said, look after yourself. I’ve always thought laughter is the best medicine and kept in contact with folk I knew would make me laugh. I didn’t want to be constantly talking about PSP to my friends, I could do that on this site, so I made a effort to invite in or if I had a sitter, go out and laugh with positive folk. I could then come home and tell C the funny things that were said or that had happened to my friends and he would laugh in his funny humming way. I steered clear of negative folk who only talked about illness, his or theirs. I also made them laugh as within the horror of looking after someone, there were also lots of very funny moments. The sort of things that are awful at the time but very funny later, like when my husband fell backwards into the pond, his face just above the water, with tadpoles sucking at his earlobes. He thought it was hilarious, so did my neighbour who helped me get him out......after he was safely back on dry land.

Do what is best for your wife and you , not what others think you should do.

XxxX

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Spot on Nanna B, absolutely spot on. HilsandR

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Oh I so agree with all that had been said, you are doing we are doing so much for our loved ones, we fight for the right care, we fight for the professionals to understand what psp is about, we wear ourselves out, we can’t really do more than we do, you should all out yourselves on the back, people who loved ones are not longer with us, they did a brilliant job, and now the are helping us through all this. We are amazing careers because you give so much love to the people we care for. Yvonne xxxxx

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Totally agree Yvonneand george, Hugs and Cheers

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Dear Bobby,

I echo everything our wise and experienced members have said. Its one of the most heartbreaking aspects of the disease: there seems like so little we can do, and we're in a health culture that is always urging us to "fight fight fight! (Obits are full of stories of "brave battles") but there just isnt anyrhing with any science behind it.

Exercise to delay the end - focus on what she can do: find the small things that she enjoys and make them happen - keep normality & familiarity as long as possible - Just walk with her with love to the end 💑

Anne G.

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You are there and you are doing the best you know how and NO ONE can or should tell you differently. It is one day at at a time.

It's a tough lonely road.

Dee

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I too continue to look for answers . My children also keep searching for some way to make their dad better. Unfortunately , one of his first symptoms was a change in personality, lack of interest in conversation . Therefore, by the time he was diagnosed we never had the time to discuss his care, or his wishes .

I think that the old saying — Hope for the best, prepare for the worst, holds true. I was advised to get ahead of the disease, but have never been able to do that. Dans needs have changed quickly, but we deal with them as they come.

Some days seem overwhelming. I think it is unrealistic for anyone to say they will definately not put their loved one in residential care. Each person with PSP has special needs and each carer has different abilities, strength, knowledge and emotional barometer . I know not sleeping will be a breaking point for me as well as my inability to provide medical care . Many caregivers have suctioned their loved ones and help with choking. That would be tough for me.

By being on this site and looking for answers , you are showing how committed you are. You’re doing great

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Karyn,

You are so right and it is good to have this forum for those days that seem overwhelming so we can vent.

Wishing you and your family more better days than overwhelming days,

Bobby

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Hi Bobby. In my opinion, Heady is spot on. There is no cure, the illness will take it's course. Do whatever makes your wive happy and comfortable. Excercise is definitely beneficial. Good luck, Maddy

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