Ever hear of the PSP "road"?

[jimandsharynp]

I have an analogy I use to describe PSP patients and caregivers. I call it the PSP "road". I found that the PSP "road" has many twists and bends, pot holes, bumps and mud. It also has hills and valleys. Because the "road" has twists and turns all patients aren't on the same "road", at least not at the same time. If you are on the same "road" you can be sure there will be a fork ahead and you will part ways with the other PSP person. Often a "hill" rises on one person's trip or perhaps their “road” is smooth while others are having bumps, slogging through the mud or maybe a "flat tire" (breakdowns). For this reason both patient and caregivers are on a unique trip. Yes some of the "scenery" and stops (symptoms) are the same or similar but the actual "road" my be very different. It's frustrating. You are on this "road" and don't know when the "dead end" will come much less what you may encounter along the way. You stop for fuel perhaps a potty break then back on the "road" again. There are no maps for the trip and that makes it terrible. You can call friends also traveling a PSP “road” but they are on a different road or ahead of you on the same "road". It might be raining, cold, and dreary where they are at the moment while you are motoring along on a smooth patch in sunshine. They may call back "Watch this turn coming up" and have advice to help "Stay to the right and watch the construction area". Hope some of this makes sense to someone on the "road". If you miss a turn do a U-turn and go back where the road is smoother but as you turn back on the correct route be assured the road will change again. The journey for my Sharyn and I has reached a dead-end but we are familiar with the "road" and are here to help guide you and hopefully avoid some of the pot holes. We may even suggest a few restaurants (aids) to help you; the places we found helped us make it to the end. Oh, by the way avoid those hitchhikers (feeling sorry, worry, down in the dumps etc. They won’t help you). Don’t pick any up hitchhikers along the way. So relax, no matter where you are on this trip there are lots of traffic police and road service people to give you help when you feel “lost”. It’s hard but enjoy the trip because when it’s over you’ll miss the trip and your traveling companion. You two will never take a trip again.

Hugs to all, Jimbo

[Peter3]

Jimbo,

What a brilliant analogy. My husband and I see PSP in a similar way and at the moment we seem to have done a U turn in the last two weeks. Hubby, who has been unable to walk very far even with a great deal of assistance and hasn't spontaneously spoken for over two years has started doing both.

It feels as though the PSP has regressed. Some will now probably be saying "how wonderful", but sadly it isn't. Why? one might ask. The reason is, he has become impulsive again, getting out of his wheelchair and recliner and every time he has fallen over. He has cut his head, elbow and knees. Just as life use to be.

Did Sharyn ever have periods where she seemed to improve? I hope you don't mind me asking.

I'm pleased to see you have remained with us, I'm sure many of us are grateful for your wise words and experience.

Hoping you are giving yourself time to remember better times and to grieve.

Peter3.

[jimandsharynp in reply to Peter3]

Peter, Sharyn never had a real "recovery" or "getting better" moment. It was just a slow slide down hill. Yes I can see where a "well spell" could cause issues. I'll have to revise my analogy and include a U-turn description. Thanks hang in there and for God's sake stay between the lines. LOL

Jimbo

[Hidden]

Thank you, a very well written and incitful piece. I think though it says quite a bit about the carer as well. The PSPassociation have a piece on the stages of caregiving. Initially shock and then anger. And only with time and experience does acceptance and insight come. Unfortunately Ive not got there yet. Out of the two of us, my dear wife the patient, is more accepting but at the same time, she doesnt really understand quite how bumby this road is going to be. Shes just looking at the next bend and not too far ahead. Best wishes jmb

[jimandsharynp in reply to Hidden]

Thanks for the comment on my piece. I can honestly say after the initial shock we didn't go through the anger "stage". We just settled in for the long trip. Your wife has the right perspective. Don't look to far ahead. It's a somewhat long trip for most and each day is a gift so max it out in every way you can. Somewhere I read "Don't worry about tomorrow, each day has enough trouble of it's own". Jimbo

[cabbagecottage]

I refer to the road Journey.

Peter my husband is very up and down , we have days when he is much better than others . has been like that from the start .

It's difficult to recognise whether side effects of medications or progression . it's got us over a barrel.

[jimandsharynp in reply to cabbagecottage]

Cabbage, I can't relate to the up and down. Sharyn was mostly just a very, very slow advancing of the disease. Of course she didn't want any drugs other than her BP medications so we didn't wrestle with side effects of drugs. We were never a couple that medicated much even before PSP. Drugs are good if you have issues but by and large I think doctors are quick to give drugs to patients. I hope you can get things smoothed out. Hugs coming your way!!!!!!!!!!!! Jimbo

[suziewong]

Hi Jimbo, I think your analogy of The PSP road is very good and appropriate. I am at that fork in the rd now as my husband is being discharged from the community hospital Monday (at his request) after more than 12 weeks waiting for a care package which has failed to materialize inspite of Councillor and AM intervention. Our area has had a massive take over of care by one company to cut costs and they are still trying to sort out issues with existing care packages leaving many new patients dangling and bed blocking the hospital wards. My husband had lost the will to live, lost weight and virtually stopped eating until I started taking him home several times a week. He has now had enough following a bad experience at the Neurologist for our area who was very negative and just kept saying terrible terrible disease over and over. He also said my husband's disease had progressed very quickly. He got the nurses to phone me next day to take him home and was convinced he was about to die. All this upset brought to a head the length of time we have been waiting for a care package with no end in sight so he has now insisted he be discharged.

The Social worker has managed to get us 2 days a week in a nursing home for 6hrs if I take him and collect him, but unless the care package materialises by tomorrow we are on our own at home. There is the avenue of private care which is more expensive and we would have to find our own carers. I now leave it in God's hands.

I will try not to take any hitch hikers along the way!

Love Suzie

[jimandsharynp in reply to suziewong]

Suzie, I'm in the USA and am not familiar with what a "care package" is. Could you briefly explain it? If not I understand. When my Sharyn stopped eating much it was about a week and a half and she was gone. I asked her if she wouldn't eat because of swallowing but she said "not hungry". I'll never know if she did it on purpose or it was a physical thing.

I guess in my PSP road story I should have mentioned the NHS stepping in front of the car with a STOP sign or perhaps placing orange cones in the road to slow us down. Maybe throwing nails in the road? LOL Perhaps they are stopping us from getting the oil changed by not allowing us to use the car lift. Jimbo

[suziewong in reply to jimandsharynp]

Hi Jimbo. A Care package is where 1 or 2 carers are designated to call at your home 1 - 4 times a day to assist with Activities of Daily Living. In our case it had been agreed that 3 carers would come in twice a day 45mins am and 30 mins pm to assist with washing and toileting etc on getting up and going to bed. Because of my husband's poor mobility it was assessed that he needed 2 people to mobilise. I manage but health & safety regs rule that 2 carers are necessary.

The only problem is that it has not materialised, and once M is discharged fully on Monday, we will lose the access to this package as it has to be insitu before discharge, or so our S/W tells us. Suzie.

[jimandsharynp in reply to suziewong]

What a terrible time you are having in the midst of everything else. One shouldn't have to wrestle with the NHS. Hopefully it will get resolved soon! Jimbo

[jillannf6 in reply to suziewong]

hi suzie

have you got direct payments frm your local council cos then you can use anhy agency you like

i use Home Instead SEnior Care which is excellent nd sends the same caregiver each day and night and i know exactly who it will be &that they will be here on time

(no probs with organising it b4 the direct payment kicks in either)

they are more expensive than the normal agencies but well worth it = i got the idea of f this site 3years ago now

lol jill

[suziewong in reply to jillannf6]

Thanks for that Jill. Yes we have recently started with Direct payments. We have about 7 different carers come. 2 twice a day. Gives me time to sort meds and other little jobs. Sorry I missed the online party especially as it was so near my birthday tomorrow.

lol Suzie

[jillannf6 in reply to suziewong]

happy birthday to you happy birthday to you happy birthday dear susie happy birthday to you

and many more

lol JIll

[suziewong in reply to jillannf6]

Thanks Jill. We are just off to a Birthday lunch with some of our church friends. xx

[wifemo in reply to suziewong]

Suzie - it's absolutely wrong that you should be on your own.

You should have a social worker assigned to you - have you tried "jumping up and down and screaming" that he/she is not doing their job?

Where in the UK are you? Fairly local to me is MP Norman Lamb (Health Minister?) so his office would be the one for me to go to. Also our Neurophysio was attached to the local hospice, which has a "hospice at home" outreach service - she was a real powerhouse when things needed sorting.

Also try: Macmillan Nurses / Marie Curie / Crossroads.

Someone, somewhere should be able to assist.

Mo

PS At one time, we also had an issue with the care company - "care in the community" sounds good in principle but isn't properly thought through, in my opinion. I'm surprised the community hospital isn't being more pro-active, as they obviously would like the bed free for someone else.

[suziewong in reply to wifemo]

Hi Mo. Yes we do have a Social Worker. She has tried to push things and got nowhere. Today I had a phone call from an AM who is sending an urgent e-mail on our behalf.

Crossroads have agreed to come in on a Tues pm for a few hrs but do no manual handling so I would still have to be on hand if my husband needed to go to the bathroom. Will update everyone once I know what is happening.

Suzie

[wifemo in reply to suziewong]

Thanks Suzie - best of luck!

Mo

[Hidden in reply to suziewong]

Dear Suzzie. My heart goes out to you and your husband. Youve had a bad deal from social services. Do investigate whether your husband meets continuing care, which switches finance from social services to NHS. My wife is going to be assessed for this. We are told it makes setting up packages much easier. As for the present we have had battles with social workers, promises etc for months, but we should switch to double handed care on monday next week. Even so, it will start to cost us money as we really want to stick with a good local care agency (a small local firm), rather than switch to a larger firm. We found the larger more distant firms were very poor on time keeping. We were told that the agencies split regions on post codes as to which agency takes the lead for care, but that doesnt apply to the smaller agencies, so you may have a local one who would do you a good job. We too have been discharged from hospital 'on our own', so somehow keep strength and keep battling.

[suziewong in reply to Hidden]

Dear Jmbb sounds like you are going through similar problems to us. We do not have a lot of money for private care but if necessary we will of course go down that line. Hoping to hear something today from Social worker etc. Take care.

Suzie

[LynnO]

Jimbo

Your analogy is perfect! It is indeed a very long road with no maps in sight. My husband's progression is continuing, but he still has hours in the day where we seem normal. During those times I think...maybe...just maybe...then something happens and brings me back to reality. It certainly is a road trip that seems very lonely sometimes! Thank you for staying on here and sharing with us. I hope it remains helpful for you as you learn to live with the loss of your wonderful wife.

Lynn

[jimandsharynp in reply to LynnO]

Thanks Lynn. During the "normal" periods take advantage in every way you can. It's those brief periods that tend to get "wasted" because we are "busy" with other things PSP related. Just know that I'm here for you if you need to talk or require some help. In fact I don't mind if people email me if they are having difficulties. [e-mail] You're doing your best I can tell so stay strong and no hitchhikers please. LOL Jimbo

[LynnO in reply to jimandsharynp]

My dad always told me to never pick up hitchhikers!! Better advice now than when growing up! : )

Thank you!

Lynn

[Heady in reply to LynnO]

Hi Lynn, I know that part of the road, oh boy, that brick wall that keeps jumping out at you, when you least expect it, is not pleasant! I understand the loneliness as well, not ready for care help yet, but still could do with something, but don't know what! All we can do, is pray for the magic wand that we know is not coming our way!

Lots of love

Heady

[jimandsharynp in reply to Heady]

Heady, A brick wall? That would imply that you crash and can't proceed. Of course we all know that the "show" goes on no matter the obstacles. Repairs are made and the trip continues. LOL

[Heady in reply to jimandsharynp]

Hi Jim, it just feels like I hit a brick wall. Happily coping, like Lynn says, at times life can seems almost normal, (well our new normal!). Then for no reason, bang! I feel like a wreck, just that awful feeling, that I can't cope! I'm not coping! I don't want to cope! This week's episode was caused by a visit to see the Neuro, Nothing wrong, just seemed a total waste of time and effort!

I actually think I'm doing a pretty good job, I've totally changed in my personality, I think for the good, but I actually don't care. I'm getting S through this, in the best way I know how. I try to keep us both busy, but nothing that S can't cope with. I try and get us out as much as possible, we eat well. Still are doing some travelling. Not getting any support from S's family, but that seems to go with the territory!

I have just just him signed up with the Arnie approach,with is a intense physical exercise programme, specially for stroke victims. But will help anyone with physical difficulties caused by brain damage. Had two sessions and his walking has improved enormously!

So I am travelling on the right road, but like you said, each one is slightly different. I have to get use to mine having those blasted walls, that I have to keep climbing over. Hey, just realised where I'm going wrong, I hate heights, so going to have to learn to tunnel under!!!!

Keep strong Jim.

Lots of love

Heady

[LynnO in reply to Heady]

Hi Heady,

You are right about not know what kind of help to get. There is still enough "normal" times to think we can manage on our own still, and at times some type of equipment might be helpful. I'm seeing a PT for my back and she was showing me ways to help B walk and get in and out of chairs. She said at the next Neuro visit, when the doc asks if B can get around by himself, she said the answer is NO, then he will send someone out to evaluate him and give us pointers on how to get around better. Sounds like a good idea, if I can get B on board with that. It was a struggle just to get him to consider a shower bench! He's not ready to give PSP the upper hand, which I'm glad, but a little help might be nice.

As far as those brick walls go, instead of going under or over, I'm going to punch my way through. Might help me let go of some frustration!!

Lynn

[shasha]

WONDERFUL PIECE DEAR JIMBO ,. THANK YOU FOR STILL CARING ABOUT US ALL

XXX

[abicat]

My Dad was told yesterday that he probably has PSP. Reading this while trying to understand what PSP is has been so helpful. Thank you. I shall be sharing it with my family to help them understand the road ahead, as best we can.

[jimandsharynp in reply to abicat]

abicat, Glad to be of help. Just keep in mind that PSP is not a one-size-fits-all disease. That is what makes it so difficult. I have a whole list of symptoms my dear wife Sharyn did NOT have but others certainly did. One other word of advice. Don't worry about what "stage" your Dad is in. It just doesn't matter. Even if you know the stage you can't change the progress. The progress may change speeds and does in some patients. Also a PSP patient can get aspiration pneumonia in stage ! (the first stage) and die. There are no set patterns in PSP except decline of the patient (fast or slow). Instead of worrying about stages that don't mean a thing concentrate on loving your dad even more than you ever thought you could or would. Some ask "What symptom is next?" and the answer is always the same "Depends on the patient, there are no set patterns". "My dad has these symptoms, (list) what stage is he in?" Answer is no one can tell for CERTAIN they can only speculate or give and answer based on their experiences which may not be equal to your dad's. Just take one day at a time and try not to get hung up in that kind of stuff. As I said, you can't change anything. PSP is, for the most part, in control. Oh you can ease some symptoms but that doesn't change the course PSP is on it just improves the path for the patient. End of soapbox. lol Jimbo

[chacha1]

Those struggling with care - don't crack like we did and reach crisis point. Try Grace Consulting (care advice) or Eldercare.co.uk for care financial advice in UK. Try local carers associations (berkshire carers association is great - lobbying and really trying to help carers). Push your social workers non stop (recognising they are stuggling too with limited options and budget). I just wish I'd known all this much earlier... My Dad is finally in care but now the financial issues start - so the stress continues in other ways (nobody prepares you that you share your money in retirement between husband and wife -- unless one of you needs care - then even if state funded a bit they still take nearly all your pension - state pension and half of private pension to fund care and leave your spouse with nothing to live on and all the bills to pay - as if it's not stressful enough dealing with PSP.. Rocky road - one day at a time though and don't compare. I agree with you Jimbo - sometimes you spend so much time trying to second guess what's round the next corner that you forget to stop a little and at least enjoy the small moments on the way - and then you freak out because you panic about what's round the next corner. I know it's not the same for me as my Dad who is living with PSP but it changes us all - sometimes for the better - don't take anything for granted anyway! good luck all! T

[jimandsharynp]

chacha!, Well said. Sorry for the financial woes your family has to endure. Hugs, Jimbo

[goldcap]

Oh Jimbo, such a wonderful analogy. Thank you so much for sharing.

Goldcap

[jimandsharynp in reply to goldcap]

Thanks, much appreciated. Hang in there!! Hugs!!

[Hidden]

That was beautiful! Teàrs!