Every exhale is a moan.

[Short1]

Hi There, I stumbled across this site while looking at Psp pages. I am always interested in hearing others stories about loved ones with Psp. Sometimes you just think its just you and them in this hard struggle. My husband Richard was diagnosed in 2007 at 52, when our four children were 17,15,12 and 9 years old. He has deteriorated so much and I am now deciding whether to keep trying to look after him at home. I have my family who are worried about my health. They also think I should put the children first (even though they are older now) as we are all becoming a bit tired of caring for him. He is in a wheelchair, can hardly speak, I have been peg feeding him for over 3 years, he is incontinent more lately and just this week has started leaning to the left when upright. He has trouble sleeping even with sleeping pill and a relaxant pill. Our main problem with him is his constant noise. Every exhale is a moan and we know he is very sick but it is starting to send us crazy. Sometimes it goes on all night and we sometimes react in a not so caring manner. The worse thing about this disease is that he knows exactly what is going on. I honestly wish he had dementia so he didn't. It is a cruel disease for all involved. Anyway I suppose my point is about guilty feelings and knowing when you have to change things in your life. My mind is in constant turmoil about it all and that is no good for my health either. How do you know what stage your loved one is and when it's time to call it for his sake and ours?

[Hidden]

Hello Short1

Sorry to hear of your dilemma with your husband. You'll find others on this forum have gone through or are still going through similar circumstances. I'm sure they'll relate their stories and try to encourage you in these difficult times.

From a very personal view, my wife has PSP with initial symptoms showing about 4-5 years ago. This forum has often discussed stages, but most of us find this a bit futile since it is an individualistic disease with different progression and severities in each sufferer. Look back at such discussions on this site.

I often wonder how I will cope in the future, but my wife wants to remain at home until the end, and I will endeavour (if I remain healthy) to care for her to make this happen. We have already put in place an advanced health directive (living will) and power of attorney. She does not want PEG feeding, nor any form of resucitation.

Everything you say about this disease is true, and the decision to keep him at home or find a nursing home type facility has to be a very difficult one. For myself, no matter how good the carers may be in such places, it's not the same as home (and as you say, PSP sufferers always know what is happening around them). This is not to say that many carers have to eventually use a care facility because of many valid reasons, and for them it is the right decision. It's such a very individual decision and it's not a matter of it being right or wrong. I do trust you will not feel guily whatever you decide. Your own health (and that of your family) is a very important consideration.

I do wish you well in your decisions and keep sharing with this forum!

[jillannf6]

hi short 1

i agree iwhr strelley above

get everything in place (esp healht direcitves/ power fo attorney etc etc) and what richards wishes are/arent.

you do need ot look after your own health and tha tof yoru children too

i do not have children so when i am no longe rable to do anyhting for myself shall haveto go into ahome fo some sort -,m partner find sit difficult anyway copign adn dealign iwht me

lol Jlll

[dorothy-thompson]

Dear Short1

I do agree with Strelley as a carer and, with jillanf6 as someone who has the condition.

But, as carer myself, yes, we do have to look to our own health and I so relate to what you say about being tired with it all, I feel very much the same. After nearly 50 years of being a wife, mother, grandmother and now 'carer', I want to scream, enough is enough!

Get all the help you can, do all that is humanly possible for one person to care for another, never feel guilty if you do decide on different care.

I say it so many times on this site, it is absolutely heartbreaking that the person knows what he or she has, knows that there is nothing that can be done, but still struggles on.

Stay stong, stay true to your beliefs and take care and keep on this site, it keeps you sane.

LOL

dorothy-thompson

[peterjones]

hi short 1 i am sorry to hear about your husband i can only add that no one could blame you its a hard time being a carer\\ i have psp myself and i know what is happening if you think its right then you do what you have to do there is no need to feel guilty about it at all\\\\i think your husband would think the same about you and hes family hes probably thinking how much longer can they carry on with me like this \\\\ its very hard situation but he would realise what you are going through im sure of it \\ please do not let your own healthy suffer or your childrens \\ i think when the time comes for me to move on i will understand it and i have been married for 58 years of course it will be hard but its no good ruining other peoples lives as well \\\\\life is for living like it or not we must all do what we have to do in the long run i hope this helps whatever you decide best wishes peter jones queensland australia psp sufferer

[riosenior]

Hi Short 1

I can fully appreciate your dilemma. My wife has had PSP since 2005 and probably longer, and I cared for her until 2012. As the disease progressed the burden on me , both physically and mentally, increased somewhat exponentially. We were supported at home with around 80 hours of professional care each week but even then it was a never ending struggle that was without doubt affecting my health and general wellbeing. Amongst all the problems of loss of mobility, loss of speech and the ability to communicate in any way, choking and swallowing difficultiesetc constant moaning with virtually every breath became a huge issue over which she had little or no control. This became even worse, if that was possible, when she had UTI's etc. I know exactly how you must feel and fully appreciate the difficulties it gives you -- its a bit like "a dripping tap" , never ending and affecting one's ability to care and function rationally

I had all sorts of doubts, feelings of guillt etc about moving my wife to a Nursing Home particularly when she had always indicated that she wanted to stay at home for the duration.

Eventually, after a series of UTI's, when she was very poorly & could not, drink, take her medication or eat she accepted that a Nursing Home was the only sensible option,

So 12 months ago, after a deal of research, I found a home that I thought would provide the level of care that she needed, they had had experince of PSP with another resident in the past. Luckily I was right in my choice. She is so well cared for by the care staff and professional nurses are on duty 24/7 to cope with medical issues etc. Her PSP has also progressed further with time and again made me realise that she is in the best place, and getting the best care -- a place that can meet her needs as she worsens.

The impact on me has been significant -- I have been relieved of the constant caring task and can now enjoy my old hobbies, golf, gardening DIY that i had put on the back burner for so long and as a result feel much healthier.

I still feel guilty at times that I could not manage to keep her at home but on reflection I once again realise that the benefits for us both, far outweigh the disadvantages.

Only you can determine when the time is right, but when you start to question your ability to cope, start to think about Care homes, worry about your own health etc then from my experience I believe the time is right.

Good luck

[Hidden]

Mum only moaned whenever she needed to take a deeper breath out and it always raised comments as she sounded so fed up. But it must be awful listening to it all the time. I had to get mum into care as it was all falling to me and I nearly had a breakdown before I got carers coming in. But when it got to a point where mum couldn't be left alone even for short periods I had to give in and get her into full time care. Mum was happier, I was happier and although I still spent all my spare time in the home with her I could have some respite knowing she was in very good hands. It also gave us back our mother/daughter relationship as I wasn't having to struggle with all her personal care by myself. Mum was 5ft 10 and would fall very heavily almost straight and it was easy for her to hit a wall from the centre of a room so it was all very dangerous and she was much safer where she was. Instead of being up to my eyes in washing and changing mum I was able to sit with her and have quality time and it gave her more chance to talk when she could and say how she was and let me know what she wanted.I would love to have had her at home but I know I would have ended up ill myself. I know I did my very best for her and mum said this to me too. Planning ahead made it easier for everyone and the staff were very keen to understand mum's condition so make sure you supply as much information as you can for a care home if you do take that path. Also don't be afraid to send information to the GP if you need to change surgery as they don't have time to be looking it all up.A practice manager on your side can make all the difference.

Being younger your husband could well go on for a long time yet but like I was able to you will be able to visit and take him out and enjoy each other's company as much as you are now but without the military operation that it entails at the moment. You will be able to ask to pick him up at a certain time and he will be ready.Do visit any home you are considering and even try a few days to see how it works. We did this with mum and it made a huge difference to when she went in for good.

Good luck and we are all with you,

Dianne x

[CyndyLouBlue]

My dear MIL, who passed just a week ago, had the constant moaning sound when she breathed out. Once we were assured, by both the doctors and by her, that she was not in distress but only breathing we came to be able to largely just ignore it. It is very hard when it first starts happening. I guess she went on like that for nearly 18 months before her passing. She had many of the symptoms of your loved one. You don't say where you live. We are in the UK and were lucky enough to be in a county with great care. She had a dedicated care team that came to her home 6 times a day and a carer over night because of her chocking risk. We still went to visit and be with her 4-5 times a week when we could but the care team made life for all of us possible. For all of us a care home was not a possibility as there were no facilities that could offer what she needed and she received much better care at home and was lucky enough to be able to die in her own home with us there to be with her. Each case is so different and you really just have to take each day as it comes and do your best. We were in a constant worry about if we were doing enough, etc. but now I can look back and say we did our best. You can't do more. It has to be one of the most evil diseases on the planet. Don't beat yourself up. Find a way to give yourself breaks when you can. We came to feel that Mum appreciated a break from us worrying over her all the while as well. Good luck and keep checking in here. The support is such a help.

[Short1]

Hi again, Thank you all so much for kind and helpful comments. It is great to know about others in this situation. We are in Australia and there is a fair bit of support. I do get a carer in two days a week for 5 hours and I put him in a nursing home for 2 seperate weeks a year. I suppose my main problem is not wanting the kids to end up hating their Dad because of his constant noises. It's not only moaning but constant coughing and phlegm gargling as well. Husbands breath is also terrible and a trip in the car is a nightmare even though he mouth swabs beforehand. It must be terrible for him to be like this. I am torn between trying to keep everyone happy. Husband decided not to be home till the end and not to be resuscitated but I have no advance directive of this. I do have enduring guardianship and power of attorney. I'm feeling as though I know what to do but I am letting others expectations of me to rule. I will keep reading and getting advice from you all so Thankyou again.

[annielee1]

I definitely understand your delimma. My husband has been mostly bedridden for the past year. I still work & do have a neighbor that comes & stays with him while I am gone. I went looking for a really good care facility for him a couple of months ago because of the stress it has put on me. He does not have a feeding tube & I hand feed him every night. He gets so bored & wants to go somewhere on the weekends but we have 2 acres to take care of & that is the time i have to do so, but i do try to get him out of the house some. I did find an assisted living house which was really like a nursing home but in a house atmosphere. It was a very pretty house with a gazebo & patio. I put a downpayment on a private room but by the time I got home I just couldn't do it so I called & cancelled.. But I did find out that they also do respite care. So I think this will be good. The times I need some time away or a short vacation I will take him there & then over time maybe he will get used to it & if the time comes when I can't take care of him on my own, I can take him there & it won't seem so strange. When he was first diagnosed with this horrible disease I asked the doctor if he needed to go into a nursing home. That I had a lot of conflicts about it & he said that in his experience with patients & their family that the ones that used their hearts & heads to make that decision were the ones most satisfied with their decision. Hope this helps.

annielee

[carolinesimmons]

Hi Short1 (if that is literal I must be Tall1!),

It took my breath away to read the ages of your children knowing that my daughter who is not caring for anyone has kids the same age. She is CONSTANTLY on the go with all the activities they are involved with. Fortunately, I am the caregiver and my husband who has PSP is not her father. Surely no one would say a word against you whatever decisions you have to make. If they should dare, try to ignore them and do what you must. I am in the U.S. and our caring system is not nearly so well-developed as those in the UK. We all do what we must.

Caroline

[SharonAB]

Dear ShortI,

My husband has PSP and we have a 10 year daughter. I notice you use the respite services for only two weeks a year. It is what I used to do (and at the time in my mind felt guilty for placing him there for that length of time). In hindsight (yes - it is a wonderful thing!) I would have booked the services for six weeks a year.

I've also since found out I could have requested six weeks a year with no questions asked under DSC/Centrelink guidelines.

Anyway the more important reason I would have extended the time is to grant my daughter and I some 'real' time together to talk about our lives in detail during school holidays (Bear in mind - I am talking as a parent with only one child, with no other children to exhange thoughts, ideas etc so perhaps not pertinent to you?). Our daughter has taken a lot mentally on board than I was unaware of (or perhaps chose to ignore) at the time, and it is only now that she is talking (and screaming) about how if other people had looked after her Dadda than she would have been able to talk to me about things more. (so far she is hating the disease and not her father, but tells me of her dreams (or nightmares) and hates in life so we are walking a very fine line.

Ironically John now stays in respite six weeks a year in one and two week blocks (Strange things happen - he now also lives with his elderly mother (& John receives DSC - Individual 'family' funding for support services).

N.B. For your own health - If you haven't done so ..take a leaf out of my book ... I went to my GP a couple of weeks ago to see him about me - a rarity. Told him I was exhausted and very tired and wished to have a medicare referral to start seeing a cousellor for me (another first). He said - 'Not surprised - what took you so long'........So to start off with I've had blood tests for general physical wellbeing .... next..... the journey continues...

Regards,

Alana - Western Australia

[Short1]

Thanks so much for your comments. They were all really helpful to me. Im pretty sure my kids hate the disease and not their Dad but stuff just comes out the wrong way sometimes. I have thought to start using respite more often. Of course I feel bad just abandoning him (my guilty thoughts again) but the more we do it we will hopefully get used to it a bit more. There is always the feeling that something will happen when we are'nt with him. As I write we are getting ready to take Richard to a nursing home so we can spend a week at my sisters farm 5 hours away. Once there we have a lovely time knowing hubby is safe and well looked after. Our daughter is planning to drive as she is 21 but still on her L's as I just cant take her out all the time to get the hours up. Our son 18 will want to drive too as he is next in line with his L's but things cant happen as fast all their friends and they are missing out that way. Better late than never I say. Thanks all.