frustratrion and anger

my husband was diagnosed in 2007 with psp and is now in a nursing home he still tries to keep his indendence and will get annoyed at the staff who want to help him, is this normal for psp he also reads large print books but his eyes blur and another reason for frustration will this increase with the disease, I feel unable to visit as much as I did because I can't take the abuse any more.jo

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  • Dear Ronh

    This is all very familiar and my husband is at home! He was diagnosed in 2010 but he has had PSP since 2006 in reality

    I can bearly cope, we are both 72 years old and I keep trying to make my husband understand that there is only one of me but it is pointless, he cannot understand, poor devil. We do get care for 11 hours a week but most of the time it is a "sitting-service. I am not knocking it, at least it enables me to do the mundanes things of life like shopping and I do get to see friends sometimes. I could get more hours but perversely, I am resisting having yet another person in the house, but I know I will have to accept it eventually as I am finding it impossible to move my husband physically to shower him etc.

    Also, as my husband can be very restless and even wander at night, I find I am on "duty", on my own, for over 15 hours a day.

    dorothy-thompson

  • Hi, if your husband struggles to sleep at night then I suggest a sleeping tablet. We used a very low dose seroquel tablet and it helped my mum sleep at night. Although we had to give it immediately before bedtime, because it knocks them out very quickly and then you cannot move them. Also you should have more help. It cannot be easy dealing with this on your own.

  • i agree :)

  • Dear Dorothy, i know what your going through as we are there too! just been given a hoist to help with transfers and bed times, this disease is the worst, but i am surprise your coping at all, my back and bones gave way years ago, i have thyroid to content with now as well and no family help. You on the other hand are "72" my god how do you manage I'm only 53. Please think carefully about the damage it is doing to you, talk to a Parkinson nurse or coordinator, take any and all help and discuss nursing homes, no mater what you think your hubby will think no less of you! and he deserves top care and so do you! It's hard i know i will have to do the same , take the giant step.. they may be places you could both stay at together if you want. (find out) my thoughts are with you nothing worth doing is easy?

  • Mummybear, I'm 78 and dealing with a wife who has PSP. Fortunately my health is excellent at this point. No meds or health issues. PSP is moving slowly in my wife at this time. She is only 66. My concern is that she will decline over say eleven years which I would be 89 and who knows how my health would be or if I could continue to deal with the issues of PSP. Just venting a bit. Thanks for allowing me that favor.

    jimandsharynp

  • About the night wandering. My first wife died of CJD (Cruetzfelt-Jacob disease) another rare brain virus. There is something called a "sundown syndrome" that some diseases go through. For some unexplained reason the patient gets active in the evening/night. I started getting a sedative into my wife just before bedtime which worked with the problem. Later she became unable to walk so it wasn't a problem. I'm not sure if the "sundown syndrome" takes place with PSP. That is a very interesting question and hopefully someone on this site has an answer.

    jimandsharynp

  • Dorothy, get more help and get it soon. This illness does not get easier and the pressure on you will increase. There will be no let up for you on your own.

    You should be getting help with carers who can shower and dress your husband, and not just "sitters".

    Recognizing my limits saved me, and the knock-on effect was better for my husband and for self.

    And with PSP, and at the age of 72, there is nothing wrong with a sleeping pill. He takes the pill --- and you will get a bit of rest.

    You need all the help you can get,

    go for it Dorothy, go for it.

  • dorothy-thompson

    He will not take tablets, of any kind, he is not on any medication.

    Can I ask, how did you get your husband into a nursing home, do you get NHS continuing care funding?

    dorthy-thompson

  • Hello Dorthy. I live in Australia, My husband had so many falls being independant that the ambulance was often called out, He has had many stitches in various parts of his head from falls and the last one the ambulance man informed him it wasn't his choice he was going to hospital. From there they went through his medication his mobility and tested his skills on many fronts, The deciding factor was mine as I met with all the medical staff who had looked after him in the hospital, like you I could not take any more so I agreed after 3 weeks in hospital he was moved to a nursing home of my choice, His pension covers the cost as one pays for all medical here but is subsidised by the Federal Government. I also have Power of Attorney and Enduring Guardianship over him. But I must admit that is still wearing he may not be at home but is still demanding rude and aggressive, but at least I can walk away. Not sure if any of this helps you Dorthy but really if he took the medication it would help.

  • Hello Ronh,

    I realized I had hit the wall after caring for my husband before I went to work and after getting home. I was running around at midnight "fixing pillows" and when I reminded him I have to be up at 5.15am to see to him before I went to work his answer was that I "should get up earlier". That put my world into perspective.

    He is now in a home and his pension and my wage (I'm 64) go to his care, but this has saved my mental and physical help and gives me the strength to cope, this benefits my husband too.

    (I'm in NZ).

  • Dorothy, I had to resort to placing the crushed up tablets in evening deserts or treats like brownies, cake or pudding for my first wife who died of CJD. It worked in spite of her not wanting to take any medications.

  • Hi Ronh, Yes your hubby may be like this for a while longer i'm afraid, but visit him as much as you wish too. I have found that you have to treat the patient like a child whom cant grasp the meaning of what your saying one day but the next they may be able too, my hubby has a few times said nasty things, and i would say that that wasn't nice and i didn't deserve what they said, but know they didn't mean it and that it is the disease.

    Even though it hurts just try having a cuppa there when you visit and stay as long as you like until he abuses you then leave. Soon enough he may not be able to talk and you may wish to hear him no matter what he says? Keep you chin up, we all feel guilty and PSP is the culprit. take care.

  • my husband has been in nursing care home for 18 months, i am lucky enough to visit every day. he is wheelchair bound, speech practically nil. He was transferred straight from hospital to the home.My time spent with him each day is "quality" I talk non stop, about the news, family etc. He cannot read now but is happy to hold my hand.

    social services arranged everything for us, PSP has many stages and I never take for granted how he will be on my daily visit. - complicated and unpredictable this is the mantra!! so far we do not have continuing care paid but nursing allowance that goes towards his fees. I get upset that he cannot converse with the other residents but the staff always have time for a word or two for him. Not a perfect answer, but then it is the best for us in the non perfect world. I hope the behaviour pattern of your hubby will change for you and that you will find a contentment with each other.

    x

  • It was a long winding path for mum as she went from her beloved 3 bedroom house to sheltered housing to residential home to nursing floor but she would never have done any of that until she had no option due to the dangerous falls she was having every time we left the room. Now Mum has her moments where she is fiercely independent and only allowed people to feed her when she had a UTI and lost her ability to pick up food. However once she got her hands moving again a month later she was insistent on trying to 'do it herself'. She makes the odd sarcastic comment or tells me to leave her to do it and I realise it is just her strong character. It hurt at first and I was dreading it getting worse but it hasn't and only rears once in a while now. I genrally let her have a good go at things and then just sort of 'help' her hand if it is not moving by itself and she doesn't seem to mind that too much. Mum has a few moments every day when she can speak and the carers know now so they wait for her response but initially I had to keep telling them to ask and wait. She has them in stitches with her sarcasm and witty remarks even though they happen only perhaps once every day or two.

    I wish you all the best.

  • Myofascial pain

    Here is a recipe from the "Book of Stewing." The meat for the recipe is, "I must be accepted and appreciated by everyone for everything I do." Mix it with the batter of, "You must always support me and put me above everyone and everything else. Spoil me without expecting anything from me in return." Sprinkle it with a seasoning of, "All circumstances must be exactly the way I want them and if they are not, my life is terrible, you're terrible, and this place is terrible." These three ingredients, when mixed, will automatically turn on the "pressure cooker." Stew and seethe it all day long. Note that stewing and seething will be often accompanied by "internal fire-works" that will heat the produce to a "raging" temperature : A kitchen where this recipe is cooked drives everyone away except the Chef. Later, the heat gets unbearable even for the Chef.

    The name of this recipe is "Low Frustration Tolerance (LFT)." People who use this recipe as their staple diet stay mad with themselves, others, and the world: Why? Because, no one can always be accepted or appreciated. No one can always agree with us or approve everything we do . Circumstances don't always favor us. Events do turn out to be opposite of what we anticipate, at one time or the another. I don't know if it's the same case with you, but in my case, the Universe always forgets to consult me about my preferences. We don't have to like everything that happens to us, but we can accept it. Looking at the big picture helps us to accept a lot of things that are difficult to swallow or hard to digest. We don't achieve big successes unless we fail a few times, muscles can't be strengthened if we do not exercise them against resistance, and we don't heal without experiencing the pain. "To heal it, you have to feel it."

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