Hi anyone had to deal with their LO having a very negative attitude towards everything and anything, constantly moaning about carers, the news on tv, noise, sun, how many pills he has to take, just virtually anything that comes up.
Just wondering how as a carer you dealt with it in your own mind, without it bringing you down, and feeling your not doing enough.
He is already on anti depressants and diazepam.
I keep asking if he could possibly try to think a bit more positive, but that didn’t seem to work.
Any suggestions welcome.
Love and hugs
Helen xxx
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Helen119
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Your description did sound a bit like my mother. She is in a memory care unit and everytime I call her, she complains about the understaffing of "this place." How she had to wait for someone or they didn't bath her correctly or something else related to where she lives.
I usually try and shift the subject by telling her it's a hard job and I'm sure everyone is doing the best they can. Redirecting the conversation to something else is my only go to tactic at this point. It does get frustrating listening to the complaining.
PSP is a cruel disease. The low mood, paranoia and aggression my husband suffers has been a challenge. Distraction works for us though sadly even if my husband appears to enjoy himself he can never remember pleasure. I try to have a coffee and time with friends for some light relief and keep my sanity!! Is there a local Hospice day care u it he could go to??
My hubby has been on antidepressants - 3 different sorts over the years without any improvement but started on antiPsychotic meds in December these have made the biggest difference, He now smiles occasionally and can even laugh though not always appropriately!!! He asked me at beginning of February how I was after we had both fallen over - nearly fell over again. He has shown no care, love compassion in years. So AntiPsychotic maybe helpful.
It's the disease doing the behavior NOT YOUR LOVED ONE. PSP creates changes in the brain. The problem is that we remember our loved one as they were before PSP came calling and think this is the same person.....same body right? Well, NO. Both the brain and as I remember my son's body began to change: he couldn't see as well (if at all), he drooled, he had a seizure, He had compulsive behavior, he couldn't feed himself, he coudn't get up from a chair or walk without assistance, his speech became gibberish. None of the changes was my son doing purposely. I'm sure if he could, if he knew, he would have gone back to being his healthy self.
It's difficult for those of us who dearly love our PSP LO, and also are the caretaker.
Rant and rave, scream, YELL It's not fair, ask for suggestions on this site, but understand IT'S ALL THE DISEASE of PSP.... all those symptoms I saw in my son and I reminded myself, It's the disease of PSP, not the healthy son before PSP.
Mom, of 55 year old son who lost his battle with PSP May 4, 2019.
It's hard dealing with this and it can wear you down. Try and take some time out for yourself, meet up with a friend for coffee or have them come over to you. But always remember you are doing the most difficult job the best you can and you can't do more than that. Lots of love Nanny857xx
My husband had terrible apathy, didn't care about a thing. For a very motivated and positive man, this was very hard to take. Slowly though, I began to realise that apathy was his friend (my enemy!) it made the journey a lot less stressful for him. What can you do? Get more help, get out, meet up with friends, anything for a bit of light relief. As others have said, it's PSP, not him. My heart goes out to you. Your post has bought back many memories, perhaps if you are feeling down, it's time to go on the happy pills yourself. Help comes in many forms, you just have to grab each one you can!
Thank you Heady pills for me maybe worth thinking about xxx
Helen it is hard and there are no easy answers. One thing that helped me was to learn to bite my tongue, smile a little and then say "l know you are handling this better than l would." Which l do believe was true.
PSP has a personality... and it is not the same as your loved one... l believe that was the hardest thing for me to learn in the beginning. Sending gentle hugs... Granni B
Yes yes and yes Helen I can’t remember how long for it’s just been going on for years
The anti depressants did not work for my husband nothing does so I guess it’s just the same old same old what can we do ? It’s very depressing to be around hun I know sometimes I just want to run what with that and the sleeping all the time what a Terrible desease
this is and here we are all on our own
No cure nothing works just pace the bloody thing out and wait for a cure no one seems interested do they ?
But we didn’t think it would happen to us either did we ?
I hear that Canibus oil is good for moods ? Just saying hun
It’s very difficult to stay positive. I will acknowledge what is being said by repeating his words back to him. Then I turn on some music to change the topic. Music puts me in a better mood and prevents me from going down a depressing spiral with him.
Now that the weather is improving I will ask hubby to sit on the patio with me and breathe in some fresh air. That will “sometimes” shift his mood. Not always.
Thank you sewbears yes it’s tough, tried most things, Colin is at ending stage, totally bed ridden can’t move arms legs or head, can still talk and see and swallow, sonhoping the suffering doesn’t go on too long xx love and hugs to you too xx
I really like Granny B’s reply “I know you are handling this better than I would”.
I’m so sorry that your LO is at the ending stage now. It’s a double edged sword for sure. You want the suffering to end but you don’t want him to go. Then there are times when you think you’ll feel relief once he’s gone and you don’t like thinking about what will happen after. I think my hubby is at the beginning or maybe middle stage and I worry that I won’t last as long as he will. It’s so very heartbreaking.
Do you have any help? Access to hospice? Hopefully you aren’t alone during this difficult time.
Yes I have hospice involved in fact he was only there last week for respite for a week, I have carers coming in 2 times a day and I have family around locally.
Does he like music? We're not end stage but he is in a chair most of the day and has battled depression and apathy now for several years. Lately we've been playing a Lot of music! I ordered a Bluetooth speaker and we've been blasting it out lol. He always enjoyed music before, at least this lightens the mood. My next move is a set of Bluetooth headphones he can wear in his chair..
I'm sorry you are having to go through this. I know how hard it is when it seems to go on and on.
I do understand as my Mum is not rational anymore and it does not matter how much you try to see her make sense and reason with her once she gets a thought process into her head that is that and there is nothing to pacify her or calm her down it is extremely wearing and my Dad and I who are her soul carers feel exhausted mentally and physically with it all. We end up getting angry with her and frustrated as well as very down about the whole situation. She then gets more agitated and cries and it is very distressing she has a sound mind but her words do not always come so well now and she cannot do a thing for herself she is totally bed and chair mound and we use hoists all her food is blended and she only eats one meal a day and has lost over three stone in weight now. MumDad and I feel,so alone with it all. Her demands are never ending all the day long.
Hi Amalfi45, I’m understanding where you are at, as I too seem to be going through similar stage, it’s very wearing and frustrating. My LO is constantly demanding all day and I am primary carer, so I get very tired and feel like you alone sometimes.
Have you been in touch with a hospice so maybe you and your Dad can have some respite, I am assuming you have carers coming in to help with washing dressing etc,
I have no answers but just seek all the help you can get, love and hugs to you and your Dad xxxx
Hubby and I had a rough morning. One minute we were smiling at each other and the next minute he was angry because he wanted desperately to tell me something that I just couldn’t understand or grasp. Our game of charades took an ugly downward turn and for a short time I felt abused.
I left him in the room to sulk while I dressed my two small dogs with their harnesses and leashes. I huffed out the door and ventured around the block, stopping along the way to pickup doggie presents. Yuck! Anyway, when we returned home, about ten minutes later, I had cooled down. I looked at the old man that I married and the person that I love with all of my heart, whom I’d left by himself to sulk and I said... Seriously, I said this... and I don’t know where the words came from... “We’re going to be dead a long time, let’s not argue and let’s make the best of the time that we have left”. Next, I put him in his chair and wheeled him around the same block where I had just been with the dogs.
I feel better sharing this story and my frustration. I hope it makes sense and that this “negative” title is a good place to put this. I don’t even know if there’s a message here but seriously... “we’re going to be dead a long time”.
Well done. This will comfort you when you are on your own. I remember similar scenes and always find comfort from the times I managed to rescue the situation. Not always !!
It's only after its all over that you really appreciate how tiring and stressful it is.
I echo Jean's comments Sewbears: Some of the most comforting memories I have are of the times when I "recovered" from one of those impossible 'spats'. Impossible because there's no fair fight when your loved one can't communicate easily, and can't process well cognitively - and is stuck with so much deep disappointment and anger...yet you're human and not a saint!! The times I was able to turn it around (later) and use it as an opportunity to tell him how much I loved him and how unfair it was, and how I'd do anything to make it better if I only could, are now a great balm to me. No real "fights" no divorce, even though you hardly recognize him any more - just the strongest test of love you never could have expected.
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