I've read some of the earlier posts on this topic, but still felt the need to speak. I'm caring for Steve (64) who is about 6 years into a very slow progressing PSP. In the last 3-4 months he has been increasingly saying mean things to me. I notice it most when we've had company or are visiting family, and ive decided he just doesn't want me to show attention to anyone else, much like our pre-school grandchild! I try really hard to walk away and say to myself "it's just the disease", but it's so hard when the man that used to love me so much can be so cruel. It doesn't do any good to lose my temper, although that does happen, but what can I do? I can't reason with him, it's like he's totally shut down emotionally. (One of his first symptoms 6 years ago was apathy, he was checked out emotionally and depressed.) it makes for sad days on top of everything else that's going on.
It's so hard some days to care for them, make their meals, clean up behind them, help him up and down, take him for walks, and on drives and trips, then be told I'm mean and do everything wrong, or that "he would never take care of me if the roles were reversed"!
We are headed to the Texas coast this weekend for time with our grown kids, I wish I was looking forward to it. He's determined to climb to the top of the only historic lighthouse in Texas that you can climb, and our daughter says she's taking him up !
Ok, so I feel better already that I shared this, rant over. I so much appreciate this community !
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Khartt
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I certainly understand the sting of your husband/patient - on whom you are spending so much time, energy, angst, effort... - "turning" on you. That happens with my hubby too. Things seem to go fine as long as everything is smooth: no downturns no sudden stresses or "lapses" in my attention to him, then Wham! one negative moment can get him saying something cutting. (...and that's something, given his lack of speech!!)
On a bad day I hit (verbally) back. On a good day, I ask him why he said that? and his response is often interesting. Some times he says "I don't know why I said that" sometimes I ask him if he thinks I'm being unfair. and so on - just to see if a conversation can come from it. Usually the situation reverses and he says he's just frustrated. Of course I understand that, and we make up ok. But LORD....it's so frustrating and hurtful and you just want to throw in the towel and say "Ok Buster - go see if life is better in a care home!" - But I promised myself early on I would Never use that as a goad. The power balance is so unfair - there is no balance! You can't have a "fight" the way a normal couple might from time to time, because there Is No Fair Fight when one partner has PSP/CBD.
So, I'm with you - it's bloody tough. Hope you get a chance for a deep breath, some moments away, and feel all the love coming to you from your friends here who understand
Hugs and warm thoughts headed your way. Sometimes ranting, crying or walking away is all we can do. It’s tough when you’re dealing with poor communication and apathy. We’re fighting a battle we can’t win.
Good luck on your trip to Texas . I hope you can enjoy it.
I'm lucky in that Ben has very rarely said nasty and hurtful things to me but I know it often happens with these diseases. It must be hard when you are giving your all and you are given these negative comments, must be so tempting to retaliate and say hurtful things back but where would that get you. I guess they say these things through the sheer frustration of being locked inside their own bodies and feel their independence slipping away. So hard for you and for them too, wicked diseases!
The 4R's is when we React, Retreat, Reflect, Regret!
The 3R's you Retreat, Reflect, React!
In other words, when your husband says these horrible things, mine did occassionally as well, step back, leave the room, remember he is only hitting out in frustration at you, because you are providing a safe loving environment that enables him to do so. It's a huge compliment really. Be proud of yourself, not hurt. Hey, if you only manage this once, it's better than not at all!!!!
I agree with what the others have said although my darling never said a nasty word to me. I did however, have several incidents where my eldest grown up son was determined to let his dad do what he wanted although I knew they would probably end in disaster. Our eldest lives furthest away and didn’t see the changes that were taking place and on the phone made impractical suggestions, especially when his dad could still speak and tell him what I was stopping him from doing. On one occasion, when we went to visit our son and he had ideas as to what we were going to do together, I decided I would let him see what his dad was like so asked him to take him to the toilet, making an excuse that my back hurt. Our son said he thought he could go by himself but I said he couldn’t as he’d fall over. It was a disaster. My son had to hold him up as C refused to sit down. I’ll leave you to imagine the state of the bathroom......which my son had to clean up. I felt mean as it must have been awful for C to have his son see him like that but it put an end to him telling me how I should give C more independence and he never told me how to do things again. I continued to have a backache (I really did but not as bad as I made out) and although I took C to the toilet after that, got my son to do much more for him. I suggest when you visit your daughter, if they both still want to climb the lighthouse, tell them it’s not a good idea, let them but you stay down the bottom and pray/ wish/ whatever but don’t try to stop them as you will be the ogre not letting him do what your husband wants. If they make it, brilliant but your daughter will see how hard it was. Incidentally, spiral staircases are the easiest to climb by those of limited mobility. We once stayed in an adapted holiday home, everything downstairs brilliant for the disabled. We lost my husband who could hardly walk and couldn’t climb stairs, and found him sitting looking out to sea. He had climbed the spiral staircase to the first floor.
It is a familiar rant, sometimes it feels like the person with the disease doesn’t appreciate any thing that is done for them or realizing that the spouse is also suffering from the disease. Not the same, but nevertheless devastating.
Let your daughter try to help him climb to the top of the lighthouse, but you stay on the ground. Perhaps a little understanding will occur to everyone that this caregiving is one tough job.
I can certainly relate to you being hurt by your husband’s nasty words and yes much as we like to be very patient and forgiving and keep reminding ourselves that it’s not them but PSP, we do need to rant and vent out once in a while so as NOT to explode!
Fortunately, my B never had any verbal attacks BUT he often grabs me and squeezes (painfully) hard any part of my body he was able to get hold of. It happens often when I’m talking to someone and he is not included in the conversation and if I’m NOT paying attention to him (As if we can) OR when he’s tired and frustrated with verbal prompts to do things.
What I found helpful (which I gathered from this forum, with thanks) is just hugging him and calming him down much like a cranky child. I’ve also learnt to pick my battles as I know I can’t win them all.
Yes, I agree with NannaB let your children take him out on their own and step back and watch. My stepson had a similar idea this weekend so I let him take my B for a walk (with a wheelchair) to the pub, so I can take a much needed nap. They were back in an hour in a taxi (btw the pub is a good 20-30 mins walk) with my stepson and his friend huffing n puffing and very thirsty and hungry!!!!!! B refuses to sit down and was hitting everything in his way with the wheelchair, was agitated with the crowd and noise, and wanted to go home! So there ends the conversation of letting him do what he used to do. My stepson said it was hard going and I just kept quiet letting him reflect on what it’s like being with my B, 24/7.
So may I suggest you let go and turn him over to your children for the day and take the rare opportunity to relax or catch up on much needed sleep.
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