This is a post I have thought about making for a long time. After the illness both Larry and I had in March of 2015 I got more involved in his day to day care. He never got back to where he was before the illness. One thing I started to do was go to physical and speech therapy with him. Watching him interact with his therapists I saw he would do so much then not do anything further unless asked to do it. This wasn’t once in a while it was consistently. At one physical therapy session his therapist turned to me and told me I had the patients of a saint. Larry would give 90% on a good day and that was it. Four years later nothing has improved. He’s only gotten worse. It is so maddening at times. One of my favorites is him trying to eat or drink something. He gets his hand nearly to his mouth then stops. Somehow it’s suppose to magically make it the last inch or two on its own. When I push it he gets annoyed with me. I do an eye roll and go on.
Mr. 90%: This is a post I have thought about... - PSP Association
Mr. 90%
I got frustrated with my love too! He seemed to be completely unaware he had not put spoon or cup into mouth for 5 mins sometimes. I got that same glare!!
It is as if the brain has not registered the movement is not finished. Like someone switched him off in mid-operation!
So sad, it so frustrating!
Hugs
Jen xxx
Sorry Jeff, but we all have earnt that Tee-shirt! Not one of my better memories, the frustration, anger then the sadness and the guilt creep in. No suggestions, just a big hug, 'cause I know what you are going through.
Lots of love
Anne
Agree with Anne. Jeff you are doing a wonderful job. Yvonne xxxx
Some days are better than others. Being able to read other people’s story’s on this site makes a difference.
I wonder what would happen if you put a mirror in front of him while he eats? Would he be able to see himself at all, and if so, would he try to feed the mirror? Or, would he see himself stop and then continue rather than have you push the food in? It might be an interesting experiment 🤷♀️
Xoxo from I SewBears
At this point his head is back while eating. He would be able to see himself.
That situation is the one I beat myself up about the most. I have zero patience in life, and to be faced with that situation tended to push me over the edge into shouting after the first few minutes. When meal times stretched well over an hour I would be going nuts by the end of it.
I’m so, sorry that David took the brunt of my temper ALL the time, I struggle so much to be a carer, but it’s not like there is another choice. I regret the shouting so much.
You do such an amazing job, with so much more patience and ability than ai ever managed. He is lucky to have you there. Keep going for him, I know you will, and believe me, along with so many others on here, I know just how hard it is for you.
As the years go by and my sleep deprivation goes up I am getting more cranky myself. I have to take a deep breath and let things pass. Most of the time I manage. Not always.
Jeff, Are you getting any time off from caring for Larry? Do you have any help at all? If not, it sounds like it may be time to get a little help in. You need breaks too. I can remember our PCP asking me about how much help I had at every visit and telling me I needed more. I hope you are taking care of yourself too. It's really important as the care giving gets harder as you go along. It sounds like you are doing a wonderful job and keeping your sense of humor which isn't always easy.
Hugs,
Pat
I am in my fourth year as a carer and still scream and yell at times.
And YES I am very ashamed of myself for she is such a sweet thing.
Would you believe that I have developed the "Mother-Baby syndrome"?
One night I had taken a sleeping pill. But at 2 am She called my name and I virtually sleepwalked to her aid.
Her bedroom door is only ajar and so is mine, also our rooms are about 12 meters apart!
Weird huh😊
One of the physical therapists we had gave me a baby monitor she had used for her mother-in-law. I plugged it in about a month ago knowing it would be harder to hear him with the windows open at night. So far it has worked out well. His project is terrible unless he knows he has to scream for me.
You have incredible patience. I go and feed John his lunch every day. We use a teaspoon as he does not open his mouth very far and sometimes he just grips the spoon tight. Now on puréed food it does not take so long to feed him. Just continue doing your brilliant job xx
Larry is still able to eat most everything I give him. Lots of things have gotten eliminated. Everything has to be chopped up. It’s a good thing I have a large enough repertoire to draw on to make meals. I am feeding him small bites to help minimize the choking.
My husband was the same. No exercise at home or speech therapy only when the therapist was there. He has now gone into permanent care as I couldn’t manage him at home anymore. My 3 step children came up from interstate for the weekend while I was away on a break with my daughter and he put on a real show for them. Of course they have gone back home saying he shouldn’t be in there!! They are trying to pressure me to take him back to Sydney where they live then they can go and visit him often....but will they? Do I uproot my home and leave my friends and church to appease them?
That sounds familiar. When my brother and his family would visit from out of town he would try really hard to pull it together, poor guy. But when it was mom and me it would go back to his usual. No blame on this, I can understand why he would put so much energy into trying to act normal, or even just not falling, because he didn’t see them often, and he wanted to spend time with the grandkids when they were there. However, my brother listened to mom and me and believed us so he supported us on dad’s move into assisted living.
Mom sure needed her home and friends and activities (and her own healthcare providers, etc) during that time. Had she moved her and dad to be nearer my brother she would have suffered badly, especially after dad died.
I would highly recommend digging in your heels here and staying put. You need your support network, and moving would be disruptive to your health and his. You’re doing the best you can for him, which includes the care home, but you need your home and friends and church and familiar stores, doctors, neighbourhood, etc to be there as things progress further.
Thank you for your advice.
It always amazed me how my husband would 'muster up' when there was someone he wanted to impress, any therapist, our daughter who wasn't there much. . . . . .then go right back to not trying/doing whatever he had just done while they were there. I remember how frustrating that was. It is very hard not to be cranky when this happens. Thankfully, we had long term care insurance which allowed my husband to go into assisted living when I could no longer care for him at home. We were both better off when I finally made that decision. No one can imagine what this kind of care involves unless they've done it. If you're satisfied with the care he is getting, I would stick to my guns and stay where you are. Your life is important too.
Pat
Thank you Pat. How long was he in assisted living for? I am getting different time frames. One says he could go on for years and others say months.
He was in assisted living just short of two years. When he entered, he was no longer able to walk and transferring was difficult. We had been using a stand assist device at home which was a lifesaver. They continued using that for about a year until his left leg contracted so much that he wasn't able to put weight on it. He, then, required two person transfer. We were able to keep him in assisted living because he was in hospice and hospice helped with any medical issues that arose. I think we were lucky that the home my husband was in was willing to take care of him until he passed in May. It was a small facility with 6 patients and 2 caregivers. The family that owned it had 8 other homes like it. They were very hands-on and I feel very lucky to have found them. They became like an extended family.
Larry use to “cram” when he had a therapy session soon. Suddenly he had to practice a day or two before the session to be able to say that he was doing the exercises. Once it was over he went back to doing nothing.
Stay where you are. This is as much about your needs as it is about your husband’s needs. I wouldn’t uproot myself to make the kids feel better.
Thank you for you advise and support
Just about everything posted here today is familiar to me. Thanks to all of you for sharing; it is comforting to know there are others going through the same ordeals. Hugs all around, dear people.❤️
I’m so glad you posted. I too lost my temper at times and, oh the guilt, I loved him so. And it seemed to happen more when we were alone. You are doing a wonderful and thankless task, from your heart. I admire you. My husband, Bear died after 2 years 4 months after diagnosis. I wish he had stayed longer so I could apologize for the sometimes snappiness of me. Miss him every day.
I'm in the same boat as you Jeff. All good when with speech and physio therapists and agreeing to do exercises, but once home it's no thank you until 1 or 2 days before next appointment. When it came to mealtimes and W was feeding himself, there was more on him than in him, so now I feed him and thankfully he doesn't mind. Unfortunately I don't seem to have the same amount of patience as you and have had quite a few shouting matches, especially when I've not had much sleep, then afterwards I feel so guilty. It helps when I read that others going through the same and it's just not me being a horrible b..
Just keep rolling those eyes 👀 Lots of love Nanny857x
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