PSP Association
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My mother has PSP and is about 2-3yrs in. She is in Assisted living as her body is failing before her mind. She is starting to get very childlike, and very mean towards me.

I am struggling with keeping compassion in the face of feeling abused and used. She is angry that assisted living calls me in regards to her care.

She wants me to give up my life to be her caretaker so that she does not need to pay for assisted living.

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What you describe is a very difficult situation, and I feel for you. It's hard to keep recalling that it's the disease that is doing this, and that this is a phase that will pass. Agree with what you can, then deflect and distract, but don't engage. Remove yourself as necessary. Take care of yourself. Peace, ec

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i AGREE EC

;LOL JILL

XXXX

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Hi, Jill! It always makes me smile to see your picture pop up, smiling back at me. Love, Ec

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Don't like hijacking someone post bu, Hey Jill how are you doing, nice to see you on line

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Dear Kim, That is a very tough situation. It is hard enough looking after loved ones who have become physically dependent, may be depressed and bitter or angry, but then to have them direct it toward you is unbearable. As Sarah said, it is the disease not your Mom, doing that.

Hopefully the support she gets in Assisted Living frees you to spend quality time with her when you can. If you had to look after her at home it would very possibly impair your work life, your health and your relationship with your mother. Trust that you've made the best decisions for her care and concentrate on giving love when you can, then remove yourself.

Good luck and hugs your way :-)

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Hi Kim

I have been (and to some degree still am) at the receiving end of one like this.

If she is abusing you now imagine the potential were you to be the full time carer.

Full time care is exceptionally tough. Later the getting up in the night will erode your sleep and adding the day care into that one can quickly become someone running on willpower alone.

Then, as she deteriorates more you will need someone to come in and help you because the lifting etc will be too much for one person.

I am sorry to paint such a dark picture of being a carer, but it is tough.

My Liz is very loving and we are close. However it appeared to be part of her PSP that she was v e r y passively aggressive at times and some days for a whole day. She was never like that before PSP. She was always wonderful with the carers and everyone else at the same time.

So do be wary, your mother's behaviour might not merely be an unpleasant emotional reaction to the situation, but a more fixed stance toward yourself.

I used to keep reminding myself, "This is PSP, not her." But, as you say, it wears ones compassion down quite rapidly.

Warmly

Kevin

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Totally agree Kevin, I am in the situation of looking after hubby 7 years now since wrong diagnosis, it is emotionally and physically draining, I continually remind myself that it is not him, but it is hard.

Cheers Marg

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Yes, it's damned hard and it drives love and compassion out of the moment.

Seven years is a long time. I think my Liz is going down the road quite quickly. From first symptoms to Nursing Home was four years. I take my hat off to you.

Waiving hello and welcome. Sorry you've got is so tough, like all of us I guess.

Cheers

Kevin

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Thanks for the support Kevin-1, I have just had to return Leon to hospital, he can hardly stand, or pivot transfer now, I have also made the horrid decision that I can no longer care for him. I am in the process of applying to nursing homes, of course that is hard too, as they are all full, and he is HIGH care now. It certainly helps reading others plights too, realizing that you are not alone Hugs and waves back from Howlong N.S.W. Australia

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The first night alone in the house when Liz went into care was so empty. It felt like sleeping on a ghost ship.

Gradually over the next few days it became so clear that it was the right thing to do. It took a little longer for the guilt to diminish, but it did.

Its a hard step.

Waiving at you in Oz, from a sunny but chilly /southern England.

:)

(Howlong and the river - looks like a great place to live)

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Hi Kevin, Many thanks for your reply, it certainly helps, I woke so many times the 1st few nights, thinking I heard his noises for help, it is now 4 nights later and still waking several times, the guilt of not being able to keep him with me until the end, is unreal though, and guessing as you said it will take a while for that to diminish. We are Grey Nomads and sold up everything, hit the road 7 plus years ago, so have no HOME as such, just the Winnebago, which I love, but Leons needs became so that we needed a home, people we house/pet sat for over 2 years on and off, kindly invited us to stay this time, for as long as necessary, there are some wonderful people in this world. The house is on the river, which makes it feel cooler than the 46degs we are having at the moment. I will hit the road again when Leon goes to a better place. I love the lifestyle and meeting people and pets alike. Thank you for being there Waves and hugs Marg H

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Hi Marg

Yes, my experience exactly. We had a door bell system so Liz could summon me in the night. Quite a few times I would wake having dreamed it had gone off and been half way to her room before remembering.

For some five years I was a long distance single handed sailor. The joy of the footloose! Though the scenery was a bit samey some days ;)

Strength to you! It was only recently I realised that Oz is about the same size as the States - extraordinary.

I wish you the best of passages in this hard time.

Warmly

Kevin

xx

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Do you have others to help share the load? This is too much for one person to carry alone. You could possibly ask her dr if she could get something to help stabilize her mood. This is a tough disease and the caregiver needs as much support as the patient.

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My friend Marlene had the same experience with her mother. Her mother doesn’t have PSP but is very nasty to her now. Her mother is 91. She is now in assisted living. Marlene says she doesn’t know who this woman is.

Don’t feel guilty. You can only do what you can do. Even if you could stay at home to do the care you would still need breaks and help.

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Thank you all!

The Assisted living facility does help a lot with daily care. Mom is young, 66, and is not adjusting well to needing help, and right now the help needed is minimal (other than cooking cleaning and 24/7 on call help). She is struggling to accept that she has PSP, but refuses to take meds for her mood or talk to a counselor or support group (limited in the area).

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Yep, same confounding behavior/personality changes in my Mom. It’s the insult to the injury of having the disease that will eventually take your parent - it just seems doubly cruel at times. I can’t tell you how many battles in the past 5 years we’ve had. They can feel very personal and though I know rationally it’s the disease - it still hurts me at some level - probably because for the 50 years prior, Mom was my best friend and we rarely if ever fought. The worst was several years back when she got super suspicious of me - I suddenly became enemy #1. Actually, her moving to assisted living helped the most with this because she turned her accusations to the care staff to a certain extent. I’ve had quite a few calls of her wanting me to sue or to file a complaint for elder abuse because they won’t let her doing something that she wants. The staff is good to her inspite of her behavior.

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Ettavb, you have just re-inforced my mind that I am doing the right thing, looking for care for my husband now, 7 years plus of emotional abuse, knowing it is not him, is so so hard to take. I have tried so so hard, but am physically and emotionally drained. Thank you, this site is amazing

cheers Marg

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Don't give up your life, I have done just that, and it is taking it's toll on me both mentally and physically. My husband has had this horrid illness for over 7 yrs, I keep trying to look after him, thinking he won't have much longer, but he just keeps keeping on, he is negative in every other way, but his will to live is unbelievable. Like your Mum he is nasty,controlling,jealous,unrealistic which is a lot worse in the later stages of his life. I am now at the stage where I have decided to seek help and put him into care, I have told him just that, but am sure he thinks I will give in yet again, but this time I won't, it is extremely draining now and I am exhausted

Stay strong

Hugs to you

Marg

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I totally understand.

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Big hugs

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