Caring for a PSP patient.

[JayneRogers]

I care for a PSP patient, when should we stop MAKING him get up into a wheel chair? He is getting more and more stiff. He can still communicate via hand squeezes and many days does NOT WANT to get up. His wife makes us get him up anyway! I just want to care for him the best ways possible! I’ll take any advice I can get!! Thanks!!

[easterncedar]

It's a difficult decision, and impossible to generalize about. It's good of you to be responsive to your patient. Of course you want him to be comfortable and for him to have some say in what he himself is doing. It's not an easy situation for you. I feel for the wife, too, who may see getting him up as a way of resisting decline, and there are medical considerations that support that, including keeping him mentally stimulated and physically moving, to benefit blood circulation and digestion. Does his being in a wheelchair make his care easier for her? If he is still eating, perhaps that's a concern? And toiletting? I suppose if you were comfortable talking to her you wouldn't be posting, and it's clear you don't trust her judgment. How long have you been working with them? Too many unknowns for me to give any real advice, sorry, but in the absence of any question of abuse, I suppose it's really her decision to make.

[Yvonneandgeorge in reply to easterncedar]

I agree with his wife about getting him up. I felt that getting George up it was keeping him going, staying in bed is not good for him. Sorry but I feel as his wife she should make to decision about her husband, sorry if I seem hard/horrible but I feel the final say is his wife? Sorry I had this problem with Georges care at the end and it’s very stressful. I am sure you have his best interest at heart. Yvonne x

[JayneRogers in reply to easterncedar]

She provides no care for him. She spends no more that 2-3 hours,if that much, per day. That is a cumulative total of griping at him for making too much noise coughing and waking him up to see if he is asleep. He is expected to sit I. The wheelchair a minimum of 6 hours. He generally sits slumped to one side or the other, or stiffens himself into a board like position. He has care 22 hours a day. When she is responsible for him she either sleeps or works at her computer. She will suction him but will not turn him nor change his diaper. I follow her wishes, just wondered how others in my position provided proper care. He has a feeding tube and catheter.

[enjoysalud in reply to JayneRogers]

I think it is IMPORTANT to follow the wishes of the wife. She has lived with him in marriage. She knows his pluses and minuses. You are new to this situation.

Many people cope with adversity in many different ways. Short of abuse there is no "right" way.

I am sure you have been hired for pay to give her relief, to do the chores of caring that she finds difficult or challenging....like changing his diaper or being with him for longer hours.

I think it is important to do what she requests and to be careful with your judgement. I would not want her to "sense" that you are judging her.....being family to a PSP person is difficult, and there is enough second thoughts and self-judgement, without outside negativity.

I understand that "your values" of how the wife should be "acting" is causing stress for you. I am sorry for that.

A mother of one who died of PSP, Los Angeles, CA, USA

[JayneRogers in reply to enjoysalud]

No judgement, just facts. I do exactly what she instructs me to do.

[HARRADL in reply to JayneRogers]

Thank you for sharing openly. This really is a tough one and again I learn from all if you. I would agree that it depends on the stage and what you outline sounds near the end. Others know better. The neurologist said something to me that resonated when I said last year that my mom doesn't want to do anything, just sit or sleep. I was trying to stimulate her and get her to do some mild movement. He said that sometimes wanting these things are more for us than for the person. I get it now. However, it seems important to though to continue movement etc. If it is closer to the end, I would say, my mom gets her wishes. It's all too painful anyway and a horrible journey. I won't be adding to it.

My two cents.

[doglington]

I think it depends on the stage he has reached.

When Chris was having palliative care he stayed in bed all the time. I wanted to get him up but the D nurse said it would disturb him.

Before that stage I always kept him moving as much as I could. I'm sure that kept him going. Apathy is a symptom of PSP. He would have stayed in bed if asked.

[Dadshelper]

If being in a wheelchair is unsafe due to his stiffness and possible sliding out then bed would be the best place TILL a tilt back chair could be brought in. Dad did have a nice recliner/lift chair he'd use at home and in the latter stage I used a hoyer lift to move him from bed to it. The only time Dad stayed in bed was when he was sick or just having a really bad day. Getting up provided a slight sense of normalcy and helped to stop pressure point sores from developing.

Ron

[dollydott]

I would go with his wife's wishes. Everyone above has given you great replies and I don't have anything to add.

It's really great that as a carer for someone with such a rare condition you have taken the time to seek out others that can offer you more advice than any care team can .

Well done you. You have shown you really care about your client.

Love Lynda

[Hidden]

Good Morning Jane... may l ask if this is your first time being a caregiver for a PSP patient.

I do commend you for discovering this site... there is a wealth of information for you to learn more about PSP & hopefully you can share your knowledge with others.

My mom had PSP & it was challenging to learn what was best for her as her needs changed often.

Best Wishes to you & your PSP family... Granni B

[JayneRogers in reply to Hidden]

Yes it is. I only want him to be comfortable and as alert as possible. I am checking into a different type of wheelchair. I think a hoyer lift would be better to transfer him as he cannot stand at all. We only have one caregiver at a time and the transfers seem to becoming more and more difficult. His safety is #1. Thanks for your input!

[Javan]

A supportive style chair would be more suited than a wheelchair.Not being isolated is a large part of keeping the brain functioning.

[Katiebow]

Dear Jane, it's a dilemma for you as you are obviously very tuned in to his needs and can see his wife being quite distant much of the time ( may be self preservation as too difficult for her to deal with emotionally) When Ben got to the stage that he couldn't bend, in his case near to the end of his life, it felt it kinder to let him stay in bed as moving him from bed to his recliner chair with the joist was proving too much for him. I believe there is a time when you have to realise it's just more than their poor bodies can withstand and do they really want to keep going! That's my view on the situation anyway but am sure others will say otherwise.

Love Kate xx

[NannaB]

Hi Jayne, If he can still communicate by hand squeezes, have you asked him if the wheelchair is comfortable. From a response to another reply, it doesn’t sound as if it is. He shouldn’t be sitting in one position in a chair all day as this can eventually lead to pressure sores. I bought a reclining electric wheelchair which enabled us to go out until 3 weeks before the end but he never sat in it indoors unless we were visiting someone else. It’s good you are going to investigate rise recliners and hoists. Is his bed a hospital bed which allows him to sit up and has a ripple mattress, again helping to avoid pressure sores. I let my husband make the decisions about going out etc and I was fortunate as he hated staying in bed and loved visiting other places but he was able to indicate if he was comfortable when I asked him. You may find he is happier getting out of bed if he has a more comfortable chair to sit in, not a wheel chair all day.

Best wishes.

XxxX

[Fer39wer47da]

Well, that is a pretty tough situation you are in. On the one hand you want to help your patiënt to be as comfortable as possible.,I.g. To give in to his wishes, on the other hand there is his wife, who wants him to be as mobile as possible.

I myself suffer from PSP, and I’m must say that we find ourselves often in the same situation. My husband wanting to take me out and me, I just want to sit quietly at home. I musto confess that most of the times , it feels good to have been taken out, except for the times that I’m completely blocked and when I fall too often, and that’s when the tears start flowing, much to my husband’s agony..I can’t give you any advice unfortunately . The only thing i can say is: play it by ear, if your patient isn’t to tired, by all means take him out. Even if he sputters against it. But when you think he’s too shaken, leave him at peace. Maybe you could work out a swapping system, in the sense of: if you come out today, we’ll let you the choice tomorrow . That would certainly work for me.....