Since my parents have moved in due to dads psp, I have noticed a lot of neglect from my mom in her caring for dad. She doesn't want to be near him, she wants to watch tv and turns the volume up so she can't hear him. I have time and again tried to talk with mom about her feelings and she becomes angry and accuses me of talking down to her. My dad had many falls when they were both in their home prior to moving into ours. I take care of dad throughout the day and my husband helps me at night when he gets home from work. our older son and his wife and my younger brother help on weekends. Our older brother has medical power but in 5 years through this journey with dads PSP, he has never gone to any appointments and lives 2 1/2 hours away and when he does visit he only stays a day or two and mainly talks to mom only. I have heard from friends and relatives who live far away that mom is making up things that are not true. Recently I confronted her about something she had said to a relative and she responded with anger and lied and said that she never said anything. In order to provide as much safety as I can, I have installed alarms so that when dad goes to get up, we are alerted. He has started wanting to sleep more in his bed and is eating less. His legs are giving out and I feel he needs to be monitored all day and night. She doesn't want me to grind his food, she feeds him with a tablespoon and before he can get it swallowed she is putting more in his mouth to the point that he starts spitting it out and tries to tell her "no!" She won't give his pills one or two at a time depending on size and puts them all in a small med cup, 8 pills some small and 2 that are large and lifts his head up, tells him to open and pours them in his mouth. I have tried to get her to stop, even try to be there to help him eat, and give him his meds but I can't be there every minute and even when the caregiver is here she does it when no ones looking.
I don't know what to do or say to her to get her to listen. She acts more like she is jealous of the care he is getting and she isn't. When family or friends come to visit she will sit beside him and tell him she loves him and then cry and say "my husband is dying". When the company leaves, she is back in the kitchen watching tv.
Hospice will be coming in and I know they will help but until that is set up( hopefully this week) I need advice on what to do. I don't go to sleep till 3 am and I get up by 7:30 to help get boys off to school and husband off to work. Sit with dad until I need to go get boys from school and then sit with him until my husband comes home to help. I know I'm over tired but can't afford to not be there.
Just need advice until I can get more help in.
Thank you
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Momto5
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Hi, not sure really what to say, how healthy is your Mum? Has she got any mental problems such as Dementia? Sounds like she is in denial, how bad is your Dad, does he do anything for himself? Have you considered finding out about care homes? It sounds like he may be safer there, you cannot be there 24/7 , how would your Mother feel if he choked? Sorry about all the questions, can't really comment without knowing all the facts, you should get social services involved, they can assess the situation, you need help or you will burn yourself out, you should also discuss with your family.
Sorry not much help, but up untill last year i was a manager at a care home so i have looked after many people in the same position, it is a hard decision, but you have to think what is best for all of you, i think you are very brave taking in both of them, my thoughts are with you, good luck, many people on this site will probably be in the same position, so you will get constructive help from them i am sure. Take care Tisha xx
I would say there's a good chance your Mum is suffering from depression. In a way she is greiving for you Dad already as he is clearly not the same man she married.
People cope (or don't cope) with grief in different ways. See if you can persuade her to talk to someone.
Maybe some respite care for your Dad would give you a chance to get some rest, too. Do take care of yourself
Sounds like your mum is burn't out and overwhelmed to the max. It can happen to any of us when someone so close to us gets a disease that not in our wildest nightmares could we imagine. And lets face it when you describe PSP to an 'outsider' they look amazed & find it pretty hard to believe. Each part of both your parents lives (& your immediate family) has been altered so much. Whatever closeness your parents shared, independence they had, whatever plans they had has been squashed - Your mum perhaps is trying the block PSP out - I know I tried it as a coping mechanism!
Fortunately though I got a grip on things shortly after I starting to act like a "zombie" (Our 9 yr old daughters words) and I visited a professional counsellor (a scary first for me!) who shared a viewpoint - "Think of PSP as a disease, that is with your husband, not you". For me it was especially cruel words, because until then all I had read about PSP referred it as a condition or illness - which to me implied it could be cured in my husband's lifetime & there would not be a shortened lifespan etc etc. And I saw myself as partner to John forever as we had already been together for 25 years & he was only in his 50's. But now I had to recognise what was. I was pretty much destroyed with those words but it gave me the reality jolt I needed. I am without the disease so I owe it to myself, husband & daughter to look, learn & listen & do what I can in my life that is reasonably possible.
I called on as much outside help that I could muster. I needed to reassess life and get some sleep (Yep - you can only survive on 3 to 4 hrs a night for so long..). Some came through, others no luck but it was just enough to keep sanity intact and restore some form of normality (if there is such a thing!) N.B. It brought tears to my eyes to ask - I'm not into rejection & didn't want to hinder others with my life..Those who helped were through 'indirect' means but it gave me what I needed- Parents from the school helped with daughter before & after school, school teachers did the same, friends went to the shops for me, carers rosters were altered, friends helped with meal prep, tablets went in Webster packs & some changed to dispersable (Dr & pharmacist checked if Ok) & respite care was organised. I also found a trusting accommodating taxi driver & some of those many allied medical appointments were altered to fit in with me- lots of little things that went a long way...
Thank you everyone. I tried to explain to my older brother today that I thought mom could use someone to talk too, a professional. He informed me that this is what family is for so no help from him. I think my over loaded state of mind is probably making me look like the one who needs professional help.
SharonAB....
Your words helped me so very much! Everything you said made perfect sense to me.. Thank you so much for sharing.
My younger brother and myself and hopefully mom are going to go talk to a professional despite my older brothers opinion. Hospice should be coming this week.
My mum had Altzheimers for 15 years and the way your mum is acting sounds very familiar. I hope it's not but am pleased you are going to talk to a professional.
You all need as much help as you can get at this very stressful time.
I THINK YOU MADE A VERY WISE DECISION MATE SOMETIMES THE GOING IS TOUGH I KNOW I THINK YOU ARE ON THE RIGHT ROAD NOW GOOD LUCK WITH EVERYTHING
GOOD LUCK TO YOUR DAD AS WELL PERHAPS HE WILL GET SOME PEACE NOW AND ALSO I HOPE MUM COME'S AROUND TO EVERY ONES WAY OF THINKING FOR ALL YOUR SAKE'S GOD BLESS PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
Difficult situation. My take is to explain the total circumstances to someone OUTSIDE the family that is a healthcare professional. Then ask that person to have a SERIOUS talk with your mom. Make sure they understand that a very stern talk is in order. Even at the detail level on the feeding issue, pills, etc. Sometimes an outsider can get a message across that family can't. It's a matter of finding a professional willing to have that serious talk. If that doesn't work after a period of time I'd schedule another serious talk from a non-family member. Another tact would be to have a professional say "I want to make sure you understand the feeding process so I want you to watch me do it". If that person demonstrates the correct method and the DON'Ts it may work. Worth a shot. Good luck!!
As the wife of a husband with PSP I totally get your mom. It is so tough to be a caregiver to a spouse. I nursed my mother through a tough time. She was ill for several years with dementia, osteoporosis, and psychotic breaks. Not easy but nothing compared to taking care of a spouse. It is different in so many ways. Like me, your mom has fallen into her own problems that come with age. You are taking on a lot. Bless you and don't be afraid to evaluate and make changes as needed. It is taking our savings but my husband now lives in a very nice care home and loves it. I kept him at home as long as I could but was in a very deep depression. Now the time we spend together is quality time. We are able to find peace and joy together.
Hi Momto5
I really feel for you and I know how you need some support. I did it all for my mum, washing, and changing wet clothes and bedding daily, scrubbing floors, sorting out meals, overseeing carers, all the hospital visits , taking mum out to ease her boredom while my sister got a few things at the shops once a week (I could have done that too but felt she should do something and it made sure she visited mum that way). She was an expert on everything when it came to me needing help and support and said things like why don't you ring this and get that etc but never rolled up her own sleeves. She didn't want to see mum getting worse and having left it all to me , turned around afterwards and told me I had 'taken over'. Words failed me at that point as I had even been to see a counsellor as I was finding it hard to cope. All I ever hoped for was for sis to say you have a day off, I'll do it today.
As regards your mum I think it is partly coping mechanism and wanting normality , partly resentment that their life has had to change but I too detect an underlying hint of dementia. Be aware that dementia doesn't just come in like a hurricane, it can creep in like the occasional draught and build into a breeze, if you get my meaning. It can start with odd behaviour occasionally and childishness and build into a problem. I would definitely get someone in to see her. Maybe on the pretext of seeing your dad? If nothing else they may be able to get other things in place to help you.
I really hope things improve for you, but as I often say it is not forever. Just hold on as it is a bumpy ride ahead. And talk to us, we have and are going through it with you.
I never thought about mom having dementia. Maybe that is part of her mood swings. I appreciate all the responses. I was talking to her today and she was totally calm and pleasant. Such a change. I will try and see if I can have her talk to someone about what is happening. There are just days that I feel like I'm losing my mind.
Hi Moto - I'm really sorry to hear how much trouble you are having - my parents were married for 42 years before my dad got PSP -before we knew what it was we (the kids) had no idea how bad it was at home for my dad. My mom was angry, mean -down right nasty to him, hateful but when people came around she would put it on sooo thick that it made me want to throw up - it was pathetic. My dad's family stopped calling her and calling me because they said they were calling about my dad and my mom was always making it about her. She would make up all sorts of things she said she was doing but wasn't - I was. My parents ended up divorcing which was the best for my dad - she wanted her own life and she was so angry - I couldn't let her make financial and medical decisions for him because of where her head was. I find it interesting that your brother has medical attorney instead of your mother - - if your dad decided that then things have probably been bad for a while. Sometimes really early on -PSP people can have some frontal temporal behaviors - filters and such are gone - you should read up on it - my mom goes back to some of the things my dad said to her and holds it against him when it was the PSP and not him- it is really sad. I ended up like you caring for my dad in my home where he passed away about 1 year ago. My mom still tells people that she did so much for him -blah, blah, blah -it's a bunch of crap but I try not to let it bother me - I figure it's her survival tatic to deal with her guilt. You may have to consider caring for your dad without her help - one thing I have learned through the process with my dad is that you cannot make anyone do what they don't want to do. People- even our loved ones don't always do the right thing or behave in the right manner. I would certainly encourage your mom to get some help - maybe your brother can help with her.
It never ceases to amaze me, peoples capacity to keep going when they are facing such difficulties. Some respite for your dad sounds like a great idea. You will all get some much needed rest and perhaps the opportunity to talk when the day to day pressure is off. It sounds like you are holding it together for everyone but you really do need to try and take care of yourself too. Good luck I hope you find some respite soon whatever form it may take. Coyle51
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PSP: To do what's medically recommended or respect my mother's wishes? Advice needed.
