My dad

[Becca9019]

I know that every case is different but my dad has been living with MSA for quite a few years but this past year he has gone down hill rapidly some days he's sleeping most of it and others I'm moving him from bed to his chair upto 10 times in 30 minutes and has got quite a temper also always shouting at my mum asking for a divorce and his appetite has gone everything has a metal taste apart from youghurts has anyone else noticed any of these symptoms with their loved ones many thanks for any help x

[Paul_and_Sue_Wood]

Hi Becca

As we know everyones symptoms are different and also how we deal with it from an emotional side too.

I would think that the outbursts are frustraton and having to rely on others and not being able to "be the man if the house" All you can do is sit and chat about the journey so far and work a plan out for the future.

My wife's taste buds failed as part of her symptoms and she did get metallic tastes also which we found was due to inhaler steroids, so we treated with a tablet to counteract.

The road we are all on is a twisting turning road with many branches to it, all we can try to do is slow down the journey and plan for each eventuality.

Paul & Sue

[TK-67]

Hi - as the condition progresses there can be different reactions to the drugs - it may be worth asking your consultant for a review? My mum got very angry as she got worse very quickly and this was made far worse by her 'parkinson's drugs' - these were reduced and she got much calmer.

[Hidden]

Sounds challenging. I hope you feel you have enough support for you too. Luckily my Dad hasn't done the angry thing, but he sleeps a lot. Kx

[chester2107]

hi becca , my dad went through a stage , when he used to shout and get angry , but as the others said it was frustration with him , as his speech was so bad , he had never shouted at me ever in my life, so found it very upsetting , my mum did as well

he wasn’t on any medication , as refused to take it , but a mild anti depressant helped

it’s so horrible seeing them go through it

love elaine x

[Becca9019]

It's just me and my mum caring for him when he first got asked about carers coming into help he didn't want them according to him we didn't need them then he said ok and his o.t came over and he has now said he doesn't see the point in them but me and my mum need them as one of us always has to be in the house as he can't do anything really so it's hard on me and my mum, just out of curiosity with your loved ones do they show any sympathy towards you as about a month ago my mum cut her head and my dad was shouting for us because he wanted to go to bed I told him what happened to my mum but he didn't seem to care about it has anyone else found that with their loved ones x

[FredaE in reply to Becca9019]

The decision about whether to have carers or other help should be based on your needs as well as his. A total loss of empathy is so hard to live with, especially from a formerly kind and loving person but makes it more important than ever that the carers are cared for as well. NEVER, ever allow anyone at all make you feel guilty about the help you need. Make no mistake this is a tough journey and you need all the help you can get.

[Hellebelle in reply to FredaE]

Totally agree Freda. No-one caring for someone with MSA should ever feel guilty asking for and receiving help.

[Hellebelle in reply to Becca9019]

Lack of empathy seems quite common with this condition. My dad was the most thoughtful person but had a distinct lack of empathy with this condition particularly towards my mum. He was adamant he wasn't having any carers in when my mum, who was 80 years old was on her knees. Sometimes the family have to take over and act in the best interest of both parties. When we children insisted dad had help, things became a bit easier.

[FredaE]

Yes I am afraid so.

My husband used to have spells when he wanted to trade me in for someone better but when the mood passed he did not remember a word and I never reminded him as it was clearly the disease talking, not him. Certainly frustration but also brain malfunction.

You just have to let it wash over you and at the same time not put up with any nonsense. It is so sad and I hope it passes

[Becca9019 in reply to FredaE]

It never does pass he has said it in pretty much every argument with my mum and he has also said it with out arguing

[FredaE in reply to Becca9019]

Treat it like the words of a small child - that is what it is. His poor brain is damaged and he can't help it We did once get involved with a serious discussion about whether it would be better to have one cat each or to cut them in half either from side to side or longitudinally and have half each as they were so fond of each other.. After a time he started to look sideways at me and the subject was not raised again.. You find out that you are stronger than you ever guessed you could be and you can survive

FredaE

[ChocolatePot]

my dad was very angry and rude with his MSA. He always loved an argument before, but with his MSA he shouted at my Mum for no reason and she was at the end of her tether many a times. In contrast my husband with his MSA has become clingy. He also gets frustrated by not able to do the smallest thing himself and rather than taking it out on me , every now and then he just sits and cries. Every one is oh so different and no 2 days are the same. Take care and do get help! Even my dad accepted help in the end. They started off with just an hour a week, to sit with him so my mum could step out for a walk. Small steps! But you need to take some time for yourself too!

[heysunshine]

Hi Becca,

My husband has not been angry and has alot of empathy for me as the main caregiver. We have PSW's that come in 2x/day to assist me with his feeding & showering. This allows me to eat WITH him rather than feeding him and eating my dinner afterward. Also, the showering and sponge baths in the morning allow me to organize the breakfast and my day.

It also gives me a physical break from the daily assistance required. He however never let anyone else toilet him except me. This made me have to adhere to being available within a 2 hour window if I stepped out to get groceries etc. while he slept or rested in bed. This caused me a lot of stress and made him always worry about soiling himself.

I just had to put my foot down about getting 'respite care' and more help to allow me to be out of the house and not worry about his needs and that someone capable was there to assist him. I mentally, emotionally and physically needed the break!

He accepts the PSW's help much more now... but feels his dignity is gone since he has lost the ability to do anything for himself. He especially does not want any of our kids to have to assist him in any way!

Basically, he copes by taking a rest in bed after breakfast for 3 hours... to allow me to do things in the home (I now also work from home) without him interrupting me and then just watches TV or YouTube in the afternoon until dinner. He doesn't get angry or act out, but just internalizes everything while reflecting on his situation when he rests each day. As for my part, I just tell him that I will do all I can, when I can and we get help for the rest.

Life with MSA is such a trial, and I am always trying to anticipate the next eventuality as Paul has stated earlier.

Best of luck to you and your Mum in coping with your unique situation.

[Becca9019]

With the respite care is that where they go to a care home for a few days???

[heysunshine in reply to Becca9019]

Yes, that is one type of respite care - overnight either at a facility or someone coming in.

I was referring to "day time respites" in which they provide a caregiver for a number of hours throughout the day, which allows me to leave the home and shop or go into the office etc. and the PSW (Personal Support Worker) stays with my husband so that he is not alone.

This is provided by our provincial healthcare system ( in Ontario, Canada) by our Local Health Integrated Network (LHIN) once you are assessed and qualify.

[Hellebelle]

Hi Becca,

Yes, my dad lost his ability to taste foods and he said everything tasted the same. He seemed to enjoy certain things though like strawberry mousse which he was also able to swallow well. He had periods of extreme sleepiness and would sleep for most of the day at times. The angry outbursts were also there. I think some of it was frustration as he was so dependent on others and some was possibly down to the condition as his personality changed during the course of the illness.

We tried to make the most of the times dad was more alert and and discovered he still had his sense of humour and retained his lovely smile.