Advice please on how to deal with dads unpredictable behaviour...

[Millie1218]

Dad has been fast tracked for and has been granted CHC which i have been told is a miracle, so why is it I feel so terribly guilty. I've been looking after dad since mum passed away in Feb this year and once diagnosed with PSP in hospital it all kicked off, dads nutrition went down along with his moods and of course his throat cancer along with the PSP is making swallowing hard. Dads managing with puréed food and very thick drinks and always manages the 3/4 chocolate mouses we take in daily (I'm so glad dad can at least get his chocolate fix). Dad has now been transferred to a nursing home only 10 minutes away from me which is great as I can see him every day. I was told it was the only option for dad because of his nutrition, swallowing, falling and the mood swings and that they felt I would no longer be able to care for dad due to his mental health bless him. I feel so guilty as I know dad didn't want to go into a care home. I feel I have let both dad and my mum down as I promised mum I would look after dad and feel I've failed. However dad loves the nursing home and thinks it's a kind of hospital which helps and has settled in well.

Right here goes how do you guys cope with the mood swings. One minute dad is calm and chatty,the next jumping up and racing off trying to find mum, his car it could be anything and if I'm not fast enough to support him he's fallen and is on the floor. Dad becomes aggressive at times and where one day he will accept the pubs are shut the next day will call you a liar. Bless him he is still hallucinating, we have anything from mice on the dining room table to pulling the plugs out of the wall thinking they are cans of beer!! I have never heard my dad swear he is the most kindest loveliest caring person with the most amazing smile yet he has told me to get out of his effing way and has pushed me several times. I know this is not dad but I would love to know how to calm dad down and would welcome any tips please. I have tried changing the subject, agreeing with him, hugging and kissing him and telling him how lovely he is and while this may work one day it doesn't the next!! This awful disease seems to have come from nowhere and has taken over my dad, his mind is no longer his and I hate seeing my dad like this. I just hate PSP with a vengeance and feel so helpless. Thank you all for letting me ramble on, take care lots of love to you all xx

[easterncedar]

Dear Millie, I don't know of any sure way to deal with the mood swings and hallucinations, except to make sure he's not on any medication that could be making that worse. There are several used for incontinence that might do that - is he taking any? - and some anti-Parkinson's medications the neurologist had us try that have hallucinations as a known side effect. I was always warned to start those only on the weekend so he would be under my watchful eye in case they caused a bad reaction. You might check that just to be sure.

Aside from that, and more importantly - LOSE the GUILT! You ARE taking care of your father in the very BEST way to have him in a nursing home. That he loves it should allow you to get rid of that thought once and for all, but even if he didn't, that you made the best decision for his safety and well-being means you have absolutely fulfilled your promise to your mother. Absolutely!

You take care of yourself now, okay? And keep in touch. All the best, Easterncedar

[Millie1218 in reply to easterncedar]

Thank you so much for your reply, dad was on anti Parkinson's medication but is not any more maybe it takes a while to come out of dads system. I really have learned so much from you all and it helps just reading all the posts. I think I need to just accept things as they are and take each day as it comes, thank you for your kind reply and I will check with the Dr to see if they have changed any of dads medication. Lots of love xx

[easterncedar in reply to Millie1218]

yes, take one day at a time - if this disease teaches us anything, it should be that! And isn't it good advice for all of us humans anyway?

[abirke]

I just reread your first post. At that time your felt like your dad did not have much time left. It sounds like now he has gained some strength back even though he refuses the PEG tube. I am afraid the behavior changes are part and parcel of PSP. You sound like you are doing the right thing...even to the point of accepting the need for a nursing home for him....You promised your mom that you would take care of him , and it sounds like you are doing just that....It may not be what you want , but it is what he needs. Besides, he sounds like he likes it there...good job! You might talk to his Doctors about antianxiety or Antidepressants to control his behavior.....this will make him more comfortable as well...no guilt making him feel better....

Remember you are doing the best thing for your dad, talk with dr.s about drug therapy for behavior, Love him like you do and give yourself a big hug cuz you are taking on such a big task ....give yourself some credit

(((HUGS)))

AVB

[Millie1218 in reply to abirke]

Thank you, dad is on anti depressants but I didn't know that there is medication out there that may help with dads behaviour. The Dr has prescribed medication to help dad sleep as sometimes dad doesn't sleep for a few days and is super hyper bless him. I will ask to see if there is anything that may help with dads moods. One minute they are asking for us to have everything sorted re peg etc and are telling us he has gone down hill fast which makes us think the worse, the next dad is chatting to the carers and seems strong. The ups and downs of PSP !! Take care lots of love xx

[abirke in reply to Millie1218]

Isn't it a rollercoaster! B's neurologist is always a bit shocked at B's downhill bent but it's not a concussion thats happened to our men's brain! It's gonna get worse! sometimes slower soemtimes faster but it's gonna be what it's gonna be!

Talk to your dr about antidepressants for specific mood swings...I don't know what it is , but I thought there was something specific....We have not needed them so I may be all in the air about it...Good luck to you Millie...you are a good daughter.

AVB

[fothergilla in reply to Millie1218]

My Dad has huge ups and downs as well. I have figured out that his bad moods do correlate to sleepless nights, but sometimes he is just plain mean. Hard to deal with. Sometimes I just have to say I have to leave now and come back later.

[doglington]

Looking after someone means doing the best we can. You are not god and therefore cannot promise any one the future.

Sounds as if you have done a great job for your parents. You have had to take decisions for the best. No guilt needed.

My husband doesn't have as much disturbance as you have described. Agree you should look at medication. Hope you sort it.

love, Jean x

[Millie1218 in reply to doglington]

Hi Jean

You are right Hun we can only do our best and dad is happy just seeing us and all I want to do is spend as much time as I can with him. I think I need to accept that just being with dad is enough and not to over analyse how dad is behaving. You have all made me realise that although the moods are distressing they are not dad and I must remember that. I read all the posts and they help so much. Some make me laugh others cry but they all help. I am definitely going to ask the Dr re medication for dad.

Thanks again for your help I really appreciate it. With love xxx

[DenB]

Hi Millie1218

Sorry to hear what you are going through with your dear dad.

When my husband is having a really bad day, or sometimes just a couple of bad hours, he could be crying or screaming or shouting swear words at me, or even trying to grab me, well, I have tried talking in a soft tone, sometimes I have shouted back( that never seems to work), I try to put my arms around him but one thing that does seem to take his mind off the moment is....cake! Sounds silly really but if I offer him cake or something deliciously sweet, it really does seem to help the situation!!

Luckily, I like to always have homemade cake or bisuits in the tin, just in case we have visitors, so it is never a problem......try it!

DenB x

[Millie1218 in reply to DenB]

Hi DenB

Well that is something I can definitely do as my son, dad and I all have a sweet tooth so there are always sweet treats in the cupboard. Dad can only have puréed food but I'm sure I could mix cake with cream, fantastic idea thank you xxx

[doglington in reply to Millie1218]

My husband doesn't shout but he always enjoys something sweet. Pudding ! always calms him. xx

[Millie1218 in reply to Millie1218]

Hi DenB

well the cake helps for both me and dad. I made chocolate cake mixed it with cream... heaven for us both xx

[daddyt]

Millie,

I have to tell you that the mood swings bother me the most, they would make Tarzan green with envy.... the other PSP baggage I can deal with. I can go from 0 to anal in under 3 seconds several times in a day... and that's not meant to be funny. Up until this point, I know when I have them but I feel like I have no control over them or even care. There is medication available that can help manage them, I know... I'm on it. It may take a couple of tries to find out what is best suited for your husband if you choose to go that route. As easterncedar has said... take care of yourself and don't take any of the nasty verbiage personally.

Hang in there, Daddyt

[Millie1218 in reply to daddyt]

I am sorry I haven't replied before but thank you. I only see what dad is going through from my perspective, I can't begin to imagine how you cope with the mood swings. My dad doesn't seem to remember them and is very confused but after he's had an attack does say he feels as though his head is floating. Its hard to see my dad who I've never seen angry behave like he does. I know he has no control over what is happening but it hurts to see him like this. I have asked the nurse about medication and she is going to get in touch with the Dr so fingers crossed. However they have given dad a sleeping tablet the last few nights and this seems to help calm dad. My dad is my dad and I love him no matter what and you're right what he says and does isn't personal and the good days far out way the bad. Thank you and like DenB says cake helps for both me and dad !! xx