PSP Association
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Respite vacation-help or hinder?

Respite vacation-help or hinder?

Hi All!

I'm back from a long needed vacation. Once the thought of having a break was a very wise decision and was suggested by many, (including all of ya'll), I couldn't get out of town fast enough. Lol! I hastily put together a plan of action, acquired a caregiver(BF of my sister's),called my friends for a place to stay, made my flight reservations and tried to prepare the caregiver of all that transpires during a given day and night. As if I could really prepare someone for what we all do. Silly girl! Granted it wasn't the ideal setup for the situation, but if I didn't get away, I was going to lose my mind and what patience I had left. I was soooo excited I left updates of my progress every 15 minutes on FB. (ie. on the road to airport, checking luggage, at boarding gate, etc) Really quite comical, at least my friends loved it. Lol! I arrived at my BF's house and proceeded to talk nonstop and at warp speed explaining all that I have dealing with. Lord, I needed to purge all those thoughts and feelings. Fortunately, my BF just listened and empathized, then told me go take a nap. Ha! Well, I passed out on the bed face first and didn't wake up for 4 hours. I guess I was a little tired. We then proceeded to go out to dinner and visit with old friends. It had been 7 years since I saw them last. Wow! The rest of the week was filled with shopping, naps, dinners, naps, visiting friends, naps, wine and more naps. I thoroughly enjoyed myself and only worried a little bit what was going on at home. I had a sneaking suspicion that things were taking a nasty turn. I knew going in that my sister's friend that was taking care of her and my dad was opinionated and wanted to do things her way, but I went anyway. Before I even left she was already taking command and changing the system that was working for us. Needless to say, she proceeded to try and make things "better and more efficient" and "to help fill in the gaps" where needed. She quickly found out that taking care of someone with PSP is not a piece of cake, she also had the added icing of taking care of my dad. I had left her with reinforcements of my cousins and hired caregivers and she still had to call in her own reinforcements of another friend of my sister's. Somewhat funny and enlightening. But, her friends proceeded to over step their bounds and looked into my sister's financial and health plans and tried to change those things as well. This is where I began to think taking time off wasn't such a good idea. I was furious and extremely hurt that they would think so little of me to "look into" how my sister was being cared for. I am still having problems handling those thoughts. As I was driving home from the airport, I had to get my cousin to go and relieve her before I arrived home. I couldn't face her for fear of what I may say or do. I know they meant well because they love my sister very much. But, it would have been nice if they had long ago come and ask me what they could do to help and not force themselves or their opinions on us. As I have mulled over these happenings and heard my sister's and dad's reactions to their care, I don't feel as bad. They didn't like the changes and were glad to have me home. My sister even said she forgave me for leaving. Ha! I really needed the "Me" time and I really don't regret taking that time, but there was a price to pay. There will be a next time, maybe timed a little better and better planning. I do foresee needing another break down the road. I'm sorry for being so "long of tooth", but I guess I needed to get it off my chest and talk it over with you, my comrades in arms. So, now I will turn it over to you. Let me know how I could have done it better. Thanks for your patience and continued support. Gracie girl

One of my posts on FB while on vacation.

12 Replies

Is that you in the picture? hahaha sorry thought it was cute....that was you at the beginning of the vacation I'm sure you were back to your own self by end of vacation!

Well you know that when you leave someone to substitute for you they are going to find what they think are the glitches and either complain and yak about them to their friends or go in and take command and make better changes; when all you needed the sub for is keep the patient from falling into the window/wall/furniture toilet! Oh well as long as the changes are reversible I'd give your sub a thank you for their extra thoughtfulness and tell them next time (never cut your ties....)just take care of the banal daily to dos and maybe write things down that might be better dealt with etc....You never know, without angry eyes, you may have seen a few good ideas.....IDK no one ever gives their two cents worth about B....not even his DR's ....oh well like you said you got it down don't need nobodys "better" opinion!

Well darling have a cup of jo or tea or glass of wine or all at same time and start scrubbing the floors and set your mind on how fun your vacation was....I'm envious of you...the funnest thing I get to do is go to Walmart hahahahaha!

Many happy memories



Oh, Gracie_Girl!

Carers need holidays if they can. The fact you slept so much says it all.

You did your best to set the care up and there is never ever enough time in the caring world to do all we would like!

Don't beat yourself up please!

As for their intrusions into you and your sisters affairs just reading it I felt like a betrayal and an assault. I am horrified!

You were wise not to face her, well done. I guess that means you don't want to damage the relationship?

I can't advise you what is the best thing to do now. Of course only you can work that out. Are these friends of your sisters BF known to you? Are they acquaintances? Will you ever see them again? If you won't be seeing them then the issue might just be with your Sister's BF... did she know what they were doing?

I have found that, for me, there are two ways forward with things like this. First do and say nothing (but store papers in a locked drawer). Second to work out exactly how you feel about it and tell them your feelings about what occurred. Maybe emphasising that this was your sisters privacy which was invaded. I would avoid judgemental comments about rights and wrongs other than this,they tend to lead to arguments and your feelings and your Sisters privacy are inviolable.

As for people making changes... Well people can be a little over self empowered sometimes (read arrogant and dumb if you like ;)) Must have felt undermining... Personally I would let that go.

I do hope this helps.

Hugs and smiles


(Kevin my husband and carer and I talked a lot about this and wrote it together.)


What a brilliant picture! Help or hinder? I think I am probably almost on my own here but the 3 times I've had respite in the past it has definitely been hinder. I made a decision in 2014 that away respite is not for me but I wouldn't want to put anyone else off. We all need a break but I get little and very often rather than a longer break away,meeting/eating with friends at least 3 times a week and if they come here, even more. Last night I was out with 26 others and got home at 12.30 am, aching with laughter and just a little bit tipsy. C had a sitter this morning and 8 from last night spent the morning clearing up after last night and more laughter and drinking strong coffee. I had a little doze this afternoon though...I'm not as young as I was. So get breaks where you can. If you can't do it my way, time away is definitely needed. You asked how you could have done better. Not necessarily better but maybe less hassle if you had employed a professional carer. It would have been expensive but they may have stuck to your routine and not tried to change things.....unless you got one like my charmer on Sunday that is.

It sounds as if you had a great time while you were away so I hope you are now feeling the benefit.



Hi Bev . I have missed you all , not been receiving the e mails .

I feel the same about respite . Apart from worrying too much , I am sure I would end up visiting and staying all day . I know it would set John back even further .

How are you and colin.

I a, going to ban holiday periods , these illness don't get a holiday do they .

It's making a mess of the carers rotas and the ones we have been having are all off the same time so we are having one ont very familiar.

I am not sure hoHi Paul it may take a while to get to the correct therapeutic dose for you I have sleep problems but think it's a combination of Parkinson's and the meds I can go about getting my emails back as they were . Would u know xx

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Hi Cabbagecottage, We are plodding on OK. Pleased you are back on line. Going to have an afternoon nap now as my eyes are closing writing this. More later.


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Hi Gracie girl, first, I am really glad you had a lovely time with your friends. Lots of fun, laughter, wine and more importantly rest and recuperation.

Obviously what happened at home wasn't correct behaviour. Well done for not having any sort of confrontation. The first question and probably only one, were your sister and Dad fit and well, when you got home? I think the answer is yes. END OF,!!!! OK, somethings didn't go to plan, but they survived. Your sister was glad to see you, another huge plus! Every cloud as they say.

There is always a price for everything we do, we just have to ask was it worth paying? If you feel better than you did before you went, then the answer has to be yes.

I think your lesson has to be, not to leave the next holiday until you are at breaking point again! Start planning it now, sort the date, where you are going and then start organising the care. None of us are capable of getting things completely right, when totally stressed. PSP is not easy to look after, us that do it day in day out, take a lot in our stride, so perhaps add a few more Carers next time! If your sister knows now, that you will be going away again, maybe, she might be more accepting before you go. Again, easing the stress for you.

Like everything, respite is a learning curve. You needed that break, your Dad and sister survived, glad to see you home. So for your first time, I think that's pretty good!!!

Forget the rest!!!

Lots of love



You are sooo right, Heady! It was an enlightening experience for all of us. It has been suggested that I take "mini" breaks for maybe a long weekend every quarter. I would be better prepared to leave and so would S. and my dad. It is something I will be planning in the near future. I kinda liked being away in a state of bliss. Ha!


I've not had respite as yet but because of Ben's broken hip I'm sure things will change at home and I'm going to need help when he comes home. Not sure how I will feel leaving him in the care of someone else. Sounds like NannaB has worked out the best way for her to get respite in short regular bursts and Heady takes longer breaks every few weeks. It's a very personal thing and you have to do what feels comfortable for you. I think you were wise to avoid confrontation as the stress would have taken away all the benefits gained during your well earned break. I guess you have accept that letting someone else take the helm is always going to be different, understand you were cross at her snooping into other people's personal affairs but as long as no harm done let it pass. Glad you enjoyed time with your friends away from PSP, hope your batteries are fully recharged until the next time.

Love Kate xx

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Well, you all got a reprieve. I have been working on a reply to your comments for the last 30 minutes and I somehow hit a wrong key and lost it all. It's really late, so I'll try again tomorrow. Good night all! Hope you all have a peaceful night and sweet dreams.


Gracie girl

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My own experience [ one break ] was a good learning curve. It happened suddenly and I was not at breaking point. He went into hospice so no-one was in my home. Still difficulties in accepting loss of control. And feelings evoked.

I think you did brilliantly in the circumstances !

I echo everything Heady said. Plan and accept you can't control everything. There are often boundary issues in families, aren't there ?

Learn what you need to let go of in order to survive.

love from Jean x


Glad you had break.Now be kind to yourself, put all the negative things in an imaginary box, lock it and throw away the key. It is all in the past. You know that you are appreciated by the response of your dad and sister, that is all you need to remember from this episode. Sorry to preach, but it would be a shame if your break was overshadowed by the actions of others. Love the photo, by the way! X


Your dog photo made me laugh! LOL! Fantastic that you had your vacation!! You just made it happen and I think that is wonderful. I am mortified at the fact that those care givers would get into financial and personal health information. That is just terrible. You did the right thing and didn't face them--not worth it but now you know that they are never to be trusted again. That kind of stuff is unacceptable!



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