I'm just back home from a week on Maui. My husband, Bob was finally diagnosed the end of November after years of increasing and worsening symptoms. At the time of diagnosis, his speech was very difficult to understand, eating was a problem, as well as the falls and leg cramps. The PSP was moving along at an unbelievable rate. By the end of January I was already feeling the effects of caregiver burnout, and feeling a whole lot of guilt for not being able to fix this, or even make him comfortable at times. I have wanted to blog before but it all seemed to be about me, poor me, crying all the time, feeling helpless and out of control. Then I had an opportunity to go to Maui for a week in March. At first there was guilt and I thought there was no way I would be able to leave Bob here, but thank goodness for my kids. They knew I was loosing my mind and needed a break, they would look after Bob and they encouraged me to go. From that time, the end of January until my scheduled departure March 7th, Bob had become week and lethargic, wasn't getting much food down, and weighed 97 lbs. We saw his GP the week before my scheduled trip, he referred to the nutritionist, who went over his options: have a feeding tube placed or don't, this is a life or death choice she told him....YIKES!! That was blunt and to the point! He typed out that he needed to do something. The day I left, they put him in hospital, were going to do a feeding tube through the nose, didn't think he would be strong enough to have the peg tube placed. Anyway, they got him well enough with just IV fluids, and got his electrolytes to where they needed to be, and sent him home for two days, and on the third day took him to have the peg placed. That was four days ago. I got home today, still haven't unpacked! He is still in hospital, they are trying to sort out his feedings, can only start with small amounts at a time. He has put on 3 lbs already and has lost the pasty grey hue and has a nice healthy color in his face. His strength is getting better and surprisingly, his speech is better...I didn't need to have him use his keyboard communication device at all! Anyway, I thought Bob was choosing death, which was not good for my sanity, he is doing well now and I am feeling recharged! If you are giving care to someone with PSP, and get to close to that breaking point, I highly recommend taking a break, not just an afternoon, take a weekend, take a week and rest and recharge yourself. you can't look after anyone else if you don't look after your own health first! And ya, you don't have to go to Maui, although it is very nice!
joan
Written by
laroux
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Hi Joan, good for you and I really hope you were able to relax and recharge while you were away.
With the best will in the world, it is an almost impossible task for us lay people to care effectively for PSP sufferers. We do the best we can with some help but it is such a strain.
Good for you. I say this both from a care-taker's point of view and now the person who's needing more care because of my PSP. Thank goodness you have supportive children, and thank goodness their is improvement with your husband. Keep yourself at the top of the list, tho. Going forward, when that feeling of burn-out appears on your radar, even taking a shortened time out can only help.
hi laroux im glad that you had a good time on holiday ]\\\\ all carers should be able to get away glad bob is doing so well ]] take care\\ both of you where would we be without the carers LOST i think \\ well mate this is the second time i have answered your blog\ but have lost my reply both times so this will be a shortened version did i hear you say thank goodness !!!!!!! see yer peter jones queensland australia psp sufferer
You speak for all us carers. It is so easy to keep going and not realize the toll caring is taking. It was only when I had my first break for a week that I noticed how low I had got. Those few days away made such a difference. Sadly for us the home I found for my husband is now full with permanent residents so I am looking for a good alternative.
At the moment I have no help apart from my daughter who works full time and does what she can to help out when she is at home. However, the time has come for me to start looking for some outside help.
Best thing about your trip is that you got your kids involved in his care. This is an important step and not to be taken lightly. It's good they are willing to step in when you need a break. My kids would do it also but many others would not. You crossed an important point with the Hawaii trip. Don't beat yourself up over it.
so glad you had the break and that bob is improved too
htis PSP is difficult to deal with 4 those of us who have it never mind the carer/ partner !!
i can see that - the falls are v difficult ot accept and the communication probpems are too - which is why it is important ot have yoru plan set out whilst you can still communicate your wishes to the carers / doctor setc
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