Heady's Wisdom everyone needs to read!

I asked jokingly, how does one take care of themselves. Heady came back with an answer that should be read by the young carers in this disease as well as the old ones who need reminding:

" By accepting you can't do everything. Get as much help as possible. Go out into the world, at every possible moment you can. Realise that you exist as well as your loved one, look after your own needs just as well as you do for him. Get plenty of regular exercise, if only a short walk. Eat well, don't skip meals, because you are only cooking for one and can't be bothered. Make time for yourself, even if that means putting your loved one to bed half an hour earlier. "

Accept you are not perfect. You will get things wrong on a daily basis, you will lose your temper and shout and scream.

Most of all, realise that you are doing an amazing job, your loved one is totally reliant on you and you ARE making sure he wants for nothing.

Lots of love

Heady"

Thank you Heady for your words of wisdom , I just had to share this with the rest of our family here...

Lots of love back at ya darlin....how you doing, darlin?

AVB

31 Replies

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  • Thank you for your post of Heady's wisdom! Very much appreciated!

  • read and reread....I been doing this for a lifetime (well it seems like it,) and I still find it refreshing/insightful.

    ;)AVB

  • Thanks AVB for reminding us of this. I think I need to print it and read it often as I do try to do all myself. Nanny857xx

  • Yes Heady is right, but we all do everything ourselves, thinking we can cope, and we don't want people to think we don't care, we must all take Headys words to heart, and open up and let people/family help. Thinking of you Heady at this sad time xxxxx

  • abirke I never read what Heady had written. So very true. But since there was no one to help me until Tuesday, I put my love in the hospital. Maybe he has just an infection that is making him worse now. I didn't know what else to do.

    Audrey (aka Auddonz)

  • You did the right thing, Audrey. It probably is an infection and they know how to take care of that....enough fluids the right meds and care that will get him back home right away. I 'm sorry he is ill but take this opportunity to pamper your self a little bit,....

    (((Big comfort hug)))

    AVB

  • TY abirke.

  • Thanks AVB, I needed reminding, Margaret is still fighting the palliative drugs now 5 days since she went to sleep and allowed the drugs to work on her choke and lungs so she is in many respects now fighting the drugs that are supposed to allow her to depart this world in peace. First 2 days we all sat round her most of the time I refused to leave her and had to be dragged off to get some sleep by my sons. We now have a watch system I still sit here at her side 15 hr a day but Margaret's sister and my sons spell me and I am now getting sleep.

    Sharing the load getting assistance to help with care was one of the things Heady drummed into me (us) but in the last couple of days I forgot but family and nurses are brilliant and made me remember the main carer must remain healthy or the whole system falls down.

    Thanks AVB and Heady. Tim

  • What are the drugs? And I am so sorry you are going through this....all of you; God bless your family who are helping you . Sleep well and care not about tomorrow for it has worries of it's own. If your wife goes on without you being there, well honey remind yourself how much you were there when she was. That you may have been out of her presence does not minimize your love or devotion to her.

    I don't know what type of drugs but I wonder if they are having the opposite effect on her specifically....I'm sure the staff there are well versed in the meds but some of us respond differently to meds If she has been on them for 5 days could you talk to the dr about other options or maybe allowing her to go naturally? I hope I haven't crossed any boundaries or misspoke, just trying to support you Tim. God bless you

    AVB

  • Hi AVB it is a way of easing someone into a peaceful end. They stop all her usual meds and replace with a cocktail designed to close the body down. A mix of powerful drugs including diamorphine for pain relief, a special drug for stopping secretions in lungs and tummy, and couple of others to relax the muscles and allow deep sleep. Usual timescale 24 - 48 hr. With Margaret though after chest and lungs sorted started to fight the new regime as she did PSP with all her mental strength. GP now getting concerned as regime only for 7 days as no water or food allowed the meds would cause complications. So it is a waiting game definitely not easy.

    Best wishes for you and B this new year. Tim

  • What a fighter she is Tim !!

    Thinking of you both.

    love, Jean xx

  • I have never heard of this before...

  • It is a similar regime to that developed in the hospice movement. Normally allows a terminal patient a peaceful and dignified end. In a few cases, Margaret being one, it allows a mentally strong person to resume the fight after the initial drug induced rest.

    In U.K. this pathway has had a bit of a bad press over the years but it does allow a dignified death as I saw with my parents.

    Hope this explains the process. It's 5am Margaret still fighting though chest infection has returned making her breathing less easy but no stress as she is deeply asleep. Best wishes Tim

  • I thought you were getting plenty of rest. Looking at the time of your post, it must have been at 5am! I know you will be able to rest later, but this side takes quite a bit of strength, even though the support is enormous.

    Hope Margarets peacefulness lasts.

    Lots of love

    Heady

  • Thinking of you Tim.

    Lots of love

    Heady

  • I have copied and pasted and I am going to enlarge the script and put it on my kitchen wall so that I can remind myself every day that their are 2 of us on this journey that BOTH need looking after

  • Good for you, and SO true no ONE goes it alone.....

  • I've said it before and I'll say it again, Heady is simply amazing and one very wise lady! Someone that has been there from my very first post that has offered me loads of fantastic advice and listened when I'm screaming out for help! We all love you Heady! ❤

  • Thanks for the reminder, I certainly put myself second and forget to eat at correct times and only get out when Ben is at the hospice. I can feel myself losing confidence in going out, or even wanting to, the very opposite to how I used to be. Thanks a Heady for the words of wisdom and I hope you are OK as we haven't heard from you.

    Love Kate xx

  • I know....I can spend all day in the cave.....It's so dark in my house because of his sensitivity to light....

  • I had the experience the other day of that losing confidence in going out - I didn't recognise myself!!!!! It was disturbing to me.

  • Thank you AVB, please don't think I ever achieved all of these things. Most of my b######t has been learnt the hard way. Or by the generous advice by past members and the more experienced ones now. NannaB the prime example.

    I am reading every ones comments and am extremely touched and moved by the lovely remarks and overwhelming feeling of love.

    Lots of love

    Heady

  • You, Heady and NannaB are in my heart! And although it must be incredibly difficult for you both I personally thank god that Steve and Colin both passed peacefully and are both now free of this hateful evil illness! My thoughts and prayers are with both of you and your families x

  • Oh Heady I am so thankful you feel that way. As with everything, I started 2d guessing myself and thought perhaps I should have asked your permission first. I really believe what you said are the basics of getting through this horrible disease. And nothing is ever smooth sailing, is it. You and nannab have definitely forged the way for others to set their own pace and survive this horrible journey.

    Well darling I pray that your next journey is filled with fun and laughter and good memories ....and all that you can be thankful for ....

    Love you,

    AVB

  • If there was such thing as a PSP handbook, her words of wisdom should be printed on the first page.

  • Yes that's exactly what I thought when I was reading it.....I surely didn't want her words to be lost on just me!

    aVB

  • Heady does have a lot of great advice. I hope she continues to read posts now and then to share her knowledge.

  • Oh Heady. The one person who is a beacon of light for us all.

    Bless you,

    Cuttercat

  • Words to live by, not only in our situation, but in life....you are no good to anyone if you are not good to yourself.

  • i agree;lol jill

    xxxxx

  • Love you Jill

    AVB

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