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
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abirke
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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.
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,....
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.
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
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.
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.
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
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.
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.
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 ....
Thank you for sharing that post. Heady has a way with words that makes you stop and think. PSP is a vile, evil disease that leaves us all asking how to cope.
I lost my husband in November 2017 and I still find myself wondering if I could have done more. It's too late now but the questions continue. There doesn't appear to be any answers.
Hi Pat, thank you for your kind words. I don't think we will ever stop asking that question, "what more could I have done?" The simple answer is nothing! PSP ruled the roost, not us, we just played the game and lost.
I don't know if you know, but sadly AVB passed away a little while ago. Heart problems, I think, a reminder to everyone still caring, your health is just as important as your loved ones.
I didn't know. I look on here most days but didn't realise. I am now puzzling as to how a person with PSP deals with loss.
I am not looking into anything too deeply as I am struggling with losing Les. I was clearing some things in our bedroom and found 2 photographs of Les and I that he had stored away. Perhaps this was the time for me to find them. It was lovely to but brought back so many memories. I find myself sitting thinking so much at the moment and I am wallowing in grief once more. I guess there may be more to come as it suddenly creeps up on me.
I feel so lost now I am on my own. PSP is cruel and leaves so many memories it still affects me. I don't know why I feel so down as the weather is lovely.
Enough of my rambling. It's lovely to hear from you.
You are right grief hits when least expected. December was two years since Steve died. I had a complete melt down. Did some crazy things, finally worked out, with doctors help, that I was clinically depressed. Now on the happy pills and attending a course about low mood and depression. The pills are magic! Course quite helpful as well. Feel better than I have felt for years. Not really surprising after what we all go through over the long journey of PSP, then dealing with the aftermath.
Memories are to be treasured, OK they might bring on the tears, but that can only be healing. It still is one day at a time and I guess it will be for a lot longer yet. Be kind to yourself and take care.
It has to be one of the worst journeys. I know losing a partner is hard, but to see the journey PSP takes is so damned cruel I keep remembering Les saying "don't give up on me" and the look in his eyes when he said them. I know it isn't good to dwell on things.
No matter how I try it still creeps up. I think perhaps if you have a long married life it's difficult to not think if only. I am rambling again Anne.
That's the problem, isn't Jean? knowing which are the right things. Again, learning by bitter experience, what works for you.
I am great at the moment. Happy pills working well. Should have gone to the doctor years ago. Developed a huge phobia about them, after the way they treated Steve so badly. Found a nice young woman who understands.
Hope you are keeping well. Looking forward to out next meet.
I think life is full of "if only's" At least with a long time together, you know you must have got somethings right. Those are the ones you need to be thinking about, not the bad times. Although without bad times how do we know to treasure those special moments. It's all part of life's rich tapestry.
Everyone who is born have to die! But to get a miserable disorder during your last days is sad, to say the least! In PSP, which is an offshoot of a brain disorder, the patient's faculties keep shutting down one by one, and he/ she loses independence of action and inaction. Science is yet to find a cure, because science hasn't found the root cause of PSP. So much guesswork, but nothing concrete and evidentiary! In the meantime patients are suffering and dying and most of all, the caregivers are driven to the wall trying to imagine a way out! Every patient has his/ her own symptoms and reactions - no common thread running through! My wife is slowly losing control over her facial and vocal chords and muscles! Her jaw remains open, while she finds it difficult to keep her eyelids open! She has periods of swallowing difficulties, while she has lost her voice! So much strain and helplessness for the carers, including me! So many times I am reduced to tears just looking at her helplessness and mine too! On top of everything she has this bedsores despite the airbed, and dermapatches! Infrequent passing of stools and urine. You name the infirmity and she's got it! The greatest relief is that she hasn't displayed emotion of pain, am thankful to God for this! My sympathies for all those afflicted by this most unkind disorder, and for those caring for them as best as they possibly can, drawing from the experiences of those on this site!
Thank you for sharing these words of wisdom - super reminder. I love taking care of my Momma, but I do find myself realizing that I need to take care of me as well —- thank you again
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