This is what I've learned through this long PSP journey. I get medical professionals from Hospice and family saying they know I love my husband but I'm too involved.
When Charles struggles with coughing and he reaches out to me to help him, I go happily. Aparently I'm supposed to be calculated and calm.
I will never change the way I feel about my other half. The man I married and I love. And if he reaches out with sad eyes to his wife, I will be there now and forever.
Is this world so different now? Thoughts would be appreciated.
Cuttercat
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Cuttercat
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Don't ever feel pushed out and too involved .. no such thing.. I sit with my husband 4 hours a day - 6 days a week and his nursing home encourages it .. been doing this for over 2 years (feel like part of the staff now)! He is your husband and love is sometimes all we can give .. along with comfort and help.. At Steves funeral one of the songs is 'all you need is love' and I stick by that -- keep loving your husband xx
Cuttercut I agree with you. If the role was reversed you would want a loving hand to hold? I don't understand their thinking. Do they actually understand what is happening to him?
I think there might be a 'thing' in nurse training about not responding too quickly. Guessing it is a 'behavioural' based thing about not creating too much dependency and if the person gets a emotionally satisfying quick response then they will seek more and more support.
Just guessing.
But we are not nurses... we are lovers and family... Soo different.
Absolutely, the irony is that my husband Charles is a NURSE! Yep a BS/RN for 30 years. And how he's the patient. I think he sees things on a different page and understands.
Thanks so much. We are lovers and family and I'm grateful for this family online.
So am I and our irony is that my dear Liz was a Phys. Dys. social worker and managed carers for a few years... She has such a keen eye about how they do their care, probably less sharp than Charles, but she is so tolerant of the poorer staff, as long as they have empathy... She has such a scowling look about one or two who don't... but she never complains.
Life and irony.
I too are grateful for this family we have here too.
My husband is the other half of me and has been for nearly sixty years, no one could ever say I was too involved .I am and I intend be always, and be dammed what any one else says or thinks. It's nice to know others fell the same as I do ....
I don't understand either...Why do you think they said that to you? Are they worried about YOUR health - and saying you need to .. ? cut back on how much you extend yourself to him?? Sure seems an odd thing to say...
I am also like you I have had Geoff 56years and jump to assist no matter what it is because you love that person and that's all that matters best wishes
Love it the bottom line. There are friends who give me advice that just doesn't work and professionals are able to step away. I'm not and happy to know we all "love" and understand it.
Cuttercat load of rubbish why would you not want to be so involved, you have been together a long time, you look out for Charles and you fight his corner all the time, because he is your husband and you love EACH other, can’t believe they are being so insensitive. Agree with Amanda. Yvonne xxxx. George taps the side of his armchair for me to sit next to him xxxxxx
Good words from you Yvonne, couldn't have said it better. I'm still fighting and am in his corner. It's only going to get harder as you know but I'll see it through.
Cuttercat some people don’t realise that you care so much because you married young and grew up together after you got married, love is so strong big hug coming your way xxxxx
They are talking a lot of nonsense CC, how can you just st ignore someone who can do nothing for themselves, it's plain cruel in my eyes. Keep on responding to his needs, he needs you to help him through this arduous journey.
Ignore, ignore, ignore. You know more about Charles’ needs than the whole lot of people who come in to assist. Charles wants YOU beside him, YOU to comfort and care for him, YOU to love him unconditionally. Your heart knows what to do—listen to that! Sending great big hugs!
Our wedding vows included to love and cherish in sickness and in health. So you just carry on with what you think is right for both of you. Wishing you the strength to do so. Lots of love Nanny857 ❤❤
You can never be too involved when your loved is suffering with such a terrible disease. Haven’t yet read the other posts but I am sure if the boot was on the foot they would want their nearest and dearest with them. Do exactly as you want and that’s how it should be. Love Jxx
I think they just haven't been there yet. Female Chaplain has her husband, children, grandchildren and parents. All just fine. Wonder what will happen to her when it all comes tumbling down. So sad.
Wholeheartedly agree you are doing the right thing! You married and vowed to be there "in sickness and in health" and a whole lot more. With your partner over those 50+ years you have developed empathy and can often sense what they want without words.
Doctors know nothing of that empathy!
Keep it up - just don't wear yourself out. Do whatever you feel you have to. You will be comfortable in yourself later when you know you gave your All!
Hi Cuttercat you do get involved, you love Charles and you are driven to look after him,lt can be hard to stay calm,it breaks your heart to watch him slowly break apart,l have been married for 45 years to my Kathy and at night she breaks down and cries clutching me and i cannot control my emotion. I think the lows i have drives me to love her more .i know the time we part will be the toughest thing i will ever experienced.stay strong xx Peter & Kathy
Peter that is so sad. Thank goodness Kathy has you. It must break your heart but you are doing the right thing by being there for her. She knows you love her and that thought will help you get through things later on. You are there for her now and comfort her even with your tears. God bless you both.
Yes I feel the same way, when Charles clutches me like your Kathy I just cry inside. I love him more now than even. And I dred the end because the hardest part will begin.
Are the physicians trying to say something else to you?
It is not strange that a caregiver heroically dedicated in soul and body to the patient neglects his health, sick down and dies before the patient, leaving with it an even more complex situation.
I think the comment of the doctors, more analytical and professional, goes that way.
How on Earth can you be too involved. This is the person you married and have lived with for many many years. You do whatever is needed and wanted for your loved one. I did a lot for my Liz, but I still wish I had done more, regardless of "professional" advice. I would do it all over again and more. You 2 are really 1 and asking you to step back is like asking you to cut yourself in 2. CC, continue with whatever your heart tells you. Love is precious and cannot be replaced. Sending loads of Hugs and Very Best Wishes to you both. x
Love conquers all! Stick by his side, medical gets so cold and calculating sometimes. Prayers for you. You are the kind of person the world needs more. Nancyxxxx
You are a wonderful, caring wife. Your husband deserves to be coddled. He has the most horrendous disease imaginable. You will not regret your love and kindness after he is gone. Love him while you can. I showered my LO with little kisses all over his face and he loved it. Don’t doubt yourself. No one else can tell you how to do this. Only you know what your hubby needs and how much you can give. Xxoo
If it’s of any comfort to you, I’m much the same way. Even when my B was in the hospital and nursing home for 6 weeks, I was there 6-8 hours (until they throw me out) everyday.
You said it right, you can never love or care enough.
We are there to provide care, comfort and security to our husbands - in whatever shape or form- as they battle with this “monster”.
You can’t just sit back and watch your husband suffer and ignore his calls for help and comfort.
In an ideal world, shouldn’t we all be helping those who reach out to us . Where is their love and empathy . They should instead be praising your devotion and support of your husband.
I have learned that although many people are wonderful and do their best to help Dan, I must consistently be his advocate. He is my husband , my love, my partner . It is MY responsibility .
You are incredible. How awful that they make you question the help you give your husband . I’m so sorry.
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