Sinking ship

ask him what he wants to eat where he wants to go, then put the onus back on him " u said you wanted egg on toast" "you said you wanted to go to the park". Life as a carer is impossible at times but we keep going. ( people who don't care for others " will never understand the finer issues. My mum had dementia , so it was a battle and sooooooooooooooo frustrating., " I didnt ask for that " I didnt say that "

Dear Caregivers,
The role that you have assumed may seem lonely, scary, overwhelming, exhausting, and a million other feelings. While each of our stories is unique and personal, please know that there are actually others who have written the same story, or they will be. The wonderful gift of this blog site is that we are connected.
My story has 2 sides - I was the caregiver for my in-laws, one who had dementia. I am now helping my mom’s new husband as she is well along the same path and they are both in complete denial. My mom is frankly turning into a not nice person as her formally reasonable obstinance is growing by the hour. Two ignored medical symptoms by her husband and not noticed by her turned into a crisis that I am managed with extreme effort. I still want to cry.
And yet I have needed care and will need more with my two stage 4 cancers, one that sent a tumor to my brain that was successfully treated.
I know for a fact that having a serious illness is scary, overwhelming, exhausting and that this combination when added to medicine, surgery, various treatments all can make a person not themself. My husband, family & friends can never be thanked enough.
From my perspective, it is MOST important that the caregiver take care of themself first. Help is the hardest word to utter, help is the hardest need to acknowledge and sometimes the most difficult to find. But caregivers cannot help a loved one if he/she does not somehow find a way, a moment, a trick, a prayer to make their burden a little lighter. Especially if the story is long, or with a sad ending. I know that I need to be the best version of myself when I am in my caregiver role.

Good luck. Thanks to all of you with a well deserved hug 🤗.

@keepmoving2
Thank you for sharing your unique perspective as both a caregiver and a care recipient. You have helped me a lot today. I care for my almost 94 year old father in my home. He has a multitude of challenges to manage, as could be expected at this age. He is staunchly independent as far as he can be, and is remarkable by all accounts. That being said, his increasing care needs are significant and require a great deal of time, thought and courage and fortitude. I do try to do what I can behind the scenes so as to honor his dignity. I am sure he has no idea the extent of all I do, and I don’t want him to, as he would feel diminished. That being said, recognizing he needs high levels of help, especially from his daughter, really “sticks in his craw”. Where he can express affection to more distant family members, this is remarkably absent in our relationship. Your perspective from a care recipient standpoint, expressing how hard it is to receive help, has helped me today. Thank you!

I can relate to your situation my husband of 45 years asked me”who are you married to?” He thinks at times that I’m his mother. Has asked how long were Dad and you married and thanked me for the wonderful job I did raising him and his brother. It’s so sad, I try not to over react but at night I lay in bed and shed tears asking why us. May God guide as we go through this journey together, alone.

I understand how you feel. My husband and I have been married for almost 45 years. He believes that I am two different women. One he refers to as sweetie, the girlfriend, she’s the one he wakes up with every morning and smiles tenderly at and tells her he loves her. The other woman he refers to as “her.” “Her” is his care partner. She is the one that makes sure he takes his medication on time, makes sure that he takes his shower and shaves regularly, makes sure that he is dressed appropriately, schedules all of his appointments, and sees to all of his needs, she is also his driver which isn’t necessarily a good thing because he misses that ability. She is the one that he gets annoyed with because of those very things that she is trying to do to ensure that he is well taken care of. Even though I know that I am both women, it does hurt a little bit to know that he prefers sweetie over her. He will ask all along if she (her) is gone. I think he thinks of sweetie as the younger version of me…when we first met, fell in love and life was good. I do remind him occasionally that I am both women to which he will just give me a grin and then tell me he knows that. The idea of his need for a sweetie does remind me to show love and tenderness to him daily, even as I am going through some of the not so pleasant care partner moments. I cannot take his comments personally. This is a sad disease, but we have to find the smiles within each day that enable us to keep going.

Thank you for your reply. I try not to take it personally but it’s so hard. I’ve learned so much from this forum and am deeply grateful for the kindness, sharing of experience and support shown by all the members to each other, I don’t think that I could cope without all of you. Thank you, again

@janiemae I’m so sorry. I see that this post is a few months old, but still just as valid. I hope you’re doing better, maybe some help?
My husband was diagnosed in late December ‘24. For sure no one can feel what it’s like to lose a loved one in this way except those of us living it.

@lkbous Thank you for your response, every day brings a new challenge for both of us. His challenges are not being able to do what he use to, not having any memories of your lives together and the inability to accept that there is something wrong with his memory. My challenge is accepting that there’s nothing I can do to fix this situation but to understand that he’s doing the best he can, that I have to treat him with love and kindness and enjoy whatever time we have together. God Bless you and your husband and us as we all go through this life changing journey.
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