Sinking ship

As caregivers we are faced with many challenges. Remember that we are here for a reason. Our assistance to those in need is so dire. Their pain and difficulties prevent them from expressing the gratitude that they have in their heart with seeing the care that we give them from our heart. Their frustration is against the illness and pain. Sometimes their frustration comes out to those around them, just to get some of the frustration out of their body. Your caregiver services are beyond what words can describe.

janiemae,
This is what this forum is for. To say it like it is.
I agree with where4 - it is so much more dreadful for the patient, their brains are scrambled and they know things are going wrong - and it is exhausting and soul draining for caregivers. Your brain never gets to shut down, planning, worrying, protecting, explaining, feeding, cleaning them, cleaning the floors, watching for what danger they could get into, are they sleeping too much, are they still breathing, it does not stop until their travel on this road to hell is finished. It’s awful for all of us.
I do wish all of us grace to navigate.

@nmrcdigman
Yes—you aptly described the list of responsibilities! (although I’m not sure about the “road to hell” thing—I guess you meant the care recipient’s hellish existence as they suffer the indignities and losses of age?) Not to mention the coordination of many many docs, labs, imaging, insurance approvals, referrals, forms, medicine schedules and their side effects versus symptoms of other things, guarding against interactions, etc. Watching hydration (not too much or too little), the PRN meds, monitoring vitals. Nurses and techs coming and going into and out of the home. And how to keep them engaged and active and moving as best they can. It is constant stress that can invade your dreams. And you are dealing with a grown person who has their own opinion about it all! In my early sixties, I am praying daily to not have a pessimistic outlook on my and my husbands own future with aging. I know there is grace and there can be good to be found in these times, and I personally have seen many blessings. But it is all really harder than anyone who hasn’t experienced it can know!

I cannot began to tell you how you and I could be living almost identical lives. I am frustrated, sad, scared and overwhelmed! The more I do the less he appreciates what I say, what I do or just being there.It never stops. Can you do this, can you do that, and thank you would be nice. Thanks for sharing. You are a saint. Please take care of yourself as well. 🫂 💕

Hello,
You said it so well. The words were some of the things I feel and see. The appointments, the planning, the meds, the cleaning, and , cooking. I know we only will be doing this as long as necessary. After all we said the vows "I n sickness and health". I have found out that I can do anything if I put my mind to it. But, like a Caregiver we get tired and actually worn out! We all have to remember that if we don't take care of ourselves that we might need care and what or who will help. Thank you for sharing!

I am so sorry this is happening to you. When I was in a caregiving situation, I had a real struggle with people lecturing me about taking care of myself but they didn't lift a finger to help me and the whole idea really seemed nonsensical. I relate to what you are saying and I think we, as a society, need to find some answers for this. God bless you.

Thank you!

You are not alone!
Hanging by a thread myself.
Taking care of yourself sounds good, but in reality is almost next to impossible. I have been on this journey with my husband for 5 months now. Wishing you hope, healing, and peace.

It's so difficult to relate to people what it is like to live with someone who has a brain disease. I went to lunch today with my husband and it was a lovely day, and everything seemed to be O.K. and then my husband looked at me and asked, "Are we married"? We have been married for 58 years. This hurts beyond words.

I read much of the caregiver comments and identify with it. It reminds me of being a 24/7 mother of four with a spouse who was rarely home. There were no breaks or people helping out - but I did find sitters so I could get out and exercise, there were schools. But I did this for a solid 36 years with four kids.

I cannot imagine having to care for even one adult male, with medical and dementia issues, on my own without help.

Is there not some place for adult day care or respite care workers available? Or is it a money issue, the expense of it?