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Reply by marstin

19 Jun 2014, 10:32 PM

Hi Mary,

Please don't beat yourself up for how you are feeling. Many of us have felt similar emotions as we've cared for our loved ones in their final days. It is a rollercoaster of emotions and you're exhausted. You want to keep doing the caregiving if it means they stay a little longer yet the other part of you wants there to be peace for him and for yourself. It's hard for you to make sense of all of the emotions that you are feeling but know that you are never alone and this is not something that you should feel any guilt about. It's okay. We are here for you.

Hugs,
Tracie

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Reply by Mary M.

22 Jun 2014, 7:40 PM

Hi all,

I am having a really bad day. George has gotten so much weaker and so much more confused. He is having a very hard time walking even with my help. I barely got him into bed last night. I was hoping he would wake with a little more strength this morning but he did not. If anything he was worse.

Lat night it was so hard to get him to his bed that is 6 feet from the couch. Once there, he could not understand the simple instructions to help me get him in and comfortable. It almost broke my back. This morning he was the same. I spoke to him several times about the changes I will have to make. I will need help in am and pm for bed or I will have to do something. I cannot risk him falling. I cannot risk me falling. He says he understands, I don't know what he really DOES understand.

I feel so bad I have been crying all morning. I feel like an utter failure, I feel like I might have to let him down. I promised to keep him home- I promised. I know I am sounding ridiculous, I just can't help it. I want to scream! This is not right!
Mary

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Reply by KathCull_admin

22 Jun 2014, 9:46 PM

Hi Mary,

Your words in the last post are so accurate – it is not right. It’s really hard when you have to be the one who has to ‘tell’ him when to eat, and when to go to bed. But it seems to me your hands are the ones he trusts (has always trusted) – and even though he may not be able to comprehend or understand when you are talking to him or providing him with care – if he were able to, he would know you are doing these things with love and for his best interests. These are not easy times for either of you – but I admire your courage in doing and saying the hard things.

Be gentle with yourself – we don’t have crystal balls to tell us how things will look tomorrow let alone weeks or months down the road. You made a promise to care for your husband at home when things were different. Whatever happens, whether you are able to continue caring for him at home with added help or he goes into hospital or hospice (for the support and safety of both of you) you are definitely not a failure.

Thinking of you Mary – across the miles

Katherine

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Reply by Mary M.

23 Jun 2014, 12:33 AM

Thank you, Katherine.

I just can't quit thinking about what I might have to do. The doctor comes tomorrow, as well as the nurse. I hope there will be help to keep him at home. I can hardly stand the thought of him away from home. I know if I do have to put him in hospice care that I would do it because there is no other way to keep him safe, but it will rip the heart out of my chest. He says he understands this. I hope he really does understand.

I will post once I know what I am going to do. This is not easy- why does EVERYTHING have to be so damned hard? Just when you think you have hit terminal hardness, you find that no, it can get worse. I don't know what I would do without your words of encouragement or a place to vent. I tried calling my daughter in Texas and she has her great comeback of just don't let him get up anymore. He is not a goldfish you can put somewhere and throw food at once in a while. He matters, his quality of life matters. Whatever that may be for him, it is all that he has.

Mary

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Reply by moderator | modératrice

23 Jun 2014, 1:51 AM

Hi Mary,

I agree with Katherine. Your promise to keep George home was made when circumstances were different. Whatever decisions you make now will be the right one based on the choices and situation facing you now. That is not giving up or failing. It is making the best decision you can given the circumstances.

Have you ever had an occupational therapist come to the house? Occupational therapist (OTs) can help get your home set up to make things easier for you to move George and they will deliver the equipment. The equipment rental and delivery are free. They install everything such as bars on the bedside, toilet seats, walkers and more. Ask the nurse about it. Are you connected with CCAC?

Hang in there Mary. Please don't judge yourself. You're doing what has to get done and you're doing the best you can do.
Colleen

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