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Started by Mary M.

14 May 2014, 4:09 PM

Hi, I am new to this board.
I am caring for my husband who has COPD. We were told last June that he had maybe 3 months. I have been on leave of absence from work since October. We have no family, so I am the only caregiver. I do have some help from PSW twice a week and his doctor and nurse come to the home. They are wonderful people, but I am so tired. We discussed what he wanted- death at home. No matter what, I will do this for him.
I have read some of the other posts and I don't feel so all alone now. It doesn't make it easier, but it does help me to see that I am not alone in my feelings, worries and guilt. (There are times when I think, Lord, can this be done? Then I think, no, because done means I will not have him anymore.)
In the last week, my husband has declined rapidly. I and his doctor think this is nearing the end. Why isn't this easier? I have known, I thought I was prepared... Why isn't this easier?

I am sorry, I really just wanted to introduce myself and I went on a tangent. Anyway, My name is Mary and I hope to be able to connect to some of you that are going through this too. I don't want to feel so all alone.

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Reply by KathCull_admin

14 May 2014, 4:49 PM

Hi Mary
Welcome to our community - I am glad you found us.

This is a tough time – and I am sure you are physically and emotionally very tired – maybe exhausted. Being a wife, caring for your husband physically and emotionally, keeping the household going – are you able to recharge your own batteries? Are there those in your community neighbours or friends who could help?

An article you might find helpful as you prepare for your husband's death at home is Considerations for a Home Death

Look forward to hearing from you as you are able.
Take care
Katherine

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Reply by marstin

14 May 2014, 6:33 PM

Hi Mary,

You certainly have come to the right place to unload. Here it is okay to just let everything out as many of us are either going through what you are or have gone through it previously.

Caring for a loved one at home is a huge undertaking. It takes a lot of energy, patience and self care. I added self care because as Katherine asked, are you able to recharge your own batteries? So often when we are travelling this road we forget that we need to stay healthy ourselves and tend to put our own well being on the backburner. I remember how difficult this was to do.

I have to admit that as prepared as we like to think we are for 'the end', it is one of the most difficult things to deal with. I know that in our household we accepted that it was coming but when it did happen we were not at all prepared for the finality. We were so exhausted from the caregiving and understood that the pain for my partner would soon be over and that we should be relieved in a sense but there was no sense of relief at all. Just shock. I guess what I'm saying is that it's almost impossible to be prepared. It's a painful process that we all have to go through and I think that is why this forum is so important for many of us. We have people available to give support who have experienced the pain of watching a loved one fade away and who have found ways to cope with the loss. This is a place to share that load and know that whatever you say, feel or think is okay. There is no judgement here. Only kind, caring individuals.

Hugs,
Tracie

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Reply by Mary M.

14 May 2014, 8:48 PM

Thank you, Katherine and Tracie. I have been trying to recharge, but it is hard to do. There is always something. I know I have to be ok to help him, but I find some days the exhaustion is so much I can almost taste it.

As I said, I think the end is near. He no longer is eating or drinking, he been sleeping a lot. Monday his doctor was here and George (my husband) had a moment when he just asked "How long do I have" The doctor told him he thought 2 weeks or less. Since then he has declined so much more. He is not moving enough air to support his brain. He is not communicating very well at all.

The worst thing about this has been moving from partner to caregiver. I was always so proud that in all our years we had never had an argument. This disease robbed us of so much. I felt like the caregiver Nazi most of the time. "You need to eat, time for bed, drink your water" One good thing about this now is that I don't have to do this anymore. I offer, but I no longer have to insist. It was so very hard to know where to draw the line from fighting for him to allowing what is inevitable. I spoke candidly with him and the doctor and we all agreed that it was time to stop pushing. I have been living the day to day of care, house, groceries, nurses, doctor, et al that I have not had a whole lot of time to think of finality. When I do flit across it, I just see a void and I cannot think of how I will deal with it. I know I will, but... we have been a self contained unit for so long. There was no one I would want to spend time with more than him, ever and he me. These last few months were the only time that I just wanted away, just get in the car and drive, just go. Ahhh the guilt of that. I did not drive away- deeds speak. This is what I tell myself when I have a bad thought and feel guilty for it.

Thank you both for replying to me. Thank you for listening. I will explore the forum more as I have time and the link. There be angels here and I needed angels.

Mary

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Reply by KathCull_admin

14 May 2014, 9:21 PM

Dear Mary,
It's good you are connected to the palliative care program in your area - they will know of resources you can access for yourself too.

It is sad when a relationship changes and you can't share tasks, ideas, thoughts and touch. Especially, when as you say you have been a self-contained unit.

It sounds to me as though you and George share something quite special. Do memories of trips, occasions or everyday life the two of you have shared bring comfort?

Katherine

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Reply by marstin

15 May 2014, 2:14 AM

Hi Mary,

It sounds like you have accepted that you can't force George to eat or drink. That's a tough one. Our logical minds try to push for them to keep taking in nutrients so that they can fight their illness but the reality is that their bodies do not need any of this at a certain point.

How fortunate you have been to have such a loving relationship. It's a tough transition to have to go from being partners to being a caregiver. I depended on Len to always have the answer to every problem and he loved to take charge of any issue that came our way. When our world fell apart, it was frightening. I think most of us want to run away at some point. This reality can be so overwhelming. It's hard to explain to people that have never had to deal with something like this just how difficult this is. It sounds like you are trying to cherish each moment that you have and further down the road this will probably bring you some consolation.

We're here to lean on.

Hugs,
Tracie

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Reply by Brayden

15 May 2014, 2:17 AM

Dear Mary,

Good to see that you found this site. Tangents are more than welcome. Tracie gave you some very good thoughts to ponder. I am sure most people will tell you that you can never fully prepare for that final moment. It will hit you at some point down the road. It would sure be good if you could find a few close friends to help you with respite now. You do not fully appreciate how much you are giving when you are constantly in the thick of it. Do not let the negative feelings and guilt pull you down. You are doing the very best that you can. Blessings,

Brayden

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Reply by grammakim04

16 May 2014, 4:50 AM

Hi Mary,

Don't feel quilty, I cannot tell you how many times I have wanted to jump in my car and just drive...I'm sure I would have driven around the globe by now.

I've learned that it's okay to have these feelings, please don't feel guilty, you are normal, we are just dealing with so much and it can be so overwhelming at times.

I have found when I hit times like this, I pull out photo albums of trips Chuck & I have taken and we go thru them and go down memory lane...such a special time for both of us. It takes us to a time before the illness....we laugh, we cry and realize how blessed we are.

Hang in there and come on here often, great people on this Forum to get you thru the rough times.

Kim

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Reply by Mary M.

16 May 2014, 2:45 PM

Thank you all for your support and encouragement.
Yesterday was a major challenge. My husband was so confused. When he gets like this, it requires so much more to care for him. He tries to do things and doesn't know how. We spend 20 minutes just trying to explain why he should not pick up his pump by the tubing. Or telling him he has to put his feet up and lie down to take the pressure off his sores he has developed from not shifting his position. Explaining endlessly that his meds are taken and taken correctly.It is exhausting.

This morning when I was getting him up, he was so lucid. I pulled up a chair and drank coffee with him. He actually was able to talk to me and understand what I was saying. I did not want to get him up. I wanted to stay that way all day. I started crying when I realized he was "back", that he was with me, his mind was mostly straight. I did not want it to end. But, he wanted to get up, and it did end. Back to confused.

I am so very tired and I miss him so much.
Mary

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Reply by marstin

16 May 2014, 7:19 PM

Hi Mary,

I can hear the pain in your words. It is so difficult to watch the decline of those we love. As the long conversations become shorter and the the ability to try to make sense of what is happening nearly impossible to do, it's a huge struggle. I think at that point we all try to mentally plead for them to go back to normal and it hurts so deeply because we know that it isn't possible. I think all you can do is treasure the moments when George is lucid and tuck them away in your heart. I have found that when I hit my lowest lows that I can close my eyes and remember those incredibly precious moments. They do bring comfort.

Hugs,
Tracie

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