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Reply by JennJilks

03 Jun 2014, 3:15 PM

I am so sorry if I have offended you. It was not my intention.
I always think of traveling, when you put your oxygen mask on first, and then on loved ones.

If you are suffering, you must make the best decisions for your family.
I was hoping to give you more information and have you let go the guilt.
I suffered much guilt myself. You do the best you can, with the information you have at the time. My point was only that you can have a good death anywhere.
There are many myths around this issue.

I think you are wise to protect your husband from any unnecessary drama. Good for you!
take care of yourself, too

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Reply by Mary M.

04 Jun 2014, 2:03 PM

Hi JennJilks

I was not offended at all. What I felt was failure. I read the points you made and thought I was not meeting them. I know no one here would ever try to offend me. I just thought of all that I have done and continue to do- is it the best for him? Am I doing it with a willing loving spirit? Is it enough, is it making a difference in his last days?

Again, I am not offended, I am just having doubts as to my abilities. All is well. I will keep doing what I am doing, but will try to be sure that I am doing it with as much love and willingness of spirit that I can. I want his last days to be the best they can be.
Mary

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Reply by KathCull_admin

09 Jun 2014, 2:27 AM

Hello everyone,

Mary, how have you been? How was your weekend?

To Mary, JennJilks, Tracie, Brayden, Grammakim, Xenia and NatR, Dragonfly has started a new thread on Overwhelmed by my grieving Dad....HELP!! I wonder if you would consider responding to her.

Katherine

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Reply by Mary M.

12 Jun 2014, 12:52 AM

Hi Katherine,

The weekend was ok, but my husband is continuing to decline. Today he did not get up until 6:30 PM. He has never not gotten up. He was so tired this morning. His left hand was so swollen. The nurse came and said he hears a problem with his heart.

He cannot understand things. I get so frustrated sometimes, then I feel guilty. I cannot move him without his cooperation and he cannot understand when I explain what I need. I just don't know what to do. I had to strip the bed, wash the sheets, pad and him. I had to change the dressings on his pressure sores and dress him. I could not make him understand what I needed him to do so I could accomplish this. Lately, at night when I try to put him in bed, I cannot get him to understand to move his bum to the middle of the bed. I am so overwhelmed by trying I cannot even begin to voice it. I have asked if there is something I can use to help me do the mechanics and they tell me that there is a board, but it needs 2 people. I am not 2 people. I am all there is. I can lift him, but not a dead lift leaning out over the bed. I don't want to remove him from his home because I cannot do this. I worry that I will be told this is all that I can do.

I am so tired of the stress of this. I am so tired. I am getting headaches constantly and my arthritis is off the charts. And, as you see, I am feeling very sorry for myself. I am sorry. I really am. I just needed to vent I guess. Sorry.
Mary

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Reply by marstin

12 Jun 2014, 1:25 AM

Hi Mary,

I just wondered how often the nurse comes. I know we also had the assistance of home care where they would come in and clean Len up and get him comfortable and would change the bedding for me or at least help with doing that. Has that been offered to you? There should be more resources available to you to help you with this load. Is there someone you could ask?

Please remember that you are doing the best that you can. You are not formally trained in any of this and it can be very frustrating to be doing all that you can humanly do and still not feel that you are doing enough. It's very exhausting and when you have your own health challenges, it makes it twice as difficult.

You never need to apologize for sharing how you are feeling. Just being able to share the emotions can sometimes bring a bit of relief and it is understood here.

Hugs,
Tracie

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Reply by KathCull_admin

12 Jun 2014, 1:42 AM

Dear Mary,
As Tracie said, this is exactly what our community is for, a place to vent and be heard. I don't see this as feeling sorry for yourself - I see this as you having a safe place in which to be honest. It must be so hard and lonely not being able to share your fears and feelings with George.

Mary I am concerned that your health will be compromised even more. I know you want to keep George at home – would you be able to get more homecare? Or would you able to afford to hire help – maybe at night so you can get some rest?

Katherine

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Reply by Brayden

12 Jun 2014, 2:00 AM

Dear Mary,

As Katherine and Mary have stated, your husband has come to the point where he can no longer accommodate your needs. He is now too dependent for you to handle him by yourself. Even in the hospitals one nurse cannot do what you are trying to do. If you cannot get a lot of home care support, your only option might be to get him into Paliative Care. We all know how difficult a decision that is but I think your body is telling you that you have to make a decision soon. Please keep posting here as you have the energy to do so.

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Reply by Mary M.

13 Jun 2014, 2:43 PM

Hi Tracie, Katherine and Brayden,

I had a much better day yesterday. George woke up without the problems of the day before. This morning he woke up, but was very unsteady when I tried to bring him from the bed to the commode chair then on to the couch.

I have a PSW that comes in on Tuesdays and Fridays for 4 hours each of those days. I live in Bolton, which means that in order to do most anything, I have to leave Bolton. I am speaking of going shopping, doctor appointments, etc. Tuesdays I use (or try to use) as a respite day. I use Friday to run errands and grocery shop. Because he has these pressure sores, his nurse has been coming in 3 times a week usually for 1/2 hour. I take care of the dressing change when he does not come. His doctor comes in on Mondays. I am telling you this so you have an overview.

George is very bad when it comes to change. His PSW (that he likes) can only come on Tuesdays and Fridays- he wants to have her only. I know I should be telling him that he has to be more flexible. He also tells her things like "leave it- Mary will do it". I have told him he cannot do this, but still he does it. She actually does not listen when he is like that, she is a great PSW.

I know I am going to have to change the PSW situation, I am going to have to have more than his favorite one come for less hours, but more often. George is getting harder to take care of and I cannot do it all myself. (Although, he DID point out to me that I don't work now, I am on LOA, so I should be able to put things off. I can do them when I feel more like it. This was not received well by me) I know he does not mean to be so unempathetic, that is why I did not go balistic after he said that. When George is having a bad day, he usually does not remember what went on. Therefore, he does not see the problem. He also does not seem to understand putting off means it still has to be done.

I have made appointments with my specialists now. I am going to try and get myself feeling better. I know I have to do this, I have just put myself last. I also know that is not good for George or me. I have to take care of myself first or I will be in no shape to care for him. That is easier said than done.

I think, if George is "clear" when I come back from grocery shopping today- I am going to have what we call a "come to Jesus" talk with him. I am going to have to lay down some ground rules that will allow me to continue to keep him at home. I know he will not retain it, but that is OK, because I will have told him. I will then stick to it. Wish me luck.

Thank you all for caring about me. It is evident in each post you write. I don't think I could have gone on had I not found this board and the people on it. I mean this, I feel like you saved my sanity.

Mary

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Reply by marstin

14 Jun 2014, 3:48 PM

Hi Mary,

How difficult it can be trying to reason with someone who is very ill. Although they don't intentionally try to make things more stressful, the fact that they aren't seeing things as clearly as you are can be very heavy. I'm sure at times that you feel like you're swimming upstream and it is a difficult task. I think all that you can do is to do what you feel is right. We all have to do what works for us as each of our situations is unique.

It's good to hear that you are trying to take care of yourself. When you're in the midst of something like this you tend to forget how important you are in all of this.

Many of us come to this forum to try to find help and in finding the support here, we find ourselves reaching out to others as we share our experiences. Most of us aren't experts, we just feel a connection and do our best to help ease some else's pain. Sharing our experience's also helps us heal and it brings comfort to know that we are not alone. We don't always get it right but our hearts are in the right place.

Hugs,
Tracie

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Reply by Mary M.

19 Jun 2014, 9:50 PM

I am finding it very difficult riding this rollercoaster. One day George is pretty "clear" the next few days he is confused, not eating and sleeping a lot. Almost like he has to pay for that one day that he seemed to rally.

I see him one day (or several) where he is so confused mentally. He can hardly walk with help and he hardly eats or drinks. I think, "OK, he is starting to shut down" Then the next day he is more like his old self and I think "What in the world. How is this possible?" This is so very hard on my emotions. I feel guilt that I think "I cannot keep doing this". I feel grief because I think he is dying. I don't know how to handle it. I really don't. I don't want my husband to die, I don't want my husband to live this half life. I want it to end, yet, I don't want it to end becauser it means death. I feel guilty, I feel angry, I feel helpless, I feel hopeless. I think I am the worst person in the world for having some of the feelings that I do. I don't really talk about this to anyone. I haven't dared. Now I have and it was a hard thing to do. I can't keep this to myself as it is eating me up inside. I hope you all will still talk to me.
Mary

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