Dealing with the subject of death

[Vickaleesky]

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Hello, I'm a part-time caregiver to my sister-in-law who was diagnosed with ALS in October of 2007. Her disease has progressed rapidly. She has been confined to a wheelchair for almost a year, she's getting so weak now that she has trouble pushing the controls, she's unable to do anything by herself, she's on oxygen, and Hospice has stated that they don't believe it will be long before she's totally confined to bed. Her speech is getting worse by the day but she still talks about 'when she gets better'. She has signed paperwork, in her early days of the disease, stating that she does not want a feeding or breathing tube, or any medication that would prolong her life; only wants to be medicated 'for comfort'. Is it fair to her (or my brother) to let her believe she's going to get better? Are we best off to ignore her comments? OR, do we help her to understand she is dying, in order to help prepare her for death? It's so heartbreaking.

 

[Katie C]

Of course those are questions only you can answer but let me ask you a question. Has she experienced cognitive involvement with her ALS? One of the effects of cognitive involvement or frontal-temporal lobe dementia is "lack of insight"... meaning you could explain to her until the proverbial cows come home that her illness is terminal and it's just not going to make a difference.. she's not going to "get it." Which is only going to add to everyone's frustration.

Personally... I'd just redirect the conversations as needed.

 

[BarryG]

The important thing in preparing for death is to carry on living. Living means loving your family and friends, making good memories and making sure that others can carry on after you are gone. If your sister-in-law doesn't want to believe that she won't get better then you can take the initiative and arrange it so that she is connected with the important people in her life even if you don't say that is what you are doing.

Thank you for bringing up this topic and welcome to the forum.

Barry

 

[Vickaleesky]

Thank you so much for your comments. I don't know anything about the frontal-temporal lobe dementia but it is something I will ask the hospice nurse and/or doctor about when I'm there next week. The hospice nurse sat down with my brother (Steve) and sister-in-law (Janet) about a month ago and told them that Janet's time is near and they had to get all of their affairs in order. Apparently the nurse went as far as to explain what they will need to expect and how Janet will 'probably' die. But since she still talks about 'when she gets better', or 'when she turns 70 years old' (she's 51) maybe it is dementia. It's just sssoooooo hard to hear her say these things knowing she's going down hill faster with every passing week.
After Steve was informed to get all affairs in order he started making phone calls to all Janet's friends who have started visiting every weekend. He also had to call Janet's brother and father (who had 'forgotten' about her).

 

[GlenBrittle]

I would say she already has dealt with the death issue "back in the early days" and now continues to believe she will get better as a comforting thought.

I would leave her to her thoughts and make some happy memories for her while you can.

Glen

 

[BarryG]

Everything about this disease is so hard, for the PALS and also for those who have to look after them. As long as your brother knows what is going on and is making the arrangements then there is no reason to try to convince her. Be strong and let her be, she has been told what is going on by the hospice nurse so if she doesn't have dementia then she knows and if she does have dementia it is not important.

 

[Katie C]

Thanks Glen & Barry for putting into words better than I did exactly what I was thinking. We took care of the "legal stuff" immediately after diagnosis. Now, when Glen doesn't want to talk about stuff, it's ok. When he's around we just follow his lead. When he's not around, we talk about a grand Irish wake that's some day going to horrify my Italian in-laws. (It helps that my co-caregiver is our 24 year old son who lives here part time.)

Barry, I do believe I will be quoting you often with "If she doesn't have dementia, she knows... if she does have dementia, it's not important." Brilliant condensation of reality!

 

[Blackpool]

I agree, leave her to handle her death the way she is most comfortable. Her husband knows the truth. Peace be with you all.

 

[sjpowers51]

This was a great discussion on a difficult subject. My husband has dementia/MND and I have been struggling with the question as to whether or not he really grasps the gravity of this disease. I don't believe so. Early on we discussed feeding tube and trach and he seemed to be clear that he did not want either. I recently asked him and attempted to explain what could/will happen and asked him again and he said "oh!?" and that he wanted to think about it and left me to ponder .. what would I do if I had to make a quick decision? Katie you helped me refocus on the dementia... you are exactly right, the lack of insight is a huge factor.

I want to thank everyone. Your responses, each one of them, has been very helpful to me and given me new perspective. The forum is wonderful -

I have no idea at what point Hospice is needed but am sure I will know when the time comes. Thank you.

 

[Vickaleesky]

Immediately after diagnosis Janet wasn't my sister-in-law (so I don't know if she accepted death at that time), and although we (my family) were all devastated by the news none of us really knew Jan very well. S & J live 70 miles from where I live, and my elderly parents and I live closest to them (S&J). Although we are close as a family, we weren't so close that we kept in constant contact; you know, everybody had their own lives in towns far away, plus, we wanted to give both of them enough space to make their own decisions on how they were going to handle this. When Jan was diagnosed she and my brother had been dating for only 4 months. My brother, I'm so proud to say, chose to stay with her even though she gave him the choice to get out while he could. They married May 31, 2009 two years, to the day, after they met. Therefore, I haven't really gotten to know Jan until this past July when I chose to become her part-time caregiver. I'm ashamed to say that it took me so long to get involved. You know the saying, out of sight out of mine, and my brother is not the type of person who will ask for help (sugar coats things to keep others from worrying. He was a bit PO'ed with me because I emailed my siblings to let them know how bad the situation is). Anyway, after spending one week with them I knew I had to step in and become not only her caregiver but his as well. He's no spring chicken and all of this has been adversely effecting his health. So, I now trade weeks with my 78 year old mother.
Thank you to those of you who are providing comforting words and advice. I need it so badly. I'm having a terrible time trying to understand what I should or shouldn't be doing. And now I'm crying so hard I can't continue. Thank you again.
God bless you all.

 

[judylyne]

2 weeks before my husband died the hospice nurse said to him "you know your dying don't you?" He said yes and changed the subject. All he said to me after she left was How long do I have? He knew even with ftd.

 

[flyingaseagles]

I am not trying to get personal but that sounds like something my sister would do. She is a pentecostal christian. She says that when you admit something is wrong then that is not believing that you are being healed. So she will not even admit she has RA. I didn't know if this was the reason or not. I just thought she was believing for a cure.
I know you are having a hard time. It is so painful to watch someone go through this even more if it is a loved one. This is the person your brother loves and you are worried about not only your sister in law but now your brother. You are probably both so mentally and physically tired. Then there is your mother who is 78 she is at a age that she isn't as strong anymore physically or mentally. I know you worry about her health. This disease can rob a person, why has she chosen to not take the peg, Bi-pap or medication that just don't make sense to me. The feeding tube is not a major deal and even people that have trouble sleeping use the bi-pap. Maybe your brother does need to tell her the truth and tell her he wants her to prolong her life and stay around with him. I know it is a hard decision, because you want to do what is best for her. I don't know if it is religious reason's or not but it would be easier if it wasn't because some people are very strong in their beliefs. I am so sorry I wish I had better answers for you . Hugs to you all Debra

 

[brooksea]

Vsky:

Thank you for caring for your SIL.

 

[Anastasia]

Hi, I fully support what Glen has contributed to your dilemma, and wish you and your loved ones love, support and time to share so that you are left with some happy memories to look back on. Take care,Anastasia.

 

[indigosd]

How are you today? Thinking about you.