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 Feeling Unsure 
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Feeling Unsure
Hi Everyone,

I haven't posted in awhile but I am reading regularly. I am really reaching out now because I keep questioning myself these past couple of days. Mom has had a serious decline in the past few months. It started with swallowing problems and coughing about 4 weeks ago. These symptoms came along with shallow breathing and the need for oxygen prn and morphine. She hates the oxygen but it does give her comfort once she accepts it. The risk for aspiration was high and Hospice took feeding off of the care plan. She was still eating and said she was hungry so I have continued to thicken and feed her. In the past few days she in coughing, has upper respiratory congestion, has spiked a fever, sometimes she is cold and sometimes she is hot. Hospice advises not to do antibiotics at this point. She is sleeping all the time, using the oxygen more and as of yesterday there is decreased urine output as well as smaller intake of food. Mom's regular Hospice nurse is on vacation until Monday. Unfortunately, the person they sent to cover for her is so clinical and direct, it is hard to take. She says she is "transitioning." I just want to do the right thing for Mom. She did not want to eat today, I don't want to coax her into it because she would probably do it for me. Anyway just reaching out for support....I just want to do the right thing and make her comfortable.

Nancy

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Sat Jul 10, 2010 2:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Feeling Unsure
Nancy, I hope I'm not being too clinical and direct here. It is quite possible that your mother has developed aspiration pneumonia. My opinion is that antibiotics would not be a good decision at this stage. Yes, it's easy for me to say that because I'm not [yet] in your position, but why postpone the inevitable? The longer she continues to live with this dreadful disease, the more opportunity for suffering. If the O2, the morphine and your tender, loving care make her comfortable, those are the measures to take. I pray your mother will have a smooth and peaceful 'transition'. Remember that death is an important and normal part of life that we each will face! God bless you!!!!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 10, 2010 3:43 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: Feeling Unsure
Thanks, yes that is possible, it could be silent aspiration. Her lungs were not clear initially but now they are according to the "clinical" nurse. I guess I am just reaching out for those who have been this far in the journey who have been here before. Ma has had LBD for probably 7- 8 years or so. I guess my biggest concern is that I might do the wrong thing, my mother lived for her children. I don't want to assume that she is dying, but I don't want to deny it either. I know her she would try to hang in there for me. I don't want her to suffer at my expense. I really don't know what to do.

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Sat Jul 10, 2010 4:07 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Feeling Unsure
Sounds like you are doing all the right things to keep your mother comfortable. I think it's important for you to tell her that it's OK for her to let go. Reassure her that you'll be OK after she's gone. Tell her what a good mother she has been, and how much you've learned from her. Give her lots of time to rest.


Sat Jul 10, 2010 4:21 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: Feeling Unsure
Thanks Robin, I have tried to do that, but she always worried about me more than my siblings, I have always been "the sensitive one". She asked for my sister and she came this week and did that, let her know it was OK to let go and that she would be OK. I have this conflict in my soul about it. I don't want her to think I am giving up on her, and yet the whole reason I brought her home was so she could have peace and joy before her life was over, and a peaceful transition into the next life. I had a solid "intuitive" feeling about that when we brought her home. I haven't lost that sense, but I am questioning myself. I know I absolutely need to work through that to get back to my original intention. On a logical level I know what I see, I am grieving and I think that is alright. But I don't want my Mom to hang in there for me, how do I tell her I am strong enough to handle all of it?

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Sat Jul 10, 2010 5:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Feeling Unsure
When my dad died at home from melanoma I was his only caregiver, although my mother, sister and brother were there in the house, too, which gave me a feeling of support but no help in decisions, etc. What I sense with you is a bit of what I felt---overwhelmed by the responsibility of the whole situation and not trusting your judgment entirely, party due to stress and [in my case] lack of sleep. As a licensed RN I knew what I was doing, medically, and objectively knew it was right but felt so many doubts, nonetheless.

When my father finally passed--days after absence of food or fluids--I happened to have gone to bed for an hour, my brother and sister were up with him and I was distraught that I didn't get to 'tell him goodbye'. Doesn't make sense now, but it did then. But when I saw how peaceful he appeared--no more pain, no more injections, no more indignities--we were all so glad for him that his ordeal was over.

Trust your judgment, Nancy. You are a loving and devoted daughter. All those years of caring will guide you to make the right decisions for your mother.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 10, 2010 5:23 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Feeling Unsure
Nancy, So many emotions, your mom is so fortunate to have you by her side and you are also fortunate to have this time with your mom. It's very difficult but we know once they let go, they will be at peace.
My mother lived with us while she was dying from cancer, after several days without food or drink the hospice nurse said she wouldn't last much longer. I told my mother that she needed to do what was easiest for her, that we would take care of dad and we'd all be fine. Like Pat, I had been with mom for the entire day, one of our daughters came and climbed into bed with her. I ran back to work for 1/2 hr to close things up and while I was gone mom died in Amy's arms. I've often wondered if she felt at peace knowing that everyone would be OK.
My thoughts and prayer are with you at this time.
Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Jul 10, 2010 8:04 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: Feeling Unsure
Thanks Pat and Gerry,

I am I guess just trying to come to terms with all of this. There is still some denial on my part, I thought it was hope and not denial, but that is just ridiculous. Gerry you are right, so many emotions, I just want peace for my Mom.

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Sat Jul 10, 2010 11:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Feeling Unsure
Gerry, do you think our parents were both holding on for us and that's why they passed when we had taken a break? What Nancy said got me to wondering, since you had the same experience. Maybe they were hanging on for our sakes and as soon as we left the premises they let go.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 10, 2010 11:29 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 740
Location: LA
Post Re: Feeling Unsure
Dear Nancy, I sat where you are a mere seven months ago. For me it was my husband but you recite the same exact feelings and turmoil within as I suffered. My mind told me it was time and I was on automatic pilot allowing things to run their natural course with my entire body telling me he could not go..Oh how I rebelled, he has always been so alive, this could not be happening. I knew though when he took his little pill from his mouth and put it on the sheet, looked at the nurse straight in the face and told her, " Do not put any more medicines in my mouth" I knew he was ready to leave... I let him go. He slipped into a semi-coma soon after that and 36 hours later he continued on to Paridise. I sat with him and softly sang the little love songs he had heard from me during the past few years as I have tended to his needs. It was the last gift I could give him. Perhaps your mom is ready to slip away. Are you able to go with her as far as humanly possible and then release her gently?

I have studied so many different victim's reports of this LBD and I have come to believe that pneumonia is a blessing in disguise. The loved ones report the end as being peaceful, they just stop breathing. That is the way it was with Mr Bobby. No more struggling, no more bad dreams, no comfusion. He just fell asleep and did not wake up.

We do not know that the end is nearing for your mom but if she is resisting food along with the other symptoms you have cited, maybe it is time for you to follow her lead. It is the hardest thing you will ever do but we do know that we all have a birth, a life, and a death span. You want peace and comfort for her. I pray for you as you are doing everything you can to give her peace and comfort.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sun Jul 11, 2010 12:40 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Feeling Unsure
Pat, You may be right. I have 3 siblings but I was the closest to mom, she was TOUGH while I was growing up but as adults we were best friends. Amy is a firm believer of the here after and she and mom talked about it over the years. Thinking back, it does leave you wondering. Today is another day, when, or if, Frank goes before me, I'm sure I'll be looking back wondering a lot of thing. I'm just trying to handle things in a way that I won't beat myself up after and ask myself "why" did I do that or "why" didn't I???

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jul 11, 2010 7:27 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Feeling Unsure
My father was in a coma the last few days but I knew he could hear us. I read to him and sometimes just held his hand.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jul 11, 2010 8:35 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Feeling Unsure
Hi Nancy - I'm sending you a big hug of encouragement "over the airwaves" this morning. When you are feeling most confused, ask yourself if you're holding on for her or for you? If you haven't already, I'd suggest talking about any "unfinished business" you and your mom might have, and like everyone else has said here, tell her she has given you the strength and tools to go on without her and that you'll be fine. Being such a caring person, you obviously don't want her to continue to suffer for a long, long time.
My mom had been so clear about what she wanted and didn't want that it was much easier for me to deal with her coma and death than it is for me to deal with this slow, painful dementia death of my dad. I knew that she didn't want to be on advanced life support, and I was horrified when I saw her hooked up to all sorts of things, especially when the dr. and I figured out she was without O2 for at least 20 min. I tried to get them to unhook all her machines, but my dad had POA and was in total denial.
Everyone has to deal with this in their own way and you will find the strength let her go and move on. Take care of yourself and ask for as much support as you need at a very difficult time. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Jul 11, 2010 12:07 pm
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Re: Feeling Unsure
Hello all,

Having just lost my dad, I've experienced so many of the emotions you raise here. One of the things that hospice told us was that people who in life were private and needed to be in control would often pass unattended. We kept thinking we would miss it, but he allowed us to be there. I talked to my dad every dad, both out loud and silently, telling him that it was alright to let go, that we had mom's back, that we didn't want him to suffer. We called out to his dead friends and relatives to help him on his way. I often thought I senses their presence in the room. My dad believed in an afterlife and the most moving moment was when his minister came to read passages. As she started to leave my dad grabbed her hand with both of his and she stayed a while, talking to him. Hang in there Nancy. You are doing everything you can to help your mother pass peacefully.


Tue Jul 20, 2010 2:25 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: Feeling Unsure
Thank you Amanda, your post was incredibly reassuring to me as I am experiencing many of the same things. I really appreciate you and this forum.

Bless you all

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Tue Jul 20, 2010 9:02 pm
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