Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Stevie, my heart is with you. This has got to be terribly hard. I do hope you can get some help, to let you get some badly needed rest. I used to get up many times at night with my babies, but hey, I was still under 30 years old. Healthy and vigorous. Any older than that and it is too hard. I sure hope you get so reprieve. Imogene In a message dated 5/19/2006 3:33:13 PM Central Daylight Time, sanclown@... writes: An update from Stevie, via Sandie: Mr. B is on a very slow downhill stage and we are getting up 2-3 times a night because he is so uncomfortable. We are thinking about 24 hours care as I am getting exhausted again and find I have no time for anything.. including the computer. I haven't been able to go to the web site and see what is happening. I will try to do that before the Social Worker and health aide come today. Every day there is something. Mr. B's lungs have diminished quite a bit and he is " shallow breathing " most of the time. The nurse can hear fluid in his lower quadrants. His chest, hands and feet are a darker shade of blue and he is on oxygen most of the time and is eating less each day but still interested in what is going on around him. He is fighting a bed sore on his heal that has split from the inside out, and that is making him quite uncomfortable. He has also developed some kind of fungus " in his finger nail beds because his circulation is so bad.....but.. like I said before, he prevails through all of this and apparently is going to fight it till the end! Such a sad thing to watch because he is so aware of what is happening to him and gets very depressed. We keep the humour going and that's about all we can do for now. Stevie [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Stevie, My heart breaks for both you and Mr. B. I hope you can get the 24 hour support you both need, especially to help YOU through this difficult time. I have just gone through the end of life stages with my FIL and can appreciate how draining and even disorienting it can be. And he was in palliative care, not in our home! Certainly sleep was disrupted, but by thoughts, emotions, memories, expectation of the phone call, rather than physically also having to get up to give care. You are truly an inspiration. As an aside, FIL also received oxygen to the end. A nurse went into his room after a few days off and was upset to find the setting at 10, to sustain life. In palliative care it should have been at 2 for comfort only. FIL was not there in his journey until he was unresponsive but I had not thought out that there would be different settings for different intent. Tell him his Canadian bear hugger is with him in thought and spirit. I am sure your humour, love and genuine caring is still very important to him. Did the lilies bloom for him? I truly hope so but if not, a Lily of the Valley room spray might give him a lift. Sent with love to you both, > > An update from Stevie, via Sandie: > > Mr. B is on a very slow downhill stage and we are getting up 2-3 times a > night because he is so uncomfortable. We are thinking about 24 hours care > as I am getting exhausted again and find I have no time for anything.. > including the computer. I haven't been able to go to the web site and see > what is happening. I will try to do that before the Social Worker and > health aide come today. Every day there is something. Mr. B's lungs have > diminished quite a bit and he is " shallow breathing " most of the time. The > nurse can hear fluid in his lower quadrants. His chest, hands and feet are > a darker shade of blue and he is on oxygen most of the time and is eating > less each day but still interested in what is going on around him. He is > fighting a bed sore on his heal that has split from the inside out, and that > is making him quite uncomfortable. He has also developed some kind of > fungus " in his finger nail beds because his circulation is so bad.....but.. > like I said before, he prevails through all of this and apparently is going > to fight it till the end! Such a sad thing to watch because he is so aware > of what is happening to him and gets very depressed. We keep the humour > going and that's about all we can do for now. > > Stevie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Hey Stevie, Sorry to hear you both are going through such a tough time. My heart aches for you and Mr. B. I too hope that help will come soon for you. My thoughts and prayers are with you. Tori -- In LBDcaregivers , Iward27663@... wrote: > > > Stevie, my heart is with you. This has got to be terribly hard. I do hope > you can get some help, to let you get some badly needed rest. > > I used to get up many times at night with my babies, but hey, I was still > under 30 years old. Healthy and vigorous. Any older than that and it is too > hard. > > I sure hope you get so reprieve. > Imogene > > > In a message dated 5/19/2006 3:33:13 PM Central Daylight Time, > sanclown@... writes: > > An update from Stevie, via Sandie: > > Mr. B is on a very slow downhill stage and we are getting up 2-3 times a > night because he is so uncomfortable. We are thinking about 24 hours care > as I am getting exhausted again and find I have no time for anything.. > including the computer. I haven't been able to go to the web site and see > what is happening. I will try to do that before the Social Worker and > health aide come today. Every day there is something. Mr. B's lungs have > diminished quite a bit and he is " shallow breathing " most of the time. The > nurse can hear fluid in his lower quadrants. His chest, hands and feet are > a darker shade of blue and he is on oxygen most of the time and is eating > less each day but still interested in what is going on around him. He is > fighting a bed sore on his heal that has split from the inside out, and that > is making him quite uncomfortable. He has also developed some kind of > fungus " in his finger nail beds because his circulation is so bad.....but.. > like I said before, he prevails through all of this and apparently is going > to fight it till the end! Such a sad thing to watch because he is so aware > of what is happening to him and gets very depressed. We keep the humour > going and that's about all we can do for now. > > Stevie > > [Non-text portions of this message have been removed] > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Sandie, Thank you so much for posting this for me. This morning I showed Mr. B the pictures you sent of your Lilies, and he was doing " Showtime " like the LOtV's had arrived again! He started talking (garbling) about his Lilies and he was so brave and determined and positive that he was joking and laughing when the Hospice healthcare-giver came to give him a shower. After his shower, he bravely WALKED (with all of our help!) back to his blue chair and sat down exhausted. He sat there for a minute like he was going to say something profound, so we all stood still in anticipation.....then.....he clearly said, " Someone shoot me " , and we all burst out laughing. He tries so hard to be well! I told him I would give him a hug instead and said, " At least we have the smiles and laughter " and then he did say something profound...he said, " Till the end " . This is what makes Mr. B a wonderful man. I love you all for the " Lily of the Valley " effort and will forever hold that moment dear to my heart. I thank you, and Mr. B thanks his wonderful " friends on the computer " . Much Peace, Stevie * * * * * * > > An update from Stevie, via Sandie: > > Mr. B is on a very slow downhill stage and we are getting up 2-3 times a > night because he is so uncomfortable. We are thinking about 24 hours care > as I am getting exhausted again and find I have no time for anything.. > including the computer. I haven't been able to go to the web site and see > what is happening. I will try to do that before the Social Worker and > health aide come today. Every day there is something. Mr. B's lungs have > diminished quite a bit and he is " shallow breathing " most of the time. The > nurse can hear fluid in his lower quadrants. His chest, hands and feet are > a darker shade of blue and he is on oxygen most of the time and is eating > less each day but still interested in what is going on around him. He is > fighting a bed sore on his heal that has split from the inside out, and that > is making him quite uncomfortable. He has also developed some kind of > fungus " in his finger nail beds because his circulation is so bad.....but.. > like I said before, he prevails through all of this and apparently is going > to fight it till the end! Such a sad thing to watch because he is so aware > of what is happening to him and gets very depressed. We keep the humour > going and that's about all we can do for now. > > Stevie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 ! Thank you so much for your concern! I will tell Mr. B his " Canadian bear hugger " is with him. That is so cute! He can't believe someone from Canada is thinking about him.......of course he has no idea how I talk to you all on my computer either! He loves the Lilies and yes they did bloom. You would have thought he grew them himself the way he went on talking about them. It was quite a moment and I think it actually perked him up (read my previous post). I am so sorry to hear about your FIL but am glad that he is at Peace. How is your Mom doing? I think of her often and wonder what she is thinking? Especially after watching Mr. B struggle each day with his feelings. I send you and your Mom the best! Much love and prayers to you, Stevie * * * * * > > Stevie, > My heart breaks for both you and Mr. B. I hope you can get the 24 hour support you both > need, especially to help YOU through this difficult time. I have just gone through the end > of life stages with my FIL and can appreciate how draining and even disorienting it can be. > And he was in palliative care, not in our home! Certainly sleep was disrupted, but by > thoughts, emotions, memories, expectation of the phone call, rather than physically also > having to get up to give care. You are truly an inspiration. > As an aside, FIL also received oxygen to the end. A nurse went into his room after a few > days off and was upset to find the setting at 10, to sustain life. In palliative care it should > have been at 2 for comfort only. FIL was not there in his journey until he was > unresponsive but I had not thought out that there would be different settings for different > intent. > Tell him his Canadian bear hugger is with him in thought and spirit. I am sure your > humour, love and genuine caring is still very important to him. > Did the lilies bloom for him? I truly hope so but if not, a Lily of the Valley room spray > might give him a lift. > Sent with love to you both, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Thank you so much Imogene! I have a caregiver during the day and he is wonderful. I still have night duty so my husband won't have to get up, but the caregiver will start staying 24 hours at a moments notice. These past few days Mr. B has been a slight bit better? I don't know if it's because of the Lilies or what? Hospice is amazed at him because by all accounts he should not be here. They want to know what I am giving him? LOL We take it day by day and keep the humour up and meds down. Thank you again and I send you my best, Stevie * ** * * > > > Stevie, my heart is with you. This has got to be terribly hard. I do hope > you can get some help, to let you get some badly needed rest. > > I used to get up many times at night with my babies, but hey, I was still > under 30 years old. Healthy and vigorous. Any older than that and it is too > hard. > > I sure hope you get so reprieve. > Imogene > > > In a message dated 5/19/2006 3:33:13 PM Central Daylight Time, > sanclown@... writes: > > An update from Stevie, via Sandie: > > Mr. B is on a very slow downhill stage and we are getting up 2-3 times a > night because he is so uncomfortable. We are thinking about 24 hours care > as I am getting exhausted again and find I have no time for anything.. > including the computer. I haven't been able to go to the web site and see > what is happening. I will try to do that before the Social Worker and > health aide come today. Every day there is something. Mr. B's lungs have > diminished quite a bit and he is " shallow breathing " most of the time. The > nurse can hear fluid in his lower quadrants. His chest, hands and feet are > a darker shade of blue and he is on oxygen most of the time and is eating > less each day but still interested in what is going on around him. He is > fighting a bed sore on his heal that has split from the inside out, and that > is making him quite uncomfortable. He has also developed some kind of > fungus " in his finger nail beds because his circulation is so bad.....but.. > like I said before, he prevails through all of this and apparently is going > to fight it till the end! Such a sad thing to watch because he is so aware > of what is happening to him and gets very depressed. We keep the humour > going and that's about all we can do for now. > > Stevie > > [Non-text portions of this message have been removed] > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Hello Tori, How are YOU doing? Thank you so much for your thoughts and prayers. I have been wondering how you and and April's LO's are doing. I will read on and hope you are all doing well. Much Peace, Stevie * * * * * > > Hey Stevie, > > Sorry to hear you both are going through such a tough time. My > heart aches for you and Mr. B. I too hope that help will come soon > for you. My thoughts and prayers are with you. > > Tori > > > -- In LBDcaregivers , Iward27663@ wrote: > > > > > > Stevie, my heart is with you. This has got to be terribly hard. I > do hope > > you can get some help, to let you get some badly needed rest. > > > > I used to get up many times at night with my babies, but hey, I > was still > > under 30 years old. Healthy and vigorous. Any older than that and > it is too > > hard. > > > > I sure hope you get so reprieve. > > Imogene > > > > > > In a message dated 5/19/2006 3:33:13 PM Central Daylight Time, > > sanclown@ writes: > > > > An update from Stevie, via Sandie: > > > > Mr. B is on a very slow downhill stage and we are getting up 2-3 > times a > > night because he is so uncomfortable. We are thinking about 24 > hours care > > as I am getting exhausted again and find I have no time for > anything.. > > including the computer. I haven't been able to go to the web > site and see > > what is happening. I will try to do that before the Social > Worker and > > health aide come today. Every day there is something. Mr. B's > lungs have > > diminished quite a bit and he is " shallow breathing " most of the > time. The > > nurse can hear fluid in his lower quadrants. His chest, hands > and feet are > > a darker shade of blue and he is on oxygen most of the time and > is eating > > less each day but still interested in what is going on around > him. He is > > fighting a bed sore on his heal that has split from the inside > out, and that > > is making him quite uncomfortable. He has also developed some > kind of > > fungus " in his finger nail beds because his circulation is so > bad.....but.. > > like I said before, he prevails through all of this and > apparently is going > > to fight it till the end! Such a sad thing to watch because he > is so aware > > of what is happening to him and gets very depressed. We keep > the humour > > going and that's about all we can do for now. > > > > Stevie > > > > [Non-text portions of this message have been removed] > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Hello Dena, Thank you very much for your thoughts and prayers. Everyday brings something new to think about. It is amazing when I have had enough rest to think about how this is all playing out. The outcome is inevitable, the time frame is unknown. He surprises me every day. There are so many good thoughts and prayers sent our way from this group that our house illuminates at night when the lights are out! Thank you so much for your concern. I hope your Mom is doing well in the NH? Much love and Peace to you, Stevie * * * * * > > Dear Stevie > > My heart is breaking for you and Mr. B. It is > miserable to watch and I am sure much worse to live. I > am not sure exactly what to pray for besides rest and > peace for you both. I hope you are feeling better by > now and got through the weekend okay. I will keep you > in my thoughts and prayers. > > Dena > > --- Sandie wrote: > > > An update from Stevie, via Sandie: > > > > Mr. B is on a very slow downhill stage and we are > > getting up 2-3 times a > > night because he is so uncomfortable. We are > > thinking about 24 hours care > > as I am getting exhausted again and find I have no > > time for anything.. > > including the computer. I haven't been able to go > > to the web site and see > > what is happening. I will try to do that before the > > Social Worker and > > health aide come today. Every day there is > > something. Mr. B's lungs have > > diminished quite a bit and he is " shallow breathing " > > most of the time. The > > nurse can hear fluid in his lower quadrants. His > > chest, hands and feet are > > a darker shade of blue and he is on oxygen most of > > the time and is eating > > less each day but still interested in what is going > > on around him. He is > > fighting a bed sore on his heal that has split from > > the inside out, and that > > is making him quite uncomfortable. He has also > > developed some kind of > > fungus " in his finger nail beds because his > > circulation is so bad.....but.. > > like I said before, he prevails through all of this > > and apparently is going > > to fight it till the end! Such a sad thing to watch > > because he is so aware > > of what is happening to him and gets very depressed. > > We keep the humour > > going and that's about all we can do for now. > > > > Stevie > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Okay.....now I need a tissue! Jan! What a wonderful offer! Thank you so much! Yes, I am right next to Laguna Hills and if you ever visit your friend please let me know and you can meet Mr. B. I'm sure he will be walking by then and we all can go to lunch! LOL He would be amazed to see one of his " computer friends " show up at the door! Oh, how wonderful for you to offer me a rest. Maybe a drive up the Coast? Let me know if you are ever in the area. We will manage a wonderful visit at the very least. I am so happy to hear that Jim is settled into a good NH. I can feel the relief in your email. Thank you again for your generous offer and please let me know if you come to So. Cal. Love and hugs and Peace to you, Stevie * * * * * > > Hi Stevie, > I am so sorry to hear of your struggles with Mr. B. It > saddens me to hear how much he has progressed into the > disease. My hope is for Mr. B not to suffer for much > longer or you. > Stevie, I am in the San Francisco Bay Area. It does > not take much for me to fly down there. Jim is doing > very well at the nh and is getting all the proper > care. He is walking with a walker again and his > coloring and weight are good and they keep him > stimulated with all kinds of activity geared to his > ability, he is getting plenty of attention. > Stevie, I am not working in the summer. I have all > summer off and I feel secure with Jim where he is at > now. If you would like any time off to relax, I would > love to give you that. Starting in the second week of > June to the end of August. Are you anywhere near > Laguna Hills? My very good friend lives there and I > could stay with her and be available for you when you > need a break. Please let me know and I will be there > in a NY minute. NO JOKE. I am not out of the cargiving > mode yet. > Huge Hugs, Jan > > > --- Dena LEAVITT wrote: > > > Dear Stevie > > > > My heart is breaking for you and Mr. B. It is > > miserable to watch and I am sure much worse to live. > > I > > am not sure exactly what to pray for besides rest > > and > > peace for you both. I hope you are feeling better by > > now and got through the weekend okay. I will keep > > you > > in my thoughts and prayers. > > > > Dena > > > > --- Sandie wrote: > > > > > An update from Stevie, via Sandie: > > > > > > Mr. B is on a very slow downhill stage and we are > > > getting up 2-3 times a > > > night because he is so uncomfortable. We are > > > thinking about 24 hours care > > > as I am getting exhausted again and find I have no > > > time for anything.. > > > including the computer. I haven't been able to go > > > to the web site and see > > > what is happening. I will try to do that before > > the > > > Social Worker and > > > health aide come today. Every day there is > > > something. Mr. B's lungs have > > > diminished quite a bit and he is " shallow > > breathing " > > > most of the time. The > > > nurse can hear fluid in his lower quadrants. His > > > chest, hands and feet are > > > a darker shade of blue and he is on oxygen most of > > > the time and is eating > > > less each day but still interested in what is > > going > > > on around him. He is > > > fighting a bed sore on his heal that has split > > from > > > the inside out, and that > > > is making him quite uncomfortable. He has also > > > developed some kind of > > > fungus " in his finger nail beds because his > > > circulation is so bad.....but.. > > > like I said before, he prevails through all of > > this > > > and apparently is going > > > to fight it till the end! Such a sad thing to > > watch > > > because he is so aware > > > of what is happening to him and gets very > > depressed. > > > We keep the humour > > > going and that's about all we can do for now. > > > > > > Stevie > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Dear Gerry, Thank you so much for your wonderful words. You are so right about this support group. Before I found this message board, I was at the end...not like I am now, I am just plain tired now...I almost gave up then because no one would listen to me about Mr. B's health or that I thought he had LBD instead of Parkinson's. I had no hope for him, or me, because he was reacting so badly to meds that his doctor was " trying " on him. Then, I found that I was not alone. I couldn't believe someone else in this world actually KNEW what I was going through! I thank everyone on this message board from the bottom of my heart, and I keep everyone's LO's in mind and prayers everyday for their sufferings with this insidious disease. I am also grateful for the members who have stayed after their LO's passed, like you Gerry, and lovingly held the rest of us together as we travel the same crazy path you have gone. Thank you again for a wonderful compliment and thank you for being here. Much Peace to you, Stevie * * * * * > Dear Stevie & Jan- > I am moved by the caring demonstrated by both you, Stevie and Jan. Stevie, you have taken such wonderful care of Mr. B. You always said and did the right things for for your Uncle. I know he is such a dear person, but your are too. Jan, you just got Jim settled in the nh and the nightmare that you have been living seems to be settling down somewhat. Now, the good person that you are, have volunteered to go that extra mile and help Stvie with Mr. B. You two are just too wonderful and admire you so much. Where else, but this support group would we find such empathetic people. My hats off to you two ladies. > Sincerely, > Gerry Deverell > Wilmington, De. > Daughter & Caregiver of Dick Deverell, who died on 9/11/05 after more than a 4 yr. battle with LBD. > Re: Update from Stevie > > > Hi Stevie, > I am so sorry to hear of your struggles with Mr. B. It > saddens me to hear how much he has progressed into the > disease. My hope is for Mr. B not to suffer for much > longer or you. > Stevie, I am in the San Francisco Bay Area. It does > not take much for me to fly down there. Jim is doing > very well at the nh and is getting all the proper > care. He is walking with a walker again and his > coloring and weight are good and they keep him > stimulated with all kinds of activity geared to his > ability, he is getting plenty of attention. > Stevie, I am not working in the summer. I have all > summer off and I feel secure with Jim where he is at > now. If you would like any time off to relax, I would > love to give you that. Starting in the second week of > June to the end of August. Are you anywhere near > Laguna Hills? My very good friend lives there and I > could stay with her and be available for you when you > need a break. Please let me know and I will be there > in a NY minute. NO JOKE. I am not out of the cargiving > mode yet. > Huge Hugs, Jan > > > --- Dena LEAVITT wrote: > > > Dear Stevie > > > > My heart is breaking for you and Mr. B. It is > > miserable to watch and I am sure much worse to live. > > I > > am not sure exactly what to pray for besides rest > > and > > peace for you both. I hope you are feeling better by > > now and got through the weekend okay. I will keep > > you > > in my thoughts and prayers. > > > > Dena > > > > --- Sandie wrote: > > > > > An update from Stevie, via Sandie: > > > > > > Mr. B is on a very slow downhill stage and we are > > > getting up 2-3 times a > > > night because he is so uncomfortable. We are > > > thinking about 24 hours care > > > as I am getting exhausted again and find I have no > > > time for anything.. > > > including the computer. I haven't been able to go > > > to the web site and see > > > what is happening. I will try to do that before > > the > > > Social Worker and > > > health aide come today. Every day there is > > > something. Mr. B's lungs have > > > diminished quite a bit and he is " shallow > > breathing " > > > most of the time. The > > > nurse can hear fluid in his lower quadrants. His > > > chest, hands and feet are > > > a darker shade of blue and he is on oxygen most of > > > the time and is eating > > > less each day but still interested in what is > > going > > > on around him. He is > > > fighting a bed sore on his heal that has split > > from > > > the inside out, and that > > > is making him quite uncomfortable. He has also > > > developed some kind of > > > fungus " in his finger nail beds because his > > > circulation is so bad.....but.. > > > like I said before, he prevails through all of > > this > > > and apparently is going > > > to fight it till the end! Such a sad thing to > > watch > > > because he is so aware > > > of what is happening to him and gets very > > depressed. > > > We keep the humour > > > going and that's about all we can do for now. > > > > > > Stevie > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Thank you so much ! How is your Mom? I still think of the beautiful pictures you have posted in your album and then I remember how dashing Mr. B used to look when we would go out to dinner, not long ago. Such memories to behold. Thank you for your thoughts and prayers. I send more your way, Stevie * * * * * > > Stevie - Please know that you and Mr. B are in my thoughts and > prayers. You've been wonderful to him - and he knows it. > > > > > > An update from Stevie, via Sandie: > > > > Mr. B is on a very slow downhill stage and we are getting up 2-3 > times a > > night because he is so uncomfortable. We are thinking about 24 > hours care > > as I am getting exhausted again and find I have no time for > anything.. > > including the computer. I haven't been able to go to the web site > and see > > what is happening. I will try to do that before the Social Worker > and > > health aide come today. Every day there is something. Mr. B's > lungs have > > diminished quite a bit and he is " shallow breathing " most of the > time. The > > nurse can hear fluid in his lower quadrants. His chest, hands and > feet are > > a darker shade of blue and he is on oxygen most of the time and is > eating > > less each day but still interested in what is going on around him. > He is > > fighting a bed sore on his heal that has split from the inside out, > and that > > is making him quite uncomfortable. He has also developed some kind > of > > fungus " in his finger nail beds because his circulation is so > bad.....but.. > > like I said before, he prevails through all of this and apparently > is going > > to fight it till the end! Such a sad thing to watch because he is > so aware > > of what is happening to him and gets very depressed. We keep the > humour > > going and that's about all we can do for now. > > > > Stevie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Hi Stevie, It is so good to hear back from you and that Mr. B has rallied to a degree and is still able to do showtime! You are both amazing! Your love and sense of humour certainly have got to have a lot to do to warrant his incredible staying power. I thought I was losing Mom a couple of months ago as she was eating and drinking little. I would try feeding her and the food would just dribble back out of her mouth. The decline was so rapid that I had her tested for a UTI, positive, she was treated and now is back to eating and drinking well. I know she knows me when I'm there, even though it has been months again since I've seen her eyes open. She may or may not respond to questions. I usually take her to the inhouse church service and often, even though she appears to be asleep, something will trigger tears. She claims she is comfortable, which is about all I can ask at this point. I guess a sign of her continued and extremely slow demise is the request by staff for tops that open down the back. Her increasing rigidity makes daily care more and more difficult. We have had to up her Tylenol to make ease of care better for her. So now I try to alter at least a top a day until they are done. Her left foot and ankle are swelling a bit, despite raised legs and loose sheep wool slippers, loose clothing. Her face is full, healthy looking but I have to wonder if she is retaining fluid there as well. So we continue Stevie, not knowing from day to day what to expect. Staff may say, " Yesterday her eyes were open and we had a good conversation " , or " She cried with morning care " . Most of the time her eyes are closed, mouth open, tongue out, drooling. She may surface quickly or with great effort on my part to get her awake. At least I can still get her to the surface. As as mentioned, I often wonder if she is in a world of hallucinations and delusions she can't share. Her memory is short, thankfully in that respect, but I am concerned at the world she is living in behind those closed eyes. Bear hugs all around! , Oakville Ont. Mom 92, 12 1/2 years " Parkinsons " 3 1/2 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give up her licence 6 years ago. Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of days behind closed eyes. Eltroxin, Tylenol 500 mg 3-4 times a day Off Aricept since Feb./06 > > ! > > Thank you so much for your concern! I will tell Mr. B his " Canadian > bear hugger " is with him. That is so cute! He can't believe someone > from Canada is thinking about him.......of course he has no idea how > I talk to you all on my computer either! He loves the Lilies and yes > they did bloom. You would have thought he grew them himself the way > he went on talking about them. It was quite a moment and I think it > actually perked him up (read my previous post). > > I am so sorry to hear about your FIL but am glad that he is at Peace. > > How is your Mom doing? I think of her often and wonder what she is > thinking? Especially after watching Mr. B struggle each day with his > feelings. > > I send you and your Mom the best! > > Much love and prayers to you, Stevie > > * * * * * > > > > > > Stevie, > > My heart breaks for both you and Mr. B. I hope you can get the 24 > hour support you both > > need, especially to help YOU through this difficult time. I have > just gone through the end > > of life stages with my FIL and can appreciate how draining and even > disorienting it can be. > > And he was in palliative care, not in our home! Certainly sleep > was disrupted, but by > > thoughts, emotions, memories, expectation of the phone call, rather > than physically also > > having to get up to give care. You are truly an inspiration. > > As an aside, FIL also received oxygen to the end. A nurse went > into his room after a few > > days off and was upset to find the setting at 10, to sustain life. > In palliative care it should > > have been at 2 for comfort only. FIL was not there in his journey > until he was > > unresponsive but I had not thought out that there would be > different settings for different > > intent. > > Tell him his Canadian bear hugger is with him in thought and > spirit. I am sure your > > humour, love and genuine caring is still very important to him. > > Did the lilies bloom for him? I truly hope so but if not, a Lily > of the Valley room spray > > might give him a lift. > > Sent with love to you both, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 ....I am resending this response because I don't think it posted. Dear Dena! I have been at this computer for over three or four hours and have answered Mr. B's bell two times now. When I went down to see what he needed I told him about his friends on the computer and he was smiling so much that he changed his mind about putting on the oxygen! Thank you so much for your wonderful offer! You should come visit anyway. Sometimes going for a cup of coffee would be more than a treat. Thank you so much and please let me know if you want to come visit. I am happy that you were able to place your Mom in a NH. It would be interesting to visit and compare these two stages of LBD. Thank you again Dena, and email me if you are up to coming out to the Beach. Much love and Peace, Stevie * * * * * > > Hi Stevie > > This goes for me too. I am about 45 minutes from you > and I would be more than happy to help out. So at the > very least you can get the much deserved rest that you > need to keep going. My mom is at the stage that she > does not know if I am there or not. I still visit > every day, but I usually ask myself on the way home if > it did any good or not. Anyway, PLEASE, e-mail me > directly with address or phone number and I will be > more than happy to help out. It is NOT too much to > ask, so please consider it. It would be nice to meet > someone face to face who is going through the same > situation that I am in also. As Jan stated this is NO > JOKE. We all care about you and Mr. B. > > Dena > > --- Janet Colello wrote: > > > Hi Stevie, > > I am so sorry to hear of your struggles with Mr. B. > > It > > saddens me to hear how much he has progressed into > > the > > disease. My hope is for Mr. B not to suffer for much > > longer or you. > > Stevie, I am in the San Francisco Bay Area. It does > > not take much for me to fly down there. Jim is doing > > very well at the nh and is getting all the proper > > care. He is walking with a walker again and his > > coloring and weight are good and they keep him > > stimulated with all kinds of activity geared to his > > ability, he is getting plenty of attention. > > Stevie, I am not working in the summer. I have all > > summer off and I feel secure with Jim where he is at > > now. If you would like any time off to relax, I > > would > > love to give you that. Starting in the second week > > of > > June to the end of August. Are you anywhere near > > Laguna Hills? My very good friend lives there and I > > could stay with her and be available for you when > > you > > need a break. Please let me know and I will be there > > in a NY minute. NO JOKE. I am not out of the > > cargiving > > mode yet. > > Huge Hugs, Jan > > > > > > --- Dena LEAVITT wrote: > > > > > Dear Stevie > > > > > > My heart is breaking for you and Mr. B. It is > > > miserable to watch and I am sure much worse to > > live. > > > I > > > am not sure exactly what to pray for besides rest > > > and > > > peace for you both. I hope you are feeling better > > by > > > now and got through the weekend okay. I will keep > > > you > > > in my thoughts and prayers. > > > > > > Dena > > > > > > --- Sandie wrote: > > > > > > > An update from Stevie, via Sandie: > > > > > > > > Mr. B is on a very slow downhill stage and we > > are > > > > getting up 2-3 times a > > > > night because he is so uncomfortable. We are > > > > thinking about 24 hours care > > > > as I am getting exhausted again and find I have > > no > > > > time for anything.. > > > > including the computer. I haven't been able to > > go > > > > to the web site and see > > > > what is happening. I will try to do that before > > > the > > > > Social Worker and > > > > health aide come today. Every day there is > > > > something. Mr. B's lungs have > > > > diminished quite a bit and he is " shallow > > > breathing " > > > > most of the time. The > > > > nurse can hear fluid in his lower quadrants. > > His > > > > chest, hands and feet are > > > > a darker shade of blue and he is on oxygen most > > of > > > > the time and is eating > > > > less each day but still interested in what is > > > going > > > > on around him. He is > > > > fighting a bed sore on his heal that has split > > > from > > > > the inside out, and that > > > > is making him quite uncomfortable. He has also > > > > developed some kind of > > > > fungus " in his finger nail beds because his > > > > circulation is so bad.....but.. > > > > like I said before, he prevails through all of > > > this > > > > and apparently is going > > > > to fight it till the end! Such a sad thing to > > > watch > > > > because he is so aware > > > > of what is happening to him and gets very > > > depressed. > > > > We keep the humour > > > > going and that's about all we can do for now. > > > > > > > > Stevie > > > > > > > > [Non-text portions of this message have been > > > > removed] > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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