Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 If you are concerned about whether cancer may have returned, would you consider an autopsy? I think it would be helpful so that you know for sure she has LBD as well as any other physical problems, but I know it is expensive. --- stimtimminss wrote: > Mom is in palliative care. Her GI bleed is small, > but she is not eating since throwing up > coffee ground like substance last evening, hardly > drinking. Her vitals are amazing, so she > could hang in there for awhile. The director of > nursing today gave her 5 days if she stops > drinking. With her vitals and the fact that she > consumed a juice glass of liquid this > morning we could go on for a couple of weeks I > think. So the roller coaster continues. > So far this end seems comfortable. She is mainly in > a deep sleep, was aware when the > chaplain prayed over her this morning, face looking > like she wanted to cry. I am pretty > sure she knew I was there, but for the most, I just > let her sleep. She is breathing easily, > seems to be out of pain. They are now giving her > Tylenol by suppository. She didn't even > eat the ice cream I offered!!! I was sure that > would go down. She made sucking like > motions with her lips but couldn't seem to get her > mouth open for input, or the closed for > download, much less swallow to allow it to happen. > A huge question for me is why her face is so puffy > and flushed. That has been going on > for the past few weeks. Also, her feet are swollen. > I have to wonder if her cancer of 10 > years ago has returned instead of side effects from > her Mobicox. We will never know as I > will not put her through the invasive testing > required to find out. And to what end? > Thankfully the volunteer pianist for the chaplain is > a very dear and old friend. She stayed > with me for about 2 hours today as I sent my husband > off with his mother to continue > clearing out her house since FIL's demise 6 weeks > ago. > It's a very emotional time, but well timed as I > finished work for the summer yesterday. > > , 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 1g 3 times a day > Off Aricept since Feb./06 > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 If you are concerned about whether cancer may have returned, would you consider an autopsy? I think it would be helpful so that you know for sure she has LBD as well as any other physical problems, but I know it is expensive. --- stimtimminss wrote: > Mom is in palliative care. Her GI bleed is small, > but she is not eating since throwing up > coffee ground like substance last evening, hardly > drinking. Her vitals are amazing, so she > could hang in there for awhile. The director of > nursing today gave her 5 days if she stops > drinking. With her vitals and the fact that she > consumed a juice glass of liquid this > morning we could go on for a couple of weeks I > think. So the roller coaster continues. > So far this end seems comfortable. She is mainly in > a deep sleep, was aware when the > chaplain prayed over her this morning, face looking > like she wanted to cry. I am pretty > sure she knew I was there, but for the most, I just > let her sleep. She is breathing easily, > seems to be out of pain. They are now giving her > Tylenol by suppository. She didn't even > eat the ice cream I offered!!! I was sure that > would go down. She made sucking like > motions with her lips but couldn't seem to get her > mouth open for input, or the closed for > download, much less swallow to allow it to happen. > A huge question for me is why her face is so puffy > and flushed. That has been going on > for the past few weeks. Also, her feet are swollen. > I have to wonder if her cancer of 10 > years ago has returned instead of side effects from > her Mobicox. We will never know as I > will not put her through the invasive testing > required to find out. And to what end? > Thankfully the volunteer pianist for the chaplain is > a very dear and old friend. She stayed > with me for about 2 hours today as I sent my husband > off with his mother to continue > clearing out her house since FIL's demise 6 weeks > ago. > It's a very emotional time, but well timed as I > finished work for the summer yesterday. > > , 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 1g 3 times a day > Off Aricept since Feb./06 > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi June, Right now I don't really care what is taking Mom. End of life seems imminent. It has been such a long and stressful journey for her. I wonder, but don't feel the autopsy route is there for her. She didn't go there for my dad when he died, nor for my brother who died of brain cancer at age of 7, never mentioned wanting it done for her. Her life is spent and I will accept it as such. I always look at the variables but am willing to contemplate, not necessarily needing an answer. I appreciate your input. > > > Mom is in palliative care. Her GI bleed is small, > > but she is not eating since throwing up > > coffee ground like substance last evening, hardly > > drinking. Her vitals are amazing, so she > > could hang in there for awhile. The director of > > nursing today gave her 5 days if she stops > > drinking. With her vitals and the fact that she > > consumed a juice glass of liquid this > > morning we could go on for a couple of weeks I > > think. So the roller coaster continues. > > So far this end seems comfortable. She is mainly in > > a deep sleep, was aware when the > > chaplain prayed over her this morning, face looking > > like she wanted to cry. I am pretty > > sure she knew I was there, but for the most, I just > > let her sleep. She is breathing easily, > > seems to be out of pain. They are now giving her > > Tylenol by suppository. She didn't even > > eat the ice cream I offered!!! I was sure that > > would go down. She made sucking like > > motions with her lips but couldn't seem to get her > > mouth open for input, or the closed for > > download, much less swallow to allow it to happen. > > A huge question for me is why her face is so puffy > > and flushed. That has been going on > > for the past few weeks. Also, her feet are swollen. > > I have to wonder if her cancer of 10 > > years ago has returned instead of side effects from > > her Mobicox. We will never know as I > > will not put her through the invasive testing > > required to find out. And to what end? > > Thankfully the volunteer pianist for the chaplain is > > a very dear and old friend. She stayed > > with me for about 2 hours today as I sent my husband > > off with his mother to continue > > clearing out her house since FIL's demise 6 weeks > > ago. > > It's a very emotional time, but well timed as I > > finished work for the summer yesterday. > > > > , 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 1g 3 times a day > > Off Aricept since Feb./06 > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 - please know that you and your mom are in my thoughts and prayers during this difficult time. I wish you continued peace as you spend time with your mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 , Sending you and your mom strength. You mentioned that her face and feet are puffy? How is her bp? Courage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 That's wonderful! More power to her. . At any rate, the GI bleed has stopped, she is getting stronger each day. Refusing the ._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 , I hope she ges very peacefully, my dad did. His bp kept dropping until he bottomed out. He went with his hands pointing to bhreaven and then like he was reaching out for my grandmothers hand Who died 25 days before daddy did! Take care of yourself during this timen, tell her yoiu love her and that it is okay to rest now! It will break your heart to say that but she mneeds you to tell her you and your family will be ok! Hugs an prayers and strength xoming your way. Sharon M Sent from my BlackBerry® wireless device Mom today Mom is in palliative care. Her GI bleed is small, but she is not eating since throwing up coffee ground like substance last evening, hardly drinking. Her vitals are amazing, so she could hang in there for awhile. The director of nursing today gave her 5 days if she stops drinking. With her vitals and the fact that she consumed a juice glass of liquid this morning we could go on for a couple of weeks I think. So the roller coaster continues. So far this end seems comfortable. She is mainly in a deep sleep, was aware when the chaplain prayed over her this morning, face looking like she wanted to cry. I am pretty sure she knew I was there, but for the most, I just let her sleep. She is breathing easily, seems to be out of pain. They are now giving her Tylenol by suppository. She didn't even eat the ice cream I offered!!! I was sure that would go down. She made sucking like motions with her lips but couldn't seem to get her mouth open for input, or the closed for download, much less swallow to allow it to happen. A huge question for me is why her face is so puffy and flushed. That has been going on for the past few weeks. Also, her feet are swollen. I have to wonder if her cancer of 10 years ago has returned instead of side effects from her Mobicox. We will never know as I will not put her through the invasive testing required to find out. And to what end? Thankfully the volunteer pianist for the chaplain is a very dear and old friend. She stayed with me for about 2 hours today as I sent my husband off with his mother to continue clearing out her house since FIL's demise 6 weeks ago. It's a very emotional time, but well timed as I finished work for the summer yesterday. , 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 1g 3 times a day Off Aricept since Feb./06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 sandra there is nothing wrong with praying for peace for your mom, we did that with daddy, as we saw him deteriote to a nothing life, laying in bed with a permantently dislocated hip, unable to get out of bed, and having diffiuclty communicatiing. so dont berate yourself for praying for a peaceful ending. i frequently prayed for His will to be done quickly, so as not to make my daddys life any less productive then it already was. hugs, sharonm -- Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away ---- stimtimminss wrote: Thank you , The GI bleed as of today seems to be stopping, vitals remain good, Mom seems to be rallying once again. She got one eye open today when I greeted her, cried on seeing me, the first time in 4 months I have seen even 1 eye open. She mumbled something I could not understand, so I decided she was surfaced enough to explain that she had had an internal bleed and seemed to be recovering. She cried again. On asking, she could say yes to are you comfortable? She had eaten all her breakfast, pureed with thickened fluids, then nothing for lunch. Offerings seemed to be spit back out, by choice or as described recently here, with tongue thrusting? Eyes closed, no interaction other than that. Food also just dribbled back out of her mouth. I am at peace, as much as I can be, actually wishing for the end for my mom as heartless as that may sound, as long as she seems comfortable. It is so much easier when she is not aware or responding! I will check soon to see if she has taken in any hydration with supper. With the amount she is taking in, the end could be months. If she rallies more, we are back to probably a couple of years. What a ride! Meanwhile I am there every day to get a baseline on what is going on. The dietician today spent 40 minutes talking, offered me room overnight if I need it. Yesterday the recreation director shared with me, first of anyone, that her 16 year old daughter is pregnant. Talk about feeling my mom is in a sharing environment! I've been offered food, drinks, continuously. I have so much support there, I just hope Mom can medically end her life there. , 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 1g 3 times a day Off Aricept since Feb./06 On " gentle care " July 30/06 > > , > > I hope your mother continues to be comfortable. I know this is a > difficult time for you, even though you seem to be at peace. We are > both fortunate to have had our parents be part of our lives for so > long...I only wish that the last few years were LBD free. But none > the less, there are a lot of experiences and love that was expressed > as a result of going through this illness. > > My thoughts are with you. Take care. > > > Daughter of Bill, 91 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 the erratic bp you are talking about is called orthostatic blood pressure. dad had severe fluctuations towards theend. and on the morning he died, his bp jiust started dropping and if just didnt bounce back up. it is very common in lbd patients. i am glad the gi bleed is under control. hugs, sharon m -- Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away ---- stimtimminss wrote: BP of course is very erratic, 150/47-95/45-136/65. It's all over the map, not ideal. The puffiness and flushing do seem better now with the " gentle care " (bed rest) she is on rather than being sling lifted into her wheelchair every day. Perhaps going off the Mobicox has helped. At any rate, the GI bleed has stopped, she is getting stronger each day. Refusing the thickened fluids, choking on regular fluids, even her chocolate milk, drinking it if thickened slightly. She's not out of the woods yet with hydration, but is eating, more responsive each day. For me the most emotional pull is that for the last 2 days she has opened 1 eye to look at me and tried to say a number of words strung together that I just can't make out. Then we both end up crying. The mumble was less jumbled today so we will try again tomorrow I hope. , 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. Eltroxin, Tylenol 1g 3 times a day Off Aricept since Feb./06 On " gentle care " June 30/06, spoon-fed pureed foods, thickened fluids > > , > > Sending you and your mom strength. You mentioned that her face and feet > are puffy? How is her bp? > Courage > Quote Link to comment Share on other sites More sharing options...
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