Well, the post I have been dreading is here. Doug will be leaving home soon - onto the biggest part he will ever play - soon he will be directing the heavens. Jean has been by his side since this am. Sally and John stopped in and that was such a wonderful thing - as Doug actually showed signs of knowing they were there!
Mike came by after work - he has been so wonderful. Last evening he brought Doug cable for his TV and tonight when he came and saw that Doug was in an end of life sleep - he actually went all the way back to Albany to pick up Doug's favorite opera music - which is playing now....
I have a ton of things I want to say here - I want to say that I love my brother, that I am grateful to have had him in my life - that I am sorry that I wasn't always the perfect sister or friend, that I wish with all my heart he could have had one good year of retirement and traveled once more to his beloved Puerto Rico.... That I will miss our talks about Project Runway and his weekly reminders to watch it.
Then there is Jean - Jean who will have a broken heart, which seems so unfair as she gave her all - her entire being to Doug and his recovery, what do you say to someone who loves your brother like that? How the heck can I ever make that better, because in truth, this part is really about Jean - the person who loved Doug beyond anything I have ever experienced. I know that once Doug leaves us he will be so much better off, out of pain, worry and free from his fear of getting old. So if you read this please be sure to offer your love and support to her, this very quiet, calm and strong woman who came into my brother's life and saved it for so long.
Thursday, January 31, 2008
Tuesday, January 29, 2008
Doug is Home
Doug came home last evening - and what a journey that was - the ambulance crew had a really hard time getting him up the stairs to my home and ended up doing major damage to my wall. Sigh! They were a bit worried that I was going to do a report and even offered to come in their free time to repair it - but in light of everything it really wasn't their fault and so I will wait until things settle down and put all those years of watching those do it yourself programs to use.
Today is Doug's birthday - and I haven't a clue as to how to even recognize it - what do you do when you know that this is your loved ones last birthday - what do you even say. I am hoping that Hospice will come early to show me what to do for him - I haven't been able to move him from the position the ambulance crew left him in and he had a very uncomfortable first night - he finally went to sleep at around 3 am - I gave him a foot rub like Jean was doing in hopes that it would relax him....just keep us in prayer - this is a hard day for everyone.
DOUG'S BIRTHDAY PM
We had quite an interesting birthday evening - first we ordered a hospital bed - I had made up a regular bed for Doug - with all new striped sheets - no flowers!!! But it just wasn't a good idea as he is not mobile and this made it impossible for him to be comfortable. So we did some major furniture moving and now he is comfortable in a hospital bed.
The best part of the evening is that Doug ate 2 lampchops and asparagus - Jean fed it to him, and we were both so delighted when he actually clapped for the "chief" at the end of the meal - really made the whole evening fun...
Today is Doug's birthday - and I haven't a clue as to how to even recognize it - what do you do when you know that this is your loved ones last birthday - what do you even say. I am hoping that Hospice will come early to show me what to do for him - I haven't been able to move him from the position the ambulance crew left him in and he had a very uncomfortable first night - he finally went to sleep at around 3 am - I gave him a foot rub like Jean was doing in hopes that it would relax him....just keep us in prayer - this is a hard day for everyone.
DOUG'S BIRTHDAY PM
We had quite an interesting birthday evening - first we ordered a hospital bed - I had made up a regular bed for Doug - with all new striped sheets - no flowers!!! But it just wasn't a good idea as he is not mobile and this made it impossible for him to be comfortable. So we did some major furniture moving and now he is comfortable in a hospital bed.
The best part of the evening is that Doug ate 2 lampchops and asparagus - Jean fed it to him, and we were both so delighted when he actually clapped for the "chief" at the end of the meal - really made the whole evening fun...
Friday, January 25, 2008
UpDate January 25th 2008 No Transplant - Hospice Care
Doug has returned home to NY - and is now in St. Peter's Hospital - Jean traveled with him in the ambulance for the 8 hour trip - what a hardship for her, what a wonderful friend she is! I am now preparing Doug's room for him - I am going to go out and get 4 new pillows - just so he can sink into the bed when he gets here.
When I spoke with Doug this evening he was in good spirits - the best he has been in, in a week- and I was so glad to hear him laugh. I told him that I was disappointed about him not having the transplant, because as his living donor I had planned on using that on him for years and years of favors - we both had a good laugh at that, after all he knows its true :) - isn't that what a sister is supposed to do. Drive her brother crazy - so far I think I have done a wonderful job.
I spoke with his friend Mike - Doug's roommate of over 30 years (both confirmed bachelors) - and he is bringing over some of Doug's things - like a small tv with dvd player and his PJ's and just "stuff" to make things homey when he comes here. Mike had repainted Doug's room in his old home, in hopes that one day he would be well enough to return there - and I know that he was quite saddened to realize that this is not going to happen....
I am really glad to be able to have Doug in my home and I know that my mom is looking forward to seeing him. I am not sure how much her Alzheimer's Disease lets her understand, and I am not sure how to handle future events as they happen, I am going to have to leave that up to God and prayer.
Hospice will be coming in for an hour or so every other day - we were hoping for every day - but the insurance only covers a small bit of the expense, and Doug's bills are mounting quickly now, but they have not become unmanageable - thank goodness. I would rather conserve his funds for things that he will really enjoy - maybe bring in Jean's friend - sorry can't remember her name - and give Doug a massage - or maybe get him a really cool haircut, just some fun things instead of all the hospital necessities. In retrospect it really doesn't matter, my mind set has always been to conserve so that Doug would be OK in his retirement years, but that isn't important now....so we will do what we need to do, and I am thankful that we can!
Doug's birthday is January 29th and I am hoping he will be well enough to maybe have some of his friends drop in.
I am both happy to have him home and sad to know that the only reason he is at home is because there will not be a transplant. Life is just a bit strange at times.
Hugs
Denise
When I spoke with Doug this evening he was in good spirits - the best he has been in, in a week- and I was so glad to hear him laugh. I told him that I was disappointed about him not having the transplant, because as his living donor I had planned on using that on him for years and years of favors - we both had a good laugh at that, after all he knows its true :) - isn't that what a sister is supposed to do. Drive her brother crazy - so far I think I have done a wonderful job.
I spoke with his friend Mike - Doug's roommate of over 30 years (both confirmed bachelors) - and he is bringing over some of Doug's things - like a small tv with dvd player and his PJ's and just "stuff" to make things homey when he comes here. Mike had repainted Doug's room in his old home, in hopes that one day he would be well enough to return there - and I know that he was quite saddened to realize that this is not going to happen....
I am really glad to be able to have Doug in my home and I know that my mom is looking forward to seeing him. I am not sure how much her Alzheimer's Disease lets her understand, and I am not sure how to handle future events as they happen, I am going to have to leave that up to God and prayer.
Hospice will be coming in for an hour or so every other day - we were hoping for every day - but the insurance only covers a small bit of the expense, and Doug's bills are mounting quickly now, but they have not become unmanageable - thank goodness. I would rather conserve his funds for things that he will really enjoy - maybe bring in Jean's friend - sorry can't remember her name - and give Doug a massage - or maybe get him a really cool haircut, just some fun things instead of all the hospital necessities. In retrospect it really doesn't matter, my mind set has always been to conserve so that Doug would be OK in his retirement years, but that isn't important now....so we will do what we need to do, and I am thankful that we can!
Doug's birthday is January 29th and I am hoping he will be well enough to maybe have some of his friends drop in.
I am both happy to have him home and sad to know that the only reason he is at home is because there will not be a transplant. Life is just a bit strange at times.
Hugs
Denise
Wednesday, January 23, 2008
UP DATE JANUARY 23, 2008
Well friends it is with a heavy heart that I inform you that Doug has elected not to continue further treatment.
He will be returning from Cleveland as soon as a bed opens up at St. Peter's Hospital - from there Doug will be discharged to hospice care at my home.
I am not sure yet how to handle the situation with my mom - how to help her understand - but for now I am just going to explain that Doug is staying with us for a bit of time. Jean is heartbroken as am I. Noone tried harder to keep a friend comfortable, safe and alive than Jean - she is a true angel.
I would also like to thank Heather for her wonderful encouraging emails, I know I have not yet responded - but I so appreciate them and once things settle down I will send a more personal note :) - Thank you Heather!
PS - Doug's birthday is January 29th
He will be returning from Cleveland as soon as a bed opens up at St. Peter's Hospital - from there Doug will be discharged to hospice care at my home.
I am not sure yet how to handle the situation with my mom - how to help her understand - but for now I am just going to explain that Doug is staying with us for a bit of time. Jean is heartbroken as am I. Noone tried harder to keep a friend comfortable, safe and alive than Jean - she is a true angel.
I would also like to thank Heather for her wonderful encouraging emails, I know I have not yet responded - but I so appreciate them and once things settle down I will send a more personal note :) - Thank you Heather!
PS - Doug's birthday is January 29th
Friday, January 18, 2008
UpDate January 18, 2008
I apologize for not keeping the blog updated in the last few weeks...so much has happened - or actually NOT happened, since the last update that I am not sure where to begin.
Doug has been in a catch 22 sort of situation. St. Peter's Hospital turned Doug down for a heart valve repair, and actually told us that there was no place in the country that would do it. Thank goodness for the internet. Both Jean and I got on the net and found 2 hospitals that would do such a repair. Fortunately, Jean convinced the doctors in Albany to transfer Doug to Cleveland Heart Center in Ohio. He has been there a week now.
It has been a bit of a roller coaster since then - the Cleveland Cardiac Unit is hesitant to do a heart procedure, yet without it Doug will not qualify for a liver transplant.
At first it was suggested that Doug return to Albany and receive hospice care here at my home. So I began preparing a room here for him. And attempted to get my mom ready for Doug's living here with us. As many of you know, our mom has Alzheimer's disease and so it isn't easy to help her understand changes. I do believe that she understands how sick Doug is....but that is about all she may or may not understand. I thought I had gotten used to my mom's condition, that I had accepted she wasn't really herself any longer - but I find it extremely difficult lately, I miss her and wish I could talk to her about Doug and what is going on. Then again, what mother would want to know how sick their child is - so I suppose for her it is a blessing and I should be grateful for that.
Once the decision for hospice was made, we again went on a roller coaster ride. The heart surgeons in Cleveland decided that they just might do the surgery after all. The liver transplant team at the Center would wait and see how Doug came through the first surgery and then allow him to start qualifying for a liver transplant. As of this writing the situation has been a daily wait, to see who would agree to do what - very frustrating.
In the meantime, Jean and Doug are in Cleveland and I am here with mom and working on keeping up with my business client's orders. It has been difficult to continue working, when my heart wants to be in Cleveland. I do not know what our family would have done without Jean's steadfast dedication to Doug's care, and I wonder what other families do when such a thing happens.
Surely the health care system is not set up to help a family when a major medical condition threatens to take a life. Lets face it, without Jean what would I have done? Quit work, place my mom in one of those sub-standard nursing facilites and then travel with Doug? There would have been no other option. Yet what sort of option is that - I would have lost the house and then what...we are all homeless. It just doesn't make sense.
OK I am rambling here - but to be honest I miss my brother, I want to be with him and yet I know I can't be there....I want him to be home with me, yet I know that if that happens that may mean that there is no hope of any procedure.
So we all wait. 3 days ago our option was hospice care at home, 2 days ago they said they may do the heart procedure, yesterday the doctors said they would meet to decide, and as of this am - around 4:30 am to be exact - I am still waiting in NY, Jean is sleeping on hospital chairs in Cleveland, and Doug waits for a team to decide if he should have a shot at life...this is where I wish I had my brother's talent to write. To share what has been happening with such limited ability is frustrating - and without Doug's editorial skills to help me I am at a bit of a loss on how to get across to his friends just what the heck is going on.
I guess the best way to describe the last week or two is - we are in a holding pattern, between hope and a tad bit of despair, if that makes any sense at all!
I am not sure where Doug will be in in the next few days - so if you would like to send him a note you can mail it to me and I will make sure he gets them - his birthday is on January 29th. Feel free to email me at denise@glassbeadz.com for the address. Please put DOUG in the subject line, as my business is web based and I receive quite a bit of email, and I don't want Doug's friends to get lost in the shuffle.
Doug has been in a catch 22 sort of situation. St. Peter's Hospital turned Doug down for a heart valve repair, and actually told us that there was no place in the country that would do it. Thank goodness for the internet. Both Jean and I got on the net and found 2 hospitals that would do such a repair. Fortunately, Jean convinced the doctors in Albany to transfer Doug to Cleveland Heart Center in Ohio. He has been there a week now.
It has been a bit of a roller coaster since then - the Cleveland Cardiac Unit is hesitant to do a heart procedure, yet without it Doug will not qualify for a liver transplant.
At first it was suggested that Doug return to Albany and receive hospice care here at my home. So I began preparing a room here for him. And attempted to get my mom ready for Doug's living here with us. As many of you know, our mom has Alzheimer's disease and so it isn't easy to help her understand changes. I do believe that she understands how sick Doug is....but that is about all she may or may not understand. I thought I had gotten used to my mom's condition, that I had accepted she wasn't really herself any longer - but I find it extremely difficult lately, I miss her and wish I could talk to her about Doug and what is going on. Then again, what mother would want to know how sick their child is - so I suppose for her it is a blessing and I should be grateful for that.
Once the decision for hospice was made, we again went on a roller coaster ride. The heart surgeons in Cleveland decided that they just might do the surgery after all. The liver transplant team at the Center would wait and see how Doug came through the first surgery and then allow him to start qualifying for a liver transplant. As of this writing the situation has been a daily wait, to see who would agree to do what - very frustrating.
In the meantime, Jean and Doug are in Cleveland and I am here with mom and working on keeping up with my business client's orders. It has been difficult to continue working, when my heart wants to be in Cleveland. I do not know what our family would have done without Jean's steadfast dedication to Doug's care, and I wonder what other families do when such a thing happens.
Surely the health care system is not set up to help a family when a major medical condition threatens to take a life. Lets face it, without Jean what would I have done? Quit work, place my mom in one of those sub-standard nursing facilites and then travel with Doug? There would have been no other option. Yet what sort of option is that - I would have lost the house and then what...we are all homeless. It just doesn't make sense.
OK I am rambling here - but to be honest I miss my brother, I want to be with him and yet I know I can't be there....I want him to be home with me, yet I know that if that happens that may mean that there is no hope of any procedure.
So we all wait. 3 days ago our option was hospice care at home, 2 days ago they said they may do the heart procedure, yesterday the doctors said they would meet to decide, and as of this am - around 4:30 am to be exact - I am still waiting in NY, Jean is sleeping on hospital chairs in Cleveland, and Doug waits for a team to decide if he should have a shot at life...this is where I wish I had my brother's talent to write. To share what has been happening with such limited ability is frustrating - and without Doug's editorial skills to help me I am at a bit of a loss on how to get across to his friends just what the heck is going on.
I guess the best way to describe the last week or two is - we are in a holding pattern, between hope and a tad bit of despair, if that makes any sense at all!
I am not sure where Doug will be in in the next few days - so if you would like to send him a note you can mail it to me and I will make sure he gets them - his birthday is on January 29th. Feel free to email me at denise@glassbeadz.com for the address. Please put DOUG in the subject line, as my business is web based and I receive quite a bit of email, and I don't want Doug's friends to get lost in the shuffle.
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