Sunday, December 28, 2008
Thursday, December 18, 2008
Seasons Greetings
Seasons Greetings from the most corrupt state in the country or should I say Happy (bleepin'!!!)Holidays. what can you say?? At least I'm not a native of the state.
I'm sure you're all tired of looking at the blog and continueing to see the Thanksgiving post--I am too. I've been saving everything for the Christmas post. I really didn't know how the holidays would be around here this year. I've been pretty ambivalent and didn't even get a tree until today. In fact, I didn't even get it, Steve did. The decorations are even minimal this year. My mind is telling me to shop, decorate and enjoy but my heart just doesn't have the spirit. i'm thinking things will pick up as I just heard from my sister, that she and her 2 children will be coming up for Christmas. It will be good to have 2 young children in the house wth the anticipation of Santa coming. I think it will be good for Larry as well. His condition remains status quo. He fades in and out of lucidity and the hallucinations continue. At times, some of them are rather humurous and we all get a big laugh out of them including Ole'Lar.
About 2 weeks ago, we were all ready to go with Hospice. I have not been real happy with the current home health service and they discontinued physical, occupational and speech therapy. They said Larry wasn't responding. So if he's not respoding, I thought might as well go with Hospice and we'll get more services. the only problem was that Hospice wasn't going to cover the wound vac. Even though Larry's condition is palliative, I feel it is important for him to stay on the wound vac. According to the nurse, his pressure wound is improving. I know his disease state is progressive, but I would like to keep him as comfortable as possible and not have the wound regress and risk more infection. We did hear back from Hospice and they said that they did find a provider for the wound vac. Maybe into the new year, we'll reconsider.
It has been a real joy to receive holiday cards and hear about everybody's family happenings and pictures. I'm surprised you all continue to send us greetings considering that I haven't sent out cards for years. if you did receive one that was probably Larry's doing. Unfortunately, I must have been behind the door when the greeting card gene was passed out. Again, I have to say that the kindness and support that the family and I have received is just overwhelming and i hope that I can reciprocate two-fold when the shoe is on the other foot. Even though it's difficult for Larry to communicate, I know that he along with myself wish all of you a very joyous Christmas and a truly blessed New Year. As always, continue to pass on the Larry love.
Gail
I'm sure you're all tired of looking at the blog and continueing to see the Thanksgiving post--I am too. I've been saving everything for the Christmas post. I really didn't know how the holidays would be around here this year. I've been pretty ambivalent and didn't even get a tree until today. In fact, I didn't even get it, Steve did. The decorations are even minimal this year. My mind is telling me to shop, decorate and enjoy but my heart just doesn't have the spirit. i'm thinking things will pick up as I just heard from my sister, that she and her 2 children will be coming up for Christmas. It will be good to have 2 young children in the house wth the anticipation of Santa coming. I think it will be good for Larry as well. His condition remains status quo. He fades in and out of lucidity and the hallucinations continue. At times, some of them are rather humurous and we all get a big laugh out of them including Ole'Lar.
About 2 weeks ago, we were all ready to go with Hospice. I have not been real happy with the current home health service and they discontinued physical, occupational and speech therapy. They said Larry wasn't responding. So if he's not respoding, I thought might as well go with Hospice and we'll get more services. the only problem was that Hospice wasn't going to cover the wound vac. Even though Larry's condition is palliative, I feel it is important for him to stay on the wound vac. According to the nurse, his pressure wound is improving. I know his disease state is progressive, but I would like to keep him as comfortable as possible and not have the wound regress and risk more infection. We did hear back from Hospice and they said that they did find a provider for the wound vac. Maybe into the new year, we'll reconsider.
It has been a real joy to receive holiday cards and hear about everybody's family happenings and pictures. I'm surprised you all continue to send us greetings considering that I haven't sent out cards for years. if you did receive one that was probably Larry's doing. Unfortunately, I must have been behind the door when the greeting card gene was passed out. Again, I have to say that the kindness and support that the family and I have received is just overwhelming and i hope that I can reciprocate two-fold when the shoe is on the other foot. Even though it's difficult for Larry to communicate, I know that he along with myself wish all of you a very joyous Christmas and a truly blessed New Year. As always, continue to pass on the Larry love.
Gail
Tuesday, November 25, 2008
T-H-A-N-K-S-G-I-V-I-N-G
As the Holiday is upon us; here are some of my reflections:
T-Thoughts-to everyone who has been thinking of us and putting us in their prayers
H-Hallucinations-Larry thinks I'm a 22 year old that he's going to marry (nothing
like being young and cute)
A-Ambien-it is my friend-without it, I would never know what sleep is
N-Nurses-they have been lifesavers and I truly believe it takes a special person
to fill those white shoes
K-Kindness-I have never experienced such overwhelming kindness
S-Steve and Chris-they have been my pillars, my shoulders to weep on, my sons
G-Girlfriends-I have been blessed with the most wonderful girlfriends;GG's
Lizzettes, Wild Widows and all the others that have unquestionably and
voluntarily given me the comfort that nobody but a girlfriend can give
I-Incontinence- we'll all experience it some day and it saves on toilet paper
V-Volunteers-Thank you, Thank you, Thank you
I-Insightful-I have discovered challenges within myself that I would never have
thought I could face, and did it
N-No Spill Cups-Enough said
G-Gratitude-It is what I extend to all of you. This is a Thanksgiving filled
with my never-ending gratitude.
Thank You all...and forever pass on the Larry love
Gail
T-Thoughts-to everyone who has been thinking of us and putting us in their prayers
H-Hallucinations-Larry thinks I'm a 22 year old that he's going to marry (nothing
like being young and cute)
A-Ambien-it is my friend-without it, I would never know what sleep is
N-Nurses-they have been lifesavers and I truly believe it takes a special person
to fill those white shoes
K-Kindness-I have never experienced such overwhelming kindness
S-Steve and Chris-they have been my pillars, my shoulders to weep on, my sons
G-Girlfriends-I have been blessed with the most wonderful girlfriends;GG's
Lizzettes, Wild Widows and all the others that have unquestionably and
voluntarily given me the comfort that nobody but a girlfriend can give
I-Incontinence- we'll all experience it some day and it saves on toilet paper
V-Volunteers-Thank you, Thank you, Thank you
I-Insightful-I have discovered challenges within myself that I would never have
thought I could face, and did it
N-No Spill Cups-Enough said
G-Gratitude-It is what I extend to all of you. This is a Thanksgiving filled
with my never-ending gratitude.
Thank You all...and forever pass on the Larry love
Gail
Tuesday, October 28, 2008
An FFFFF......N week
I'm sure that got your attention. It has been an ffff....n week. From friends, food, football-WooHoo, I won the fantasy football picks,to people folding my laundry. If ever there was a doubt of the foibles of human nature it was certainly proved wrong this week. All you friends and family out there are amazing. The friendly visit from Dennie and Pete, Larry was very happy about that and Liz and Cindy coming over and sitting with Larry while folding my laundry, it's as if you've done this before. The food drop-offs have been fabulous-if not fattening. And a special shout-out to the e-mails that I have received from Larry's former workers. He made me read them to him over and over again. And yes, I won the football picks this week. After being a bridesmaid for the past 6 weeks, I was finally able to be the bride.
Larry's progress is kind of at a stalemate right now. I'm concerned about him being bed-ridden for the past 8 weeks and his muscle strength is so weak right now. He does get PT but it's very limited due to the site of the pressure wound. The wound has receded and that is the priority but he can't even move his legs from side to side by himself. A trapeze was just installed on the bed (no jokes please) so he can improve his upper body strength. He can't even get a utensil to his mouth so he has to depend on other people to feed him. He is pretty weak. You know, Larry continues to be optimistic about the improvement of his health ,and if that is what he believes than the fff...n faith in humankind shall persevere. Until then...pass on the Larry love.
Gail
P.S. Check out the side additions to the blog (calendar and map)
Larry's progress is kind of at a stalemate right now. I'm concerned about him being bed-ridden for the past 8 weeks and his muscle strength is so weak right now. He does get PT but it's very limited due to the site of the pressure wound. The wound has receded and that is the priority but he can't even move his legs from side to side by himself. A trapeze was just installed on the bed (no jokes please) so he can improve his upper body strength. He can't even get a utensil to his mouth so he has to depend on other people to feed him. He is pretty weak. You know, Larry continues to be optimistic about the improvement of his health ,and if that is what he believes than the fff...n faith in humankind shall persevere. Until then...pass on the Larry love.
Gail
P.S. Check out the side additions to the blog (calendar and map)
Wednesday, October 22, 2008
Life with Larry...back home
I'll try and keep this short. Larry's tests from Saturday nite were negative. No UTI, no infection, except a hunch that he has been and may be dehydrated. We're trying to keep him full of water and Powerade, Gatorade, etc. His hallucinations have diminished and now he wants his address book and phone. So look out..you've all been warned. Our lives are certainly different since Larry's been home. In some ways it's not as dificult as I thought it would be, and in other ways I sometimes wonder where the strength comes from to just get through the moment. The boys and I have adjusted our schedules as best can be. The offers of help are greatly appreciated and as my sister always says : "there's a special place in heaven for all you people." So until next time...pass on the Larry love.
Gail
Gail
Saturday, October 18, 2008
Larry's Home!!!!
Yes, Larry has finally come home. It was not the homecoming we expected but after 6 months, he is back in his own home. It was quite an ordeal to get him here. He came home Monday evening after being told he would be home by 4:00. The dining room has been transformed into his bedroom. Not the ideal set-up, but right now he is unable to maneuver stairs. It is strange to see your dining room now looking like a hospital room. Larry is still on a wound vac and is strictly bed-bound. Now that he's home it is very unnerving to take a good look at him. This is a man who was robust and never a lightweight. Now he is very much hanging skin and bones. We have been able to manage his care for this past week. After having a family meeting Sunday nite and explaining the reality of things, the boys and I were able to make it through the week. Chris volunteered to go on the PM shift at work making him available most mornings until 2PM. Steve and I were able to pick up the rest of the slack. We have had the home health RN here Wed. and Fri. She checkss and cleans his wound and takes care of his cathater. Physical and Occupational therapy has not started yet. It's great to have these people but they have no set times. So we are still looking for people to plug in the gaps. Right now, I know for sure that I need people sitters for Monday PM, Tuesday PM,Wednesday, Friday and the week-end. Not for the entire days but for a portion of each. I welcome everyone and anyone. I can be reached by my e-mail: gailwilliams614@msn.com. Larry's condition is somewhat erratic right now. As I type, there is a RN here trying to draw blood on him and check his urine (sounds gross, doesn't it?). Since Tuesday, Larry has been having awful hallucinations. He keeps seeing a beautiful, young, thin woman. I tried to tell him that's not an illusion, but it's me, his wife. We try to see the humor in everything. But seriously, these hallucinations can very disconcerting. They're very real to Larry yet he sort of knows that they're not. I thought that the cause of this could possibly be his meds. I spoke with his doctor last nite and she seemed to think it could be a UTI or vey low electolytes. We'll know more tomorrow. So,until the next time...pass on the Larry love.
Gail
Gail
Wednesday, October 8, 2008
I can't believe that I'm making another post within 3 days, but things change quickly. We just found out that Larry will be discharged this coming Monday, Oct.13. So much for the additional 3 weeks his doctors supposedly said he needed. It all comes down to bureaucy and money. He has used up his allotment of Medicare and supplemental insurance days so all of sudden we have to scramble. Decisions have to be made quickly and you can only hope that you're making the right ones. They will not give Larry a "safe discharge" unless he has 24/7 secured care in place. So remember when I put out the HELP plea? Well, I'm going to need it now. I hope I can count on all of you that offered so readily and graciously. We don't have an exact plan as of yet but by Monday it should be in place. We will be using a home health care team that will be coming in several times a week to take care of Larry's wound and administer the appropriate therapies to him. We also are enlisting the help of a nurse's aid to come in approximately 20hrs. a week to help with Larry's bathing, dressing and feeding. Where we need the help is when the nurse's aid leaves and before myself or one of the boys comes home from work. Right now, our work schedules are not exactly routine. I welcome all that want to step up to the plate and take a swing at Larry's care (can you tell that I've been too involved with the Cubs this season?) I will assure everyone that Larry is improving. He is much more coherent and I attribute that to the antibiotic he has been on to fight the severe infection caused by the pressure wound. It's amazing how that infection, when not controlled(as in the last facility) can just make your whole body and mind run amuck. So in signing off for tonight, I ask that whoever is willing to volunteer to Larry's cause to either post a comment here or send me an e-mail. As always....pass on the Larry love.
Gail
Gail
Sunday, October 5, 2008
Larry's Improving
Well, here it is almost 2 weeks since my last post. I'm not getting lazy; I'm just don't want to become one of those bloggers who think what they have to say is so important that everyone can't wait for the next post. And quite honestly my creative juices weren't flowing real well. What makes today any different, I don't know. Especially when I've been hit with a sinus infection, or cold, or something. I feel in quite simple medical terms: "crappy." However, I've laid on the sofa long enough today and feel the need to say I accomplished something.
As this blog does pertain primarily to Larry, here's some good news. He's making progress and is sounding much better. Chris, who remains our most frequent visitor to Larry has even indicated that "Dad is getting better." It's good to hear that coming from Chris as he has appeared to be quite affected by Larry's condition. We've all been affected by Larry's condition and we all handle it differently; good or bad. When I last saw Larry last Wednesday, he said the doctor indicated that he is making remarkable improvement but that he will still have to remain there for another 3 weeks. I just hope Medicare and supplemental insurance is covering all of this. I just don't need any new shocking bills right now. I'm also concerned about the atrophy of Larry's muscles. He has not been out of a hospital bed in about 4 weeks. He is given bedside therapy but it's only limited range of motion. I suppose we need to concentrate on getting this wound thing cleared up first. Do you realize that Larry has been gone for almost 6 months now??? We're all very tired of this and just wish life could be back the way it was several years ago. You know one never seems to realize how good your life can be until it goes down the toilet. I remember my mom saying "if you have your health, you have everything." So that reminds me, I better get that mamogram in this month (and all you other ladies too) as this is National Breast Cancer Month and I am a 6 year survivor. WooHoo!!!!
Anyway, back to Ole' Lar. I will be out to see him tomorrow and we'll probably watch Ellen (his favorite daytime program)together. I hope to catch up with his doctor and wound care team as well. I'm one of those people that has to ask the who, whats, and whys, of his condition and how it is being treated. Remember , I am that control freak. Now if anyone feels the need to get some of that Midwest Autumnal feeling, come out to Sycamore for their annual Pumpkin Festival. It's a wonderful festival especially for the younger set and even us vintage folk enjoy it. I think it may be this upcoming week-end but I'm not sure. You can check on the internet. And while your out there give Ole' Lar a shout. He's much more lucent these days and loves to hear from everyone. Which reminds me, thank you to all who have sent cards and calls to him. He is quite touched by all of that. In fact, leave it to Lar to remind me of all the birthdays at this time and of course how he always sent the cards. So I want to wish his sister Linda a belated happy birthday and his brother-in-law- Tom a belated birthday wish also; and shout-out birthday wishes to Mary Ellen, Steve S., Chris, Chase and anyone else that Larry would normally remember at this time. So until the next time.....pass on the Larry love.
Gail
As this blog does pertain primarily to Larry, here's some good news. He's making progress and is sounding much better. Chris, who remains our most frequent visitor to Larry has even indicated that "Dad is getting better." It's good to hear that coming from Chris as he has appeared to be quite affected by Larry's condition. We've all been affected by Larry's condition and we all handle it differently; good or bad. When I last saw Larry last Wednesday, he said the doctor indicated that he is making remarkable improvement but that he will still have to remain there for another 3 weeks. I just hope Medicare and supplemental insurance is covering all of this. I just don't need any new shocking bills right now. I'm also concerned about the atrophy of Larry's muscles. He has not been out of a hospital bed in about 4 weeks. He is given bedside therapy but it's only limited range of motion. I suppose we need to concentrate on getting this wound thing cleared up first. Do you realize that Larry has been gone for almost 6 months now??? We're all very tired of this and just wish life could be back the way it was several years ago. You know one never seems to realize how good your life can be until it goes down the toilet. I remember my mom saying "if you have your health, you have everything." So that reminds me, I better get that mamogram in this month (and all you other ladies too) as this is National Breast Cancer Month and I am a 6 year survivor. WooHoo!!!!
Anyway, back to Ole' Lar. I will be out to see him tomorrow and we'll probably watch Ellen (his favorite daytime program)together. I hope to catch up with his doctor and wound care team as well. I'm one of those people that has to ask the who, whats, and whys, of his condition and how it is being treated. Remember , I am that control freak. Now if anyone feels the need to get some of that Midwest Autumnal feeling, come out to Sycamore for their annual Pumpkin Festival. It's a wonderful festival especially for the younger set and even us vintage folk enjoy it. I think it may be this upcoming week-end but I'm not sure. You can check on the internet. And while your out there give Ole' Lar a shout. He's much more lucent these days and loves to hear from everyone. Which reminds me, thank you to all who have sent cards and calls to him. He is quite touched by all of that. In fact, leave it to Lar to remind me of all the birthdays at this time and of course how he always sent the cards. So I want to wish his sister Linda a belated happy birthday and his brother-in-law- Tom a belated birthday wish also; and shout-out birthday wishes to Mary Ellen, Steve S., Chris, Chase and anyone else that Larry would normally remember at this time. So until the next time.....pass on the Larry love.
Gail
Sunday, September 21, 2008
Helloooo:
Well, if anyone is following this blog, you've probably noticed that I haven't posted in over a week. Needless to say, it has been an extremely busy week to the point where I had to start taking Omega3 so I could focus better. You're probably wondering if it worked-I'm not sure. A lot of things were going on that required much attention. Fortunately, the boys were picking up some of the slack. Speaking of the boys, Steve has flexed his independent muscle and made the big move to his own place. This is a good thing. He hasn't moved too far so he will be around to continue with the help and I think it's important for him to experience the economics of independent living. However, do you think this week was a good example of sound economics??As has been said by us democrats (yes, now you know)...what were you thinking?? I'm not going to get into that. You all know the expression about religion and politics. Anyway, let me fill you in on the life of Larry (that's what you all wanted to know anyway).
Larry is now in his 9th. facility. He was moved Monday night to the LTAC facility as we had hoped. The only problem is that it's in Sycamore. You know, this is Chicago, could a closer facility not have been found or what!! Sycamore is about a 35-40 minute one-way trip for us. It's near Northern Illinois University in DeKalb. It's a lovely drive, out in the country and all; and especially now with Autumn upon us. This L-TAC was chosen because it is suppose to specialize in wound care. I was not able to see Larry until Friday. He seemed ok but I think he's very frustrated and growing more depressed. Can you blame him? I do worry about that. Because of the distance and my schedule I feel that I haven't got a handle on this hospital yet. Thankfully Chris has been the family representative this week. I do know for sure that Larry's meds need a good tweaking. I tell you if you don't keep on top of these places and be an advocate for the patient, things could take a very uncertain turn. I will be there tomorrow so hopefully I will get a better feel for Larry's care. By the way, the name of the hospital that Larry is in is Kindred in Sycamore, Illinois. I don't have the exact address or phone number but I'm sure it's on the internet. If anyone would like to contact Larry that's where he is. I can't guarantee his articulation or his cognisance (it's the meds) but I'm sure if you have patience he would be happy to hear from a friend. Until then...pass on the Larry love.
Gail
Well, if anyone is following this blog, you've probably noticed that I haven't posted in over a week. Needless to say, it has been an extremely busy week to the point where I had to start taking Omega3 so I could focus better. You're probably wondering if it worked-I'm not sure. A lot of things were going on that required much attention. Fortunately, the boys were picking up some of the slack. Speaking of the boys, Steve has flexed his independent muscle and made the big move to his own place. This is a good thing. He hasn't moved too far so he will be around to continue with the help and I think it's important for him to experience the economics of independent living. However, do you think this week was a good example of sound economics??As has been said by us democrats (yes, now you know)...what were you thinking?? I'm not going to get into that. You all know the expression about religion and politics. Anyway, let me fill you in on the life of Larry (that's what you all wanted to know anyway).
Larry is now in his 9th. facility. He was moved Monday night to the LTAC facility as we had hoped. The only problem is that it's in Sycamore. You know, this is Chicago, could a closer facility not have been found or what!! Sycamore is about a 35-40 minute one-way trip for us. It's near Northern Illinois University in DeKalb. It's a lovely drive, out in the country and all; and especially now with Autumn upon us. This L-TAC was chosen because it is suppose to specialize in wound care. I was not able to see Larry until Friday. He seemed ok but I think he's very frustrated and growing more depressed. Can you blame him? I do worry about that. Because of the distance and my schedule I feel that I haven't got a handle on this hospital yet. Thankfully Chris has been the family representative this week. I do know for sure that Larry's meds need a good tweaking. I tell you if you don't keep on top of these places and be an advocate for the patient, things could take a very uncertain turn. I will be there tomorrow so hopefully I will get a better feel for Larry's care. By the way, the name of the hospital that Larry is in is Kindred in Sycamore, Illinois. I don't have the exact address or phone number but I'm sure it's on the internet. If anyone would like to contact Larry that's where he is. I can't guarantee his articulation or his cognisance (it's the meds) but I'm sure if you have patience he would be happy to hear from a friend. Until then...pass on the Larry love.
Gail
Friday, September 12, 2008
Ol' Lar does a 90- not a 180
Boy, what a difference 24-48 hours make. Yesterday, when I visited Larry, his condition did not appear very good. He was somewhat incoherent and awaiting a procedure. It was difficult to understand him and his doctor had given me a call with a not so rosy outlook. I stayed with him until he was taken to surgery for a debridement of his pressure wound. I was not able to stay so the shift was taken over by the boys. The doctor informed the boys that Larry did well in surgery, however they did find some necrotic tissue and follow-up would consist of a wound vac and a possible flap. I did not speak with Larry until he called this morning; and much to my delight it was easier to understand him.
Chris and I went to see him this afternoon and were pleasantly surprised to see him alert, talkative and hungry. How this change came about, I'm not sure. I have a feeling that Larry has been living with this infection for some time now, and when the antibiotics began working and he was receiving oxygen his condition appears to be better. However, Larry has another long road ahead of him. Unfortunately his homecoming is still undetermined. While his procedure was successful,the infectious disease doctor said that the infection has traveled to his blood and that he needs a very heavy duty IV antibiotic. Hospice will not approve that therapy at home so a difficult decision had to be made. It was suggested that he may be a candidate for LTAC-long term acute therapy. He will be evaluated for that on Monday. As much as we would like him back home, we are not equipped to handle that condition. Larry is supposed to be on this antibiotic until mid-October. In fact, a pic line was inserted into him today. So our hope is that his evaluation is approved and the antibiotic therapy starts soon. Has this guy not been through enough ringers or what????? So, I'm asking you to send up some prayers for him this week-end. I also want to thank everyone who has responded with some wonderful feedback and offers of help. I will not let you all off the hook however, I will just postpone the offers. Untill next time---pass on the Larry love.
Gail
Chris and I went to see him this afternoon and were pleasantly surprised to see him alert, talkative and hungry. How this change came about, I'm not sure. I have a feeling that Larry has been living with this infection for some time now, and when the antibiotics began working and he was receiving oxygen his condition appears to be better. However, Larry has another long road ahead of him. Unfortunately his homecoming is still undetermined. While his procedure was successful,the infectious disease doctor said that the infection has traveled to his blood and that he needs a very heavy duty IV antibiotic. Hospice will not approve that therapy at home so a difficult decision had to be made. It was suggested that he may be a candidate for LTAC-long term acute therapy. He will be evaluated for that on Monday. As much as we would like him back home, we are not equipped to handle that condition. Larry is supposed to be on this antibiotic until mid-October. In fact, a pic line was inserted into him today. So our hope is that his evaluation is approved and the antibiotic therapy starts soon. Has this guy not been through enough ringers or what????? So, I'm asking you to send up some prayers for him this week-end. I also want to thank everyone who has responded with some wonderful feedback and offers of help. I will not let you all off the hook however, I will just postpone the offers. Untill next time---pass on the Larry love.
Gail
Tuesday, September 9, 2008
Homecoming on Hold
This is Gail's sister, Larry's Thursday homecoming is on hold for a little while. He had an appointment at the infectious disease doctor today and was subsequently hospitalised for an infection in his pressure wound. Right now he is in Sherman Hospital on IV antibiotics and is awaiting the results of the wound culture, we should know more in a day or two. He hasn't lost his sense of humor in all of this; while Gail was talking with me on the phone in Larry's room, he wanted to know if I could come over and have a party in his room! That's our Lar!
Saturday, September 6, 2008
Getting Ready for Larry's Homecoming
Well, I never thought that I would have a blog. My sister, convinced me that this would be the most efficient way to communicate with so many of you out there that have inquired about Larry and his health. Quite honestly, this is easier for me than to speak on the phone where I most often turn into a blubbering idiot. Often, I find it difficult to talk about Larry on the phone because it's difficult for me to control my emotions, and for someone who has admittedly been a "control Freak", my vulnerability shows through.
Larry will be coming home on Thursday, Sept. 11th. He hasn't been home since April 8th. which started with a much needed successful knee replacement and turned into a medical chamber of horrors. His medicare runs out in a week for rehab nursing assistance and we all decided it is most definitely time for "ole Lar to be back at his home. Imagine having the whole Spring and Summer months pass you by; missing his son's college graduation, watching Spring flowers bud and grow, not tasting a grilled hamburger, nor seeing a summer firework and most importantly missing the other July National Holiday-my birthday. Of course, Larry is a different man from the time he left his house in April to the present. He has changed physically-lost 50 lbs. , is extremely rigid and has little range of motion. He has also changed mentally, a result of the progression of the disease. Sometimes he's a little fuzzy-which I guess we can all admit to at times-only Lar's is a little more often; and then he has days where his acuity is pretty sharp. I strongly believe that a nursing home stay contributes to what I call "nursing home dementia."
If any of you have had the experience of having a loved one in that type of facility, you know what I'm talking about. I do not consider bingo much of a mental challenge.
As I said Larry has gone through a medical chamber of horrors. He has been in 4 different hospitals and 4 different rehab facilities since this all started. The knee replacement went well and the initial rehab started out ok to the point where Larry was actually walking with a walker as recently as early May. Then all hell broke loose. He contacted C-DIFF(a severe bacterial infection which affects control of all bodily functions-if you catch my drift-and leaves the patient extremely weak) followed by a yeast infection in his throat and the start of a pressure sore. This put him all behind the eight ball and rehab had to start all over in a different facility. Strides were attempted to get him up and moving , only to be sidelined by more C-DIFF and MRSA in his pressure wound site. This was also complicated by DVT (deep vein Thrombosis) in his leg. Another hospital visit, another rehab facility. So let's give it the old college try again. Larry is a fighter. Sure he complained about the food and getting out of whatever place he was or is in; but he continued to have the motivation and determination to proceed with all types of therapy in the hopes of being able to walk again and be able to go upstairs by himself. Unfortunately, that's not going to happen
I am in the process of turning my dining room into Larry's new bedroom. he needs to be on the main level. Unfortunately, there is no full bath on this level so the challenge has raised to design some sort of shower. I have some unconventional ideas that might actually fly.
We have decided to pursue the Hospice route of care for Larry. I met with them yesterday, and considering Larry's many needs, this seems the most reasonable solution that would best suit Larry and the rest of the family. For those of you that seem shocked by the "H" word, I have been assured that hospice is not necessarily an end of life option. Larry's progressive disease is just that-progressive. The Parkinsonism, referred to as MSA-multi system atrophy or Shy-Drager Syndrome has rapidly robbed Larry of muscle strength and tone, left him incontinent, the inability to swallow properly, and is showing signs of dementia; not to mention that he has a stage 4 pressure sore. He needs assistance with just about every activity of daily life. Now considering all that Larry has been through, I still consider him a remarkable man. He rarely complains about his care or his conditions. I , on the other hand have been like a pit bull particularly when it comes to nursing home care. The list of improprieties I have witnessed has been appalling. It has left me frustrated, exhausted , and above all angry. Remember those 50 lbs. Larry has lost, well they didn't just evaporate into thin air-noooooo, they have re-positioned themselves on this 50 something body. That, however is just going to have to be put on hold until later.
Now I have come to the part that is always difficult for people to address. HELP!!! I know many of you have offered to help Larry and the family in the past but quite frankly I really didn't know what he or us needed at that time. Now I do. As I have mentioned we are enlisting the help of hospice but I don't have the logistics worked out just yet. I am asking for your time. Larry cannot be left alone, and the boys and I need to continue to work. We need volunteers to basically sit with Lar from late morning until early evening. This would probably incur in 2 hour intervals depending on the volunteers. Not only would this be appreciated by us, but I know Larry would sincerely welcome the opportunity to visit with friends, family and neighbors-even if he does fall asleep. I have asked some friends to set up a volunteer spread sheet when the time comes and I have also requested the expertise of an RN friend to demonstrate and/or explain any conditions that may arise with Larry's care. If you all feel up to this challenge and it will be a challenge, you can respond in these posts or through my e-mail. I am also looking for help with the construction of a wheelchair ramp for our front entrance. If anyone knows "a guy" who does this, please pass the name onto me.
Well, it is late and I am tired. I hope I brought many of you up-to-date about Larry's status. My intention is not to bring on gloom and doom nor am I sugarcoating it. It is what it is and that's why everybody loves Larry.
Larry will be coming home on Thursday, Sept. 11th. He hasn't been home since April 8th. which started with a much needed successful knee replacement and turned into a medical chamber of horrors. His medicare runs out in a week for rehab nursing assistance and we all decided it is most definitely time for "ole Lar to be back at his home. Imagine having the whole Spring and Summer months pass you by; missing his son's college graduation, watching Spring flowers bud and grow, not tasting a grilled hamburger, nor seeing a summer firework and most importantly missing the other July National Holiday-my birthday. Of course, Larry is a different man from the time he left his house in April to the present. He has changed physically-lost 50 lbs. , is extremely rigid and has little range of motion. He has also changed mentally, a result of the progression of the disease. Sometimes he's a little fuzzy-which I guess we can all admit to at times-only Lar's is a little more often; and then he has days where his acuity is pretty sharp. I strongly believe that a nursing home stay contributes to what I call "nursing home dementia."
If any of you have had the experience of having a loved one in that type of facility, you know what I'm talking about. I do not consider bingo much of a mental challenge.
As I said Larry has gone through a medical chamber of horrors. He has been in 4 different hospitals and 4 different rehab facilities since this all started. The knee replacement went well and the initial rehab started out ok to the point where Larry was actually walking with a walker as recently as early May. Then all hell broke loose. He contacted C-DIFF(a severe bacterial infection which affects control of all bodily functions-if you catch my drift-and leaves the patient extremely weak) followed by a yeast infection in his throat and the start of a pressure sore. This put him all behind the eight ball and rehab had to start all over in a different facility. Strides were attempted to get him up and moving , only to be sidelined by more C-DIFF and MRSA in his pressure wound site. This was also complicated by DVT (deep vein Thrombosis) in his leg. Another hospital visit, another rehab facility. So let's give it the old college try again. Larry is a fighter. Sure he complained about the food and getting out of whatever place he was or is in; but he continued to have the motivation and determination to proceed with all types of therapy in the hopes of being able to walk again and be able to go upstairs by himself. Unfortunately, that's not going to happen
I am in the process of turning my dining room into Larry's new bedroom. he needs to be on the main level. Unfortunately, there is no full bath on this level so the challenge has raised to design some sort of shower. I have some unconventional ideas that might actually fly.
We have decided to pursue the Hospice route of care for Larry. I met with them yesterday, and considering Larry's many needs, this seems the most reasonable solution that would best suit Larry and the rest of the family. For those of you that seem shocked by the "H" word, I have been assured that hospice is not necessarily an end of life option. Larry's progressive disease is just that-progressive. The Parkinsonism, referred to as MSA-multi system atrophy or Shy-Drager Syndrome has rapidly robbed Larry of muscle strength and tone, left him incontinent, the inability to swallow properly, and is showing signs of dementia; not to mention that he has a stage 4 pressure sore. He needs assistance with just about every activity of daily life. Now considering all that Larry has been through, I still consider him a remarkable man. He rarely complains about his care or his conditions. I , on the other hand have been like a pit bull particularly when it comes to nursing home care. The list of improprieties I have witnessed has been appalling. It has left me frustrated, exhausted , and above all angry. Remember those 50 lbs. Larry has lost, well they didn't just evaporate into thin air-noooooo, they have re-positioned themselves on this 50 something body. That, however is just going to have to be put on hold until later.
Now I have come to the part that is always difficult for people to address. HELP!!! I know many of you have offered to help Larry and the family in the past but quite frankly I really didn't know what he or us needed at that time. Now I do. As I have mentioned we are enlisting the help of hospice but I don't have the logistics worked out just yet. I am asking for your time. Larry cannot be left alone, and the boys and I need to continue to work. We need volunteers to basically sit with Lar from late morning until early evening. This would probably incur in 2 hour intervals depending on the volunteers. Not only would this be appreciated by us, but I know Larry would sincerely welcome the opportunity to visit with friends, family and neighbors-even if he does fall asleep. I have asked some friends to set up a volunteer spread sheet when the time comes and I have also requested the expertise of an RN friend to demonstrate and/or explain any conditions that may arise with Larry's care. If you all feel up to this challenge and it will be a challenge, you can respond in these posts or through my e-mail. I am also looking for help with the construction of a wheelchair ramp for our front entrance. If anyone knows "a guy" who does this, please pass the name onto me.
Well, it is late and I am tired. I hope I brought many of you up-to-date about Larry's status. My intention is not to bring on gloom and doom nor am I sugarcoating it. It is what it is and that's why everybody loves Larry.
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