Sunday, January 6, 2008

UPDATE January 6, 2008

UPDATE
January 6, 2007

We have begun the new year with Jack’s successful transfer to Lexington Healthcare Center at 178 Lowell St. in Lexington. He was successfully discharged from Lahey Clinic on December 27. He was placed in a private room immediately. One of the things that I have learned in this experience is that medical care has so many layers affiliated with it. One of these layers is the case manager role. It is a role that I would not want. So far I have not found one that really takes responsibility. I could write a book on these people. Here is a classic example of our experiences. Jack was to be discharged from Lahey Clinic on December 26, 2007. I was advised to get to Lahey as soon as possible for this event. I arrived. I notified the nurses, called the case manager, and waited patiently – remember that it was urgent that I get there. Two hours lapsed and finally the case manager showed up to say they were trying to find a place for Jack. Jack refused to return to Winchester. The Lexington Healthcare Center was on our short list prior to our 18 hour stay in Winchester. I decided to go visit it. Prior to my leaving, I had told the case manager that I wanted a private room for Jack. She informed me that Medicare does not pay for private rooms and that we would have to pay the difference. I told her no problem. I go visit the Center, I asked the admissions coordinator about the cost differential for a private room. She said there is none at their facility apparently because they have so many private rooms – this facility was bought out and significantly upgraded recently. Maybe someone is getting smarter about care giving! She did inform me that Jack would have to be approved. I told her to initiate that review. In the meantime, I return to Lahey Clinic to find that the case manager had left for the day and that Jack would not be discharged that day. I left a message with an on call case manager who never called back. The next day I finally contacted the case manager, she was not the same one from the previous day; had no idea what I was talking about in regard to Jack transferring to Lexington Healthcare Center, after all, she was not on the day before and knew nothing. I keep forgetting that people do not read!!! To make a long story shorter, he was approved for the facility and he was to be moved. The admission’s coordinator called to tell me. She said there is good news and bad news. “The good news is that Jack was approved for admission; the bad news is that they are not Blue Cross/Blue Schield (BC/BS) approved but are seeking approval”. The cost sharing after Day 20 (first 20 days are covered by Medicare) is $125/day; the next 80 days are shared with Medicare and patient unless the supplemental insurance is an approved insurance. I agreed to do this sharing of costs since we really like the environment and I did want Jack to move again. When I approached the case manager at Lahey and told her that this facility was not BC/BS approved, she had no idea along with no idea that a private room did not have a cost sharing with Medicare. When I asked her why she did not know this important information, she claimed too much to remember and too many facilities that she deals with daily. The bottom line is “they do not read”!!!! It is a very frustrating experience dealing with the layers and some of the people in the layers. I cannot imagine how difficult all of this must be for infirmed and especially the elderly. It is all in day’s work. I keep remembering the verse in Psalms 118:24 – “This is the day that the Lord has made; let us rejoice and be glad in it.”
Yes, even the days that are more demanding than others.

When Jack arrived at Lexington Healthcare Center, he was very weak, hardly able to get out of bed. Eleven days later, he is clearly 100% stronger than he was a week ago for which we are most thankful. Elizabeth, our private nurse’s aid, is staying from 7:00 AM – 2:00 PM. Jack’s engineering mind really does expect things to be done in a timely and efficient manner. I am certainly more comfortable knowing he has such good attention. One of the nice things about the facility is that meals are taken in a dining room instead of the patient’s room. A person has a choice but Jack chooses to go the dining room for lunch and dinner. We have met many wonderful caregivers and patients. One patient in particular is a 92 year old man named Frank. Frank grew up in Cambridge near Harvard Square. He is recovering from a broken hip. When we arrived, Frank seemed depressed and was barely eating. Jack and Frank have become big buddies. Jack has a farmer’s appetite. He amazes everyone who watches him eat, especially the amount. I told Frank that Jack grew up on a farm in Kentucky. I told him he left the farm but took his appetite with him.

I generally join Jack each evening while he is having his dinner. One evening, I was late due to an appointment. When I arrived, Frank had finished his dinner. I told him how impressed I was with his dinner being eaten. He got a big smile on his face and said I just learned that Jack was a MIT professor. We were having such a good conversation that I forgot what I was doing. Ever since that night, Frank has been finishing his dinner. He is very proud of this fete as are we. We have a nightly bet about how much he can eat. Also, after dinner each evening, I have been reading a book on the history of Winchester to Jack and Frank. Frank asks each evening, “Are we going to read tonight?” It is so amazing how little effort it takes to stimulate these minds in the dining room but mostly no one has the time due to do the other more important and demanding needs. You get to know things about these patients. One lady, Nancy, has severe shaking of her hands to the point she needs help eating. Nancy must have been a chain smoker since they keep her with a straw in her hand and she puffs away the days on the straw. Many of these people are elderly and spend most of their days sitting so it does not take a lot to make a little difference. I told Jack that he has gotten Frank eating better. Jack has also helped out some elderly ladies get help to take them to the bathroom. Then there is Jay, Mary, Maria and several others. We definitely have created a more interesting environment. The nursing staff are excellent and are very helpful. Everyone in an environment like this one are forgotten but the caregivers are amazingly. Tonight we had several others join us for our reading. It takes so little effort to make a difference. Jack said one of the good things about the experience of being in this environment is that he sees a side of the world he never knew much about. We are so grateful for the many helping hands.

Jack has learned he can ambulate with wheels. Early in the week, we discovered that his wheel chair only had one leg rest for his left, weak leg. We inquired and they told us they wanted Jack using his right leg to get around. I showed him how far he could go. He was ambivalent in the beginning but soon learned that he could have much more freedom. He can walk about 50 steps at a time assisted by someone standing near him. He is still very wobbly. He is generally in good spirits. He does seem irritable at times. We understand that some of the side effects of his antiseizure medication is irritability.

On January 4, Jack and I shared our 39th wedding anniversary. I took in special desserts to share with Frank, Jack, and myself. We spent the remainder of the evening talking about the many blessings we have shared over our 39 years. Everyone commented on how long we have been married. I told them my grandfather would have called us an endangered species. My only comment was that it is not long enough. Jack commented that it was a very special anniversary because we may not have more than about one more. We do not know, we continue to be thankful for each day, soak in the blessings, and leave the rest behind. One of Jack’s comments was that one of the Lord’s great gifts to us has been the gift of each other and our marriage. He also commented as great as that gift is the most important thing is recognizing the giver of the gift, our Lord. So we “give thanks to the Lord for he is good; his love endures forever.” Psalm 118:29

Our goal and hope is that as Jack gains strength and stamina that we may be able to bring him home in a few weeks. He will need care 7 days a week but overall we hope and pray that he will be able to achieve this goal. We go through each day recognizing that Jack is very vulnerable but hoping that he has many good months ahead without more setbacks. If anyone would like to call him, he can be reached at 781-778-3751. This number is his direct line. He may not talk long or he may tell you he doesn’t feel like talking but it would be a reminder that people are thinking of him. If he doesn’t answer, he may be with his therapists.

This Friday, he is scheduled for his routine MRI scan to determine if his brain is stable. We will be discussing his next course of treatment. We seek your prayers as we continue to travel this journey. Our prayer for all of you is the Lord will bless you with His abundance in the New Year.

Blessings,
Carolyn

4 comments:

fastcats3 said...

THANKS CAROLYN FOR THE UPDATE, I LOOK TWICE A DAY FOR YOUR POSTINGS . IAM VERY HAPPY TO HEAR OF JACK'S PROGRESS .MANY MANY BLESSINGS TO YOU ALL YOUR FRIEND IN KY DANNY C

Barbara Balkwill said...

Dear Carolyn,

Thank you so much for updating this site and letting all of us see into your lives and experience everything with you.

I have been where you are now many times when it comes to case managers. Most of the ones I dealt with during my fathers illnesses were pretty useless. They always had a habit of calling you and expecting decisions immediately without giving you time to think about the consequences of "putting" your loved one into a nursing home "rehab hospital".

The fact that most of these places are understaffed, underpaid, and alot of the time uncaring, makes the decisions so much harder.

Many times I would be crying into the phone telling them to send him somewhere I knew he hated, but having no alternatives because or insurance or medicaid and lack of family funds to get him somewhere better. (Obviously, I'm not over this sad part of my father's life).

I pray that Jack is now in a place that will care for him, empower him and help him become strong and healthy so he can come home to you and the rest of your family.

You are all in my prayers and thoughts, now and always.

All the best,

Barbara Balkwill

fastcats3 said...

carolyn i forgot to congratulate you & jack on your 39 years of marrisge .my wife and i were at your wedding as amatter of fact i was agroomsman . Iasked jack at that time if he wasn't marring awoman to much younger than than him? He replied THERE IS AN OLD CHINESE PROVERB THAT UPON MARRIAGE A MAN;S AGE REVERTS BACK TO THE WOMANS AGE!! INEVER FORGOT THAT REMARK. SHIRLEY AND I WILL BE MARRIED 50 YRS IN MAY OF THIS YEAR YET JACK IS 2YRS OLDER THAN I GO FIGURE!!BEST WISHES FREINDB DANC

Rosalie Calloway said...

Carolyn and Jack:
Our family seems to have lost contact with yours....even though our thoughts and prayers have been with you since we heard about Jack. I have tried to reach Myra but haven't been able to....even though I assume she is still living in Lexington. I'm in Georgetown - only 15 minutes away!
Anyway, yesterday I was in Monroe County visiting my mom - Jack's Aunt Mamie. She had several pages of your blog which Carolyn Page had brought to share with her. We were so excited to finally have news - and especially since your notes reveal the progress Jack is making.
I'm not sure you know but Daddy died July 31st of this past year. He and mom were roommates at the local nursing home. Mom now has a private room there and at times, we think she might be able to return to the homeplace...but her health is somewhat fragile and she is broken hearted without Daddy. We also suffered the loss of Evans' wife Nikki in May of 2006. She was the administrator of the nursing home where mom and dad lived...and Nikki even became a patient herself prior to losing her battle with lung cancer. Evans remains a dairy farming and a most wonderful father to the little girl he and Nikki had adopted. (Aubrey is now 11 years old....so Evans is having a fun time with parenting...but of course is lonely without Nikki.) Ivan still is farming in Monroe County, has 3 chilren and 6 granchildren.
I retired from counseling at our high school here in Georgetown in 2005. I was off a year, returned part-time last year and am now retired again. We have two children and 3 grandchildren...ages 6, 3 and 1....and I'm trying to help with them as much as possible. I also try to get to MOnroe Co. at least weekly for a visit with mom. She is 92 and I am amazed at her mental alertness. (Daddy had Alzheimer's which of course was difficult for all of us to watch progress.) Yesterday, Mom told me some recollections of Jack and she said she wished she could think of something she could do for him. So we both decided I would try again to make contact (and after a couple of hours searching the internet today, I found you!)...and we'll surely keep each of you in our prayers!
My e-mail is rosalieWC@aol.com and my cell phone is 859-533-5251. NOw that I know how to find your blog, I'll be watching for up-dates...and I can hardly wait to share your news with Mom!!!
Rosalie Wright Calloway