Will keep you all updated. He has had a real struggle. We did find his biological parents 10 years ago - no one in the family has diabetes! Also his parents had married and he has 5 siblings. He was our "only" child and what a delight he still is. His attitude is wonderful. He feels so bad because he can't be here to help me with DH, but he lives in S.FL, and can't sell his house!
Good news actually on our front as well. We have two "natural born" sons who have done fine, and a daughter adopted at birth eight years after the younger son. She struggled with depression much of her life, only to find out that her natural mother and HER sibs and HER father were all seriously bipolar. Paxil has helped daughter to keep on an even keel, and a job as a clerk at a pharmacy is "below" her education level (she did finish college, eventually). But she's great at her job. All the little old ladies at the senior living apartments across the street love her, and she's so nice to them and to others that she's been cited as being one of the top people in her (22-store) district. She's felt embarassed about being a clerk although she likes the job, likes her boss and co-workers, and it's nearby and comfortable for her - but this gives her a lot of validation, and she's been flying high! And of course when she does, *I* do. (we found out not too long ago that her biological mother had died, of cirrhosis of the liver, as had her father. Although she'd met her and occasionally corresponded, she was not close.)
She does live with us, and is occasionally impatient with her dad but never lets it show to him!!!
What a great idea to share good news! I often think that "good" things don't happen anymore.........If so, I wonder what will go wrong...
However, my good news is my son. He graduated from Cornell University on December 20th and has returned to Cornell to work on his Master's Degree in Engineering, with a specialty in Biomedical Engineering. He is working on an Alzheimer's Study and so far, his professors (neurosurgeons) are excited! Naturally, we are very proud of him, not only for his academic achievements, but for being a good person.
Due to the progression of this disease, we were unable to attend the graduation. I don't know when I have felt so low........however, our son did all he could do to make me feel as if it was "okay" not to be there. His roomate and girlfriend played the part of his parents at the graduation. At least we looked young! LOL
That's our good news. Sure hope we all can add to this string often!
Our good news is that our Daughter and SW's sister and her daughter coming for lunch tomorrow and they bringing lunch . So we will have a FUN day . Always great to see people . This isolation not good all the time
Ann, please let Sunshyne know more about what kind of AD study your son is involved in. If his neurosurgeon professors are excited, he must be uncovering something good.
I was able to go out to dinner last meet with a friend I haven't seen in 19 years. She was a bridesmaid at our wedding and when we got together it felt like we had never been apart for that long. It was a wonderful time talking to a grownup. It was also easier to talk about my husband as her father had passed away from alzheimers so she understands some of what it going on. We are going to try to get together every few months now and not let the time go by. Friendships like these are precious.
Good and exciting news for me...My fingernails are stronger and GROWING. I have been aware but yesterday daughter commented on my nails. I have always had soft nails and they would break off all the time. Now they look like the acrillic nails if I had polish on them. Trying to figure out the change and the only thing I can come up with is I am taking fish oil and flaxseed oil capsuls. Any feedback on this????
Sorry it took me so long to reply.....just had a fall and did some 'fine' damage to my knee......I'll know more on Monday.........BUT, this is about GOOD and EXCITING news!
My son has just started working on this idea and it will take years, I would imagine, to actually make it to clinical trials. He's just 22, and working so hard to help his father fight this disease. As he says, it won't be the answer, but certainly could be a part of the puzzle.
I will ask him if I can post his findings online. I'm not sure how that works, but if he can share it, I'm sure he will. If not, perhaps he could explain the basic findings. The only part that I understand is that it has been found that iron builds up in the brain cells of Alzheimer's patients and I believe this is a way to release it. Thank goodness HE is the one doing this since I can't even explain it!
Just found out today that my husband was approved for Social Security Disability. We have to meet with them tomorrow to set me up as representative payee. Has anyone had experience with this?
I have had a fun couple of days. I still can't believe I did it but I was really bored and the walls were closing in on me. I went to Facebook and set up an account. The children and grandchildren use it, so I thought it might be a good way to peep into their world. In the first 10 min. I got a post from two of the kids (now about 50 years old) who grew up in my back yard and were friends of my daughter. And it got better from there...I heard from grandchildren who live out of town and were amazed that their ancient grandmother was doing such a thing. I even was called COOL and how great is that. My son accepted me as a friend with warnings that he got he got outragious sometimes. My daughter said...way to go, mother. Anyway it was fun learning something new and took me out of the Alz world for awhile. By the way my son is crazy and a very happy person who marches to his own drummer. They say an apple does not fall far from the tree but I think he just kept rolling down the hill.
I've held Representative Payee status for my DH since 1988, whn he went on SS Disability. Basically it means his checks come to you for him. They can be (are usually Direct Deposited to a Bank (Credit Union?) account in his name with you as co-owner or Authorized . You are responsible for how the money is spent and once a year you'll be sent a reporting form to complete and return, reporting where the money was spent. It is not lengthy nor difficult. There are threads about Social Security Disability and about this.
The key, I've found to dealing with this is to provide any requested information completely and thoroughly, and meet or beat every deadline.
My good news is that though my Mom is terminal, she IS getting stronger!! Yesterday she was able to make herself lunch all on her own! I know that seems so small, but giving she couldn't even stand on Christmas Eve, and that they thought she wouldn't survive the night, I am more delighted than I can put words to!!
You know, I can't help but think about that word terminal..... maybe I have my head in the sand, maybe I just don't like that word being used in the same sentence with my Mom! But, I can't help but think, it is a useless word. Lynn is "terminal" too. All our AD spouses are. The word doesn't give you a time line, it just means, eventually you will die from your illness. In that case, aren't we all "terminal" to some degree? I know that is being maybe too philosophical... but it helped Mom with her fatalistic thinking.
I had a long talk with her about it. The facts are, many people have outlived- by years -the time line doctors gave them. They can't give us a time line with Mom. But even if they could, the fact remains that she will go only when it is her time. Why not enjoy the time you have!! Get as strong as you can, so you can do the things that bring you joy. I think it really helped her :) She is fighting with all she has. She amazes me :)
Sandi, thanks for asking.. as for how I am doing? Better than I have in simply ages! The increased dose of seroquel has brought a measure of peace to my home. I know what I have to do... guardianship, and place him in a nursing home... and I am taking the steps needed to do so. It is hard!!! But, having finally faced the truth, I am somehow finding the strength I need to see me through.
The guardianship hearing is Tuesday. The nursing home is a bit more difficult. I have some applications in, but the waiting lists are long. (could be over a year!) But, I am asking for help. I have in the past as well, but nothing ever happened. Now, I am just firm. I told his children that I would like to wait for an opening at the nursing home we all like, but I needed some breaks if I am going to keep him here. I can't do this alone anymore. I just can't!! His son is taking him Sunday so I can go to my families get together for my Mom. So far so good!
Saw "Fiddler on the Roof" today. Everything came together. Friends brought lunch, then respite worker arrived and we left. Got there with plenty of time to pickup tickets and get seated. The way they worked it with 2 sets of main cast of characters and the way the play was staged, everyone had a share of the limelight. My Brother made a wonderful Tevye (never knew he had the talent for this) and his son had the 2nd male lead. Several people remarked that it was refreshing to see a performance where everyone right down to the youngest villagers had something special to do. The cast was huge and they worked their buns off, learning all the dancing, and songs, and dialog. All from a smalltown Theatre group. And whn we got back, everything here had gone just fine too.
Now I will post some good news. My daughter is expecting in May. This is my first grandchild. Since I am laid off, I may have more time to spend with the baby when he is born. She will visit in March with her MIL. DH is already getting a little agitated thinking his schedule will be disrupted. I just try to ignore him.
Lizbeth, congratulations....what a treat you are in for.....grandbabies are the best!
If there was one good thing that came from my husband having AD was the fact that I quit my job to stay home with him when our first grandchild was only a few months old...I have been able to have a really up close and personal relationship with all of my grandsons...The oldest will be 10 this year, and it hardly seems possible.
Since we've all had a really rough week, I thought I would share some good news for a change. On March 26, 2009, my sister became a Grandma for the first time. Which makes me a Great Aunt for the first time.
Which makes my father, who turned 91 on April 1, 2009, a Great Grandpa. Although his body is failing him, his mind is as sharp as ever. To talk to him on the phone, you would think you were talking to a 50 year old.
In August, my sister, brother-in-law, the new parents, and little Delaney Quinn, my new Great niece, are taking a road trip from the Chicago area, where they live, Eastbound to visit relatives and sightsee. One of their stops will be Rhode Island, so my father can see his first great grandchild. Sid and I will meet them in RI, so we can all be together.
I might get to be a grandma again! My youngest daughter who has been divorced for 5 years got remarried last month. Her new husband has never been married and has no children of his own. Soooooooooooooo they think they will give it a shot. A new baby will be nice.
My son went on the national transplant list for pancreas and kidney April 1st = after about a year of testing at two transplants centers! Finally made it - at least on the list!
ehamilton, I think it is very interesting the way times have changed. When I had my kids, we told our parents when we were a month or two along and then told others when we began to show. Now my grandkids tell me when they decide to try to get pregnant and call the minute they get a positive pregnancy test. Yes, things change.
I have not had any grandchildren tell me they are going to try for a baby, not that it is not possible, my oldest grandchild is 23. Guess I wouldn't mind having some "greats" around.
My granddaughter had TWO heart transplants, one when she was 6 and the second when she was 9.(Heart was fine, she had an arterial rejection) She's now 23 and beautiful!. Krissy has low resistance to virus and bacterias, but still leads a relatively normal life. The new anti rejection drugs are much better and have fewer side effects than cycloporine did. The first time she was placed on the UNOS list, they got a call (found a heart!) in 30 days...the second time, in only took four days.
Two funny stories re: the transplant and Krissy. She developed cardiomyopathy when she was 2, so pediatric cardiologists were her buddies. After her first transplant, she told the doctor she wanted to see that bad old heart ..and they took her to the lab and showed her. I forget the size, but it was much much larger than the new one she had received in the transplant.
When she went in for her second transplant, she begged the doctors not to put her to sleep so she could watch them take out the old one and put in a new one this time.
The doctors say most adults have huge cases of nerves and face great fears when they know they are about to have their hearts cut out .......... and it's really funny to have a little 9 year old patient who's only request is that she get to WATCH the transplant procedure!
I understand that completely. My little grandbaby was number 6 out of 16 experimental live donar liver transplants done in Chicago in 1990. My daughter gave half her liver to little Amanda who turned one year old three days after the transplant. We were in Chicago for 6 weeks and after 8 operations, we went home to Primary Children's Hospital in Salt Lake City. She was there for another six weeks and then off and on until November. She too wears her scars like a red badge of courage and believe me she has a lot of scars. She's very comfortable and proud of them and never even flinches when they have to draw her blood every six months to be sure her anti rejection medicine Prograf is keeping her immune system in check. That was 19 years ago and today live donar liver transplants are done in Children's Hospitals all over the U.S.
Our little Amanda is a beautiful young girl who will celebrate her 20th birthday in two weeks. She is so sweet and has a way like no one else with her grandpa. Even though he doesn't recognize much of anything these days, he does come alive when she comes in the room. She talks to him and makes him laugh and for a few minutes, he comes back to us. God love her..........I love her! She's always been nothing but a blessing.
Anitalynn, I have ANOTHER granddaughter who was diagnosed with Liver Cancer the week after her first birthday (coincidence,huh?) She had chemotherapy for about a year,..and then they removed all but a ittle lobe of her liver. Since then, her liver has regenerated and is healthy. The sad thing is that the chemo affected the nerves in her ears and she has a hearling loss, (not profound), but enough to make her speech sound abit like she is tongue tied. She also has trouble with her bladder and bowel functions due to nerve damage. She is 12 years old, and participates in on going studies at Texas Children's Hospital. Her overall health is excellent,...just the problems that came from her chemo. The hearing will not get better, but the doctors feel certain that the other problems will improve considerably.
The liver is one of the most amazing organs in the human body. According to Amanda's doctor, it's the only organ that will regenerate itself. My daughter's liver had grown back to it's original size before we left Chicago......says her doctors.
That chemo is a life saver but it's also wicked on the body. If your little granddaughter is only twelve and improving all the time, she probably will grow to an adult and most will never know she had a problem. If we could have seen ahead many years ago and know how wonderful Amanda would be by the time she turned 20 years old, it would have saved a lot of grief and grey hairs. So hang in there.........it just gets better!
I forgot to add that when she was little, she was very proud of showing her "boo-boo's".......... and would lift her shirt and show anyone who asked. She speaks of the "little baby who was vsery very sick" as if it was another child. What a miracle!
Kids who have these dreadful things happen often turn to becoming doctors, to heal others like they were healed. It will be interesting if any of these remarkable young ladies do! Congratulations to them all!
Something else strikes our family about Krissy and Shelby (Krissy is the one with heart transplant - Shelby had liver cancer). When they were very very small, from age 1 year forward, they spent countless days in the hospital. Now they are healthy and thriving. What's unique about these two girls is their depth of compassion for other children who are ill, handicapped or have other difficulties. They are literally, magically, drawn to these children and show a level of understanding that makes the hair stand up on the backs of our necks.
They have an inner sense - like radar - that enables them to find these children, wherever they are. On the surface, one can say, "How sweet!".............but beneath the surface, one asks, "How do they know???"
Something to look forward to. Our youngest (son) is getting married in Oct. His fiancee is a lovely girl and they are perfect together. Last March said son had a heart attack at the age of 30. After a stent opened the artery his then girlfriend and I were allowed to see him. I said "I love you..get married..have lots of babies..SOON" That's exactly what they're doing! DH may not be able to attend the wedding so our middle son will escort me to my pew and I will leave the seat next to me vacant and imagine my husbands pride and happiness. Keep sharing the happy things!!
For the first time..... drum roll please......I took Lynn downstairs to the main entertainment area today!! He didn't exit seek at all!! We had a great time :) Later, my sis and niece came with me and we took him down to the formal dinning room for dinner. So wonderful to see him not just in bed!!
He is still not eating much, but things are really looking up!!! I am hoping soon I can involve him in all the activities they offer. There are many!!! Then later perhaps I can start taking him outside. He can have his own garden patch :) Then maybe even venture off the grounds for lunch. Keeping my fingers crossed.
My heart is light. For the first time in YEARS!! I can see some light in the dark hell of AD. I am sooooooo glad now that I placed him. I never thought I would say that! Such a wonderful day, I just can't get over it <BIG GRIN>
It's late, and I have to try to get to sleep... but wanted to share some good news!!! I will try to catch up on the posts tomorrow. Much love, Nikki
Dear Nikki-sometimes placement really is the best solution. So happy you are feeling better. When Bill is looking better at my visit friends say I have a smile on my face the whole day.
I love this! It's great to hear good news, no matter what the source!!!! And I just so happen to have some to share!
My wonderful daughter Courtney has set the date for her wedding! She very much wants Jim (her step-Dad) to give her away, so they decided to forego the big wedding in favor of a small July 18th wedding. Jim is so proud. Courtney is adopted, has had a very tough time, in the past. She was my "problem child", lol. She has worked so hard to pull her life together. She is now a Medical Assistant, hoping to pursue her RN eventually. She works taking care of Mentally Disabled Adults at a Day Care. She administers the meds, does one on one care and delights in every moment of it! Am I proud? You betchya!
My son Jeff, 22, is a junior in college. Last year he decided he wanted to major in psychology and pursue his PhD. We were thrilled. He has decided to change his major to Biology, with a minor in psychology and go for his MD!!!!! He is a 2nd degree Black Belt, a very talent goalie (hockey) and works 6 nights a week for a Hockey Clinic, coaching all ages, from the little goaltenders to college goalies. In the summer he does weeklong (sleepaway) camps for the same Clinic and is the one the coaches come to when the little ones get homesick! With all this he maintains a 3.75 or better GPA! Am I proud? You betchya!