Rehab Follow UP

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Thank you for all of your support, love and concern. What a long, whacky, scary, emotional week this has been. I am exhausted. Literally. I apologize, but I must keep this one short, but know I have a LOT to say!

First of all, the doctor from the hospital called Monday to explain and apologize for his error. It seems after reading so many comments and messages this is an all too common problem and definitely one that needs to be addressed.

Second of all, Jim has been doing splendidly in rehab. He is just about back to his old self. I think he will make it pretty close to his baseline. His short term memory is still much worse and he is still confused a little, but overall, the difference is unbelievable. I honestly didn’t think last week at this time he would ever be coming home again. So glad I was wrong! He is slated to be released THIS Friday! He has been working hard and has improved so much, they are kicking him out. He had an infection in his lungs from silent aspiration. Scary stuff. As soon as the antibiotics really kicked in, he was a new man.

Many have asked why Jim isn’t on Aricept or Namenda. He was. I wrote about why he is no longer on these medications here: We Are a Team!

As happy as I am that Jim is recovering and doing so well and finding his sense of humor so easily again, I am scared. Seeing him the way I did, going through the emotional, gut wrenching journey with him in the ER and the hospital, seeing him so lost and confused….it is too much to play over and over in my mind, but for some reason I do. It is awful. I try not to, but I can’t help it. Witnessing the kids see their father in this state was utterly heartbreaking and  awful. I worry about what will happen if this type of thing happens again. What if I don’t come home in time to find him? He would have died. DIED. Like, forever gone. Do I now need to hire someone to stay with him? How will I pay for that? I am stressed to the max trying to figure everything out. Stressed actually isn’t the right word. Completely freaked out is more accurate. He is my responsibility just as much as the kids are. But I don’t know yet what the right answer is for our family. He is not ready for a home yet. There is a day program in our local area that would be great because they do activities with patients all day, but you must be at least 55 years old. Jim is only 52, so alas, he is too young. There is another day care place, but they are private pay and medicaid. If I was going to be able to pay, I would just hire someone to come to our home. The ideal situation would be to send him to some type of sports camp all day, every day. He would be so happy and have such a good quality of life. Volleyball, softball, tennis, bowling, basketball, racquetball, soccer…it wouldn’t matter. He would do so well. That would be my ideal situation for him. Not sitting around trying to figure out what to do. Not pacing the house searching for something he will never find.

Yes, I am so very happy, But at the same time, I am very worried.

Thank you again for all of the messages and the empathy. I am so grateful!

posted by Karen in Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (15)

15 Responses to “Rehab Follow UP”

  1. Jeanne Sapia says:

    One day at a time.. I have gone though things so many times and this seemed to work for me. Not easy to do, but it can be done. My prayers are with Jimmy and the family, Hang in there.

  2. Kate says:

    Thank you for the update. It’s great to know how well Jim is doing in rehab. What a huge relief!
    It just isn’t right that there are so few options for finding care for Jim during the day. I wish I had answers to share, but all I can do is empathize.
    My family is doing the End Alzheimer’s walk in Brunswick, Maine, this Saturday, in honor of my mother. I will be thinking of Jim, too, and of all the families who are affected by this devastating disease.

  3. Jill says:

    So happy that things took a turn for the better! Have a great weekend with you, Jim and he kids. I’m sure he was missed by all.

  4. Kimberly Smith says:

    I’m so glad to hear Jim will be home with you and the kids by the weekend. I know that scary feeling you’ve been speaking about. My husband’s scare was from an increase of his Aricept and adding Namenda. After a week or so, he became so confused, agitated and could not be still. Bedtime was just a nightmare. He would get in and out of the bed, over and over, every minute or so. He was miserable. The next day I called his neurologist and he removed the Namenda and decreased the Aricept to 10 mg. I don’t think the Aricept is helping at all at this point, no one but the drug companies. You really have to be careful and watch your loved one closely. I have found that my husband is very sensitive to medications. It’s like having a small child. You have to watch them closely, because they can’t tell you what’s going on in most cases. My husband gets choked easily now. I know it’s this horrible disease progressing and I worry about aspiration as well. Being a caregiver is a huge responsibility and a very stressful one as well. So many things to worry about. Take care and I’m remembering you in my prayers. Hugs, k.

  5. Marilyn Klotzer says:

    So glad that Jimmy is feeling sure you are exhausted and are still concerned about Jimmy. . My love and prayers with you and the kids. Hang in there Karen. Stay strong for Jimmy and the children.

  6. Lee Ann says:

    I’m wondering if the adult day care can make an exception for Jim’s age, since he is going through the same situation as most of their people. If you could talk to someone in charge and ask, I am sure you could get a letter from your doctor stating the advantages to Jim entering the program. Sometimes just asking someone in charge, instead of people that answer the phones…..

  7. Gosh, 52 is SO young isn’t it.

    The thought that my husband turns 52 this year (I am 32….) just brought that one home to me.

    I would never cope in your place…

  8. Christy T says:

    Thanks for the update! Love you guys and praying!

  9. sylvia silver says:

    I am glad to hear the good news.. Hope things go smoothly for you now..I met you and Jim last year at the walk by port warrick often thought had he was doing and how you were coping..I to have a patient I sit with 5 nights a week with The diease.. its awful..look forward to seeing you guys this years hope yall make it.. until than take care of yourself also..

  10. Joan says:

    Glad Jim is doing better,aricept did not work for my husband, memantine did, I think with younger onset
    Alz is a little different. My 75 yr old parents shake their
    Heads at the fate of their son in law who did everything for them! The Lord help us all!

  11. Martina says:

    Thank you for the update on Jim. I am so happy that he is doing better and is able to come home on friday. I pray that God will provide a way for you and Jim to have all of your needs met.

  12. Thank you for keeping us up to date. Only 52, how do you handle Jim, kids, work, and take 15 minutes for you. I am fortunate that Joe wasn’t diagnosed before 75. I need to count my blessing knowing Joe may live another ten years. He will be 86 in Nov. I have to keep my spirits up. Hugs to all.

  13. Anne says:

    My dear, my heart goes out to you, I can’t imagine how frightening this recent episode has been. My God, the doctor getting the meds wrong is horrifying! If it were in my power to grant you home health care I would. But thankfully you have wonderful friends who are there on a moment’s notice to carry you through. I will pray for you, Jim and your two children.

  14. Rose says:

    Hi Karen, Check with the VA. I think they have assistance programs that may help you with the costs of everything. Hugs, Rose

  15. Sue says:

    Is Jim a veteran? The VA paid for my aunt to attend a day care 2 days per week based on her husband’s service. Eventually that was not enough for her but it’s better than nothing. The Day Care is SO expensive!

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