Dinner Out

Tuesday a rep from social services came to evaluate Mike so we can go "straight Medicaid". If it goes through, we will then be able to switch to Hospice, BUT because of the program Mike's on, he can only dis-enroll at the end of a month. Since today is the end of July, we will now have to wait until the end of August. I will be praying that Mike stays healthy, especially during that time, so he won't have to go to the hospital.

Last night I had a wonderful dinner out, courtesy of a fellow spouse of someone with EOAD. Through the organization LIAF (Long Island Alzheimer's Foundation) and the local JCC this gentlemen, Pat Moffit, has offered to take spouses of EOAD out once a month as a type of support group/night out treat. He wrote a book about his experience with his wife titled, Ice Cream in the Cupboard. With the profits from that book, he is doing wonderful things for the Alzheimer community. He is giving back to both the above organizations and he is footing the bills for our dinners. Our hope is that we make it a monthly commitment. Last night there were 11 of us and we ate at a wonderful Italian restaurant in Roslyn. The experiences we shared were all very similar. We talked about getting the diagnosis and what our lives have been like since then. Of course, I was the youngest and it still takes me off guard when I hear that collective gasp when I tell people Mike's age at diagnosis. Most other spouses were in the early 50's when diagnosed - still too young to be dealing with this disease. Some spouses were still at home, others had to be placed in nursing homes. Whatever the situation is, it's heartwrenching. If an outsider saw us though, they never would have known what we were dealing with on a personal level, what we were all going home to. We looked like a group of friends having a delightful night out, laughing and enjoying the moment.

The only way I was able to go out last night was because of Courtney and Brandon. Mary leaves at 7 and Mike gets into bed right after that. Courtney and Brandon (with a little help from my brother) got Mike into bed all by themselves. They assured me that they would be OK and made sure I went out, even though I realized that we wouldn't have Nathan with us to help. Of course I sang their praises all night. I am very blessed.

My week at a Glance

Well we just finished our first week without Nathan...and we survived. I can honestly say that we all really miss him. His friendship with Mike will never be replaced and we will ALWAYS be thankful that he was a part of our lives all these years.

Mary did well. She's very nurturing with Mike. In fact when I first asked her about staying with us and I told her why, she told me that "it's not Nathan's fault. It's because he's a man and he was never a mother". Of course, that made perfect sense. She takes her time with Mike and he seems to be doing well. He seems to respond well to her patience. I just need to get past the constant comments from Mary telling me how to care for Mike, and how things were done a certain way in "her Country" (Haiti). She has always been like this and I knew I would have to now deal with this on a daily basis, but I feel this was a small price to pay.

The kids finished their last week of working at camp. Next week they will begin their first week of doing "nothing" and this is usually where the fun begins. Courtney and Brandon each get on each other's nerves. At least tomorrow through Tues. Courtney's friend Emily who recently moved up state, will be staying with us. I'm happy for Courtney and glad that she will have time to be wit her friends. Brandon has been visiting his friend Jonathan who hurt his ankle and is unable to get around. I know he just hates going over there and playing video games all day (LOL).

My brother is sick, yet AGAIN, with CVS (cyclic vomiting symdrome) which he has now had about an every other week. This is the most he has had it for as long as I can remember. He will stay in his room for days just throwing up and not eating. He barely gets liquid into himself (in fact in the past he HAS had to go to the hospital for dehydration). It's a terrible illness which research says it's due to stress.

That's my week in a nutshell. I continue to pray that Mike remains stable so he can remain at home.

The Basket Case and More

I would first like to thank my sister, brother in law, nieces and nephew for the MOST delicious Edible Arrangement they sent. It was beautiful and the fruit was scrumptious. What a wonderful surprise. I had previously thanked my friend Rhonda in Florida for the Cookies by Design platter. Cookies are our downfall.

Now I am at a loss. Today we recieved a wonderful fruit basket. The card was written beautifully and it mentioned that fact that this person doesn't "talk on a regular basis" with us, but there was no signature. It was sent by 1-800-Flowers so I called them to find out who sent it. The operator put me on hold while she called the "customer" to see if they could release that information. She came back on the phone and said he customer wanted to "remain anonymous". That's so frustrating. All afternoon I've been trying to figure out who would send something and WHY they wouldn't want me to know about it. I just want to thank them for being so thoughtful and for such a beautiful card.

If it was sent by anyone that reads this Blog, THANK YOU.

Is it Me?

OK, it MUST be me.

I get a phone call from my MOM today at 1:00 telling me that our aide, Mary, said she needs to leave because she has a doctor's appt. today at 2:45.!!!!!!!!!!!! Now, I saw Mary all weekend and this morning and she never mentioned anything to me. She told my mom that she had made this appointment a month ago and could NOT re-schedule it. What is that?? She said it is with a clinic, not a private doctor, and they basically give you the next available time. I feel REALLY bad, but I told her that she couldn't leave because I just couldn't get up and leave my job. She felt because my mom, brother and the kids were at home that they could take care of Mike. Even though he was going in for his nap, he would still have to be cleaned when he woke up and given dinner.

Is it me? Am I the crazy one? Nathan used to do the same thing. He would wait until the last minute and slam me with stuff like this, and then I would feel bad. If Mary had this appointment scheduled for a month, why did she wait until the time she had to leave to tell me?? Can you imagine doing that at your job?

I need to have a talk to her when I get home. I think it's because I'm such a sucker with these people. I just don't get it.

The process begins.........

This morning was weird, in that Nathan didn't come walking in the door at 8am. It's a strange feeling that I hope will get better in time. I can't stress enough how hard it is to not see someone who has been a part of your life for 4 1/2 years. I believe in my heart that the decision I made was the right one, but it doesn't take away the fact that Nathan will be missed.

Mike did well over the weekend. He's eating, it just takes alot longer and he eats less. I am hoping that the Medicaid switch goes smoothly so that we can proceed with switching over to hospice. I received the form from social services that begins the process for evaluation, and I'm concerned because it asks about "S's". If they deem Mike's level of care as too "high", they may deny the aide, which means we are back to square one. I just cannot fathom what's involved in trying to do the right thing for the one you love. Once again, I say that it's no wonder our government has no money. They almost make it impossible to care for a loved one at home, even though it would cost them MUCH less. I just don't get it.

I'm trying to think positive thoughts.

Today also happens to be the 23rd Anniversary of the day that Mike and I started dating. Boy how time flies.

A New Chapter

Today I spoke to Nathan and told him we are going in a different direction and wouldn't need his services. It was one of the hardest things I've had to do. I cried. He's been a part of our family for 4 1/2 years and has been a wonderful friend to Mike. He has been with us through some very diffficult times and it will be hard to imagine him not coming in on Monday morning. He helped care for the love of my life and I will always be grateful for him. I KNOW he cares deeply for Mike and I made sure he promised that he will come by and visit.

I pray that I have made the right decision. For now, it appears that I have. Mary has been taking her time with Mike and he's doing well. I have no idea what tomorrow will bring, but I can always be thankful for today.

Letting Nathan go is like losing a member of the family. It's affecting all of us and I just hope Mike is not too upset by it. I never know, what if anything, he's aware of. And so begins a new chapter of our lives.

Changes

Yesterday afternoon the kids and I along with my mom and Walter went to visit the hospice facility. It was a beautiful place and did not at all feel depressing. We went to visit "just in case" a time came when we could no longer care for Mike at home. It IS a sub acute facility, so if he went there, it would be at the very end. The surroundings were sunny and airy, they had a common living room, a meditation room, kitchen, sun porch and patio. It was so nice, my mom actually joked that that's where SHE wants to go.

This morning we had a representative from hospice come to the home to discuss "in home hospice". This is exactly what I was looking for, now I just have to deal with dis-enrolling Mike from his Medicaid HMO and getting social services to evaluate him for home care only. If we can get over that hurdle, then everything should fall into place.

I started the ball rolling on another HUGE change. We will be letting Nathan go. He's been with us for 4 years and we will miss him tremendously!!!!! He is currently on vacation. His 2 week vacation turned into 3 - which he always does. Apparently he missed his flight last Friday and could not get another flight back to NY from Jamaica until this weekend. During the time he was away, Mike's weekend aide was caring for Mike. At this point in Mike's life, he needs someone like Mary (who has been with Mike for 3 years), more than someone like Nathan. Nathan was a Godsend for Mike in the past and I will NEVER say a bad thing about him, but the past year or so he has become more unreliable and Mike definitely needs consistancy right now. He needs someone who will take their time when helping him eat and drink. No matter how often I have asked Nathan in these past months to slow down, he would not/could not do it. As much as we love Nathan, Mike is our priority. I must do what's best for Mike. Hopefully Nathan will understand . It definitely saddens me, but this is what Mike needs right now.

On top of all that, I am trying to find the time to take Courtney to see colleges. In September, she will be starting her senior year, and I REALLY need to work on that stuff. When I have all this going on with Mike, it's hard for me to concentrate on anything else. The decisions right now with regard to Mike are all consuming and I feel time is of the essence.

Mike is holding his own. He is eating/drinking, but still not as much as he used to. His smiles are not as frequent and I often pray that we are not "forcing" him to eat for our sake. That is my biggest fear and I've expressed it with Courtney and Brandon on several ocassions. Doing what's best for Mike, may not be what WE want and that is something that we will have to accept.