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.

How does one live.............

Mike's been home for 5 days now and that's a good thing. I have not gotten a call back from the hospice coordinator, so I will be following up with them today. My goal now is to keep Mike out of the hospital for good, even if it means treating (or not treating) him at home. My hope is that hospice will be the support I need. For 7 years I have been caring for Mike and making all the decisions on my own. Unlike caring for a parent, when your spouse develops the disease, you're in this alone. There are no sounding boards, people to check with. I am hoping hospice will provide that support for me. If something seems wrong, I could call them to evaluate Mike. I won't be making the decisions on my own. Having never done this before, I'm not sure if that is how it will be, but that is in part, what I am looking for. Tomorrow, I hope to visit the hospice facility with the kids and my mom. It was a suggestion that at first I resisted because of my stubbonness in keeping Mike at home with us. But after some thought, I agreed and decided it would be good to check it out as an "option" just in case things down't go as planned.

These days I'm just having a hard time with everyday activities. How does one LIVE knowing that their loved one is so sick?????

Words/Phrases We've Grown to HATE

Diagnosis..ER..blood clots..anger/agitation..depression..foley..antibiotics..speech & swallow..pneumonia..hospice..breakdown..aspiration..pulmonary embolism..seizures..dehydration..ambulance..fever..contracture..myoclonic jerks..dysphagia..CtScan..hoyer......ALZHEIMER'S DISEASE.

Mike is home. Yesterday he had a decent day. He ate all his breakfast (2 pancakes, sausages and yogurt). He skipped lunch. For dinner he had meat, veggies and potatoes. He had yogurt again for dessert (with his medicine in it). Overall, he drank about 60 oz of fluids. He did not urinate all day, but did go overnight.

Today is not so good. He woke up dry, went into his nap dry. He's only had about 8 oz. so far, and 1/2 cup of yogurt. He only had a few spoons of my eggs.

As I mentioned previously, the roller coaster ride is getting more intense. I am not on the same ride as Courtney and Brandon and I am concerned...for all of us. The drops are much more intense and frequent - the inclines very far and few between. I am always looking for a way for the ride to stop, but I know that can only happen one way.

Coming Home

Hopefully today Mike will be coming home. Yesterday he "voided" quite a number of times on his own, so for now, he will NOT be coming home with the catheter. That's a good thing. He really didn't eat much for breakfast and slept through lunch, but he did OK for dinner. The kids and my mom and Walter were up at that time and I started to believe that he likes the chaos. He was all smiles, so who knows???!!!

I met up with the rep from HCN (hospice care network) yesterday at the hospital. She will be coming up this morning to evaluate Mike. I have no doubt that he will qualify, but there's an issue with Mike's Managed Medicaid Insurance. There's also the question about being able to keep an aide for the 11 hours we already have, since hospice only provides an aide for 4 hours a day. I was hoping that Medicare (hospice) could bill for the 4 hours and medicaid could bill for the 5 hour balance, but the woman I met briefly said she didn't think that could happen. Once again, I am amazed that even when a family wants to do the right thing, they cannot.

Not Today

Mike was supposed to come home today, but didn't. When they took the catheter out yesterday, he was not able to go on his own. They tried this 2 times with no luck. They had to put the catheter back in because if he didn't let out the urine, we were told it could lead to kidney failure. A urologist came in today and explained to me that very frequently patients with neurological problems have issues like this. They are going to try again tomorrow, and if Mike doesn't go on his own, they will need to insert the catheter for good. I'm not too thrilled with that because Mike's brother Rich passed away after he became septic from a clogged catheter. We have no choice though because Mike's body DOES have to get rid of it's waste.

I don't think I mentioned that they told me the other day that Mike has MRSA in his nose. I freaked out because I thought MRSA was dangerous, but I was told that this type is harmless because it's "colonized in the nasal passages". All I have to do is rub an antibiotic ointment in each nostril for 7 days.

I talked to the kids again today about hospice and of course, they were upset. As an adult knowing that there will be a time when Mike can no longer fight this battle, I'm having a difficult time with this. How can I expect Courtney and Brandon to? This is their dad. No child should have to go through this - EVER!!!!

The Unknown

I would first like to thank Rhonda for those delicious cookies. What a wonderful surprise and totally unexpected. Thank you to Aunt Barbara abd Uncle Bernie for your beautiful e-card. You ALWAYS know how to make me cry.

With any luck, Mike should be home tomorrow. He's slowing down alot and I have begun to make calls about hospice. My goal will be to find one that will work with us. The kids and I need to know that we will have done EVERYTHING we could. We do not know at this point if Mike is slowing down because of the infection or because of the progression of the disease. Our situation is the classic example of The Boy Who Cried Wolf. Quite a few times over the last few years we have been told, "it's the beginning of the end", "expect the worst", but Mike has always bounced back. Had we given in when we were first told this, we wouldn't have had the last 3 years with Mike. We have no idea what to expect when the time comes, because we have been given such wrong information before.

I imagine the next few weeks and months will be QUIET difficult. Only time will tell. I've already told Mike that we will do whatever he wants. He may not be able to speak with actual words, but he will let us know in his actions.

Life goes on

Today wasn't Mike's best. Breakfast wasn't great, but this has been a pattern and I was expecting that. He seemed to be enjoying his lunch, but we were interrupted by him being transported for a chest x-ray. We tried to postpone it, but I was told it would have been in the middle of the night and I didn't want to NOT be there to go with Mike -AND- I also didn't want him awakened for that. So instead, he never got to finish his lunch. When we got back to the room, he had his respiratory treatment, so he never got to fisnish his lunch. For some reason, he wasn't into dinner either. He ate, just not alot. He had a much better day yesterday. My concern, as always, is that I'm not sure he eats enough to sustain himself once he gets home.

Courtney did get to go out for a little with her friends this afternoon, and for that I was thankful. As is usual for her when Mike is in the hospital, she tends to be glued to my side all weekend while I'm there, against my better judgment. She agreed to spend the afternoon with her friends and that was good.

My brother and Brandon got our TV out of the storage unit and I am pleased to say that our old TV is now up and running. My brother's 52" TV is on our backyard lawn. H doesn't have the money to get it checked out, so he will probably "junk it". I didn't realize it was about 10 years old.

We still have the leak in our sideyard faucet and I can't imagine what our water bill will be like. The dryer still doesn't work and I still have the pain in my side. On a lighter note, we are all very blessed with so many things in our lives and I vowed to try harder not to dwell on the negative. In Brandon's words of wisdom, "no matter what happens mom, we will be OK". Amen.

Every Now and Then...

I often wonder if things would be different if I had a bigger support system.

All I wanted to do today was sleep a little later, but I can't. I need to get to the hospital to give Mike breakfast. If we had more family/friends around, I wonder if they would offer to go up to the hospital and help while I got a few hours rest. Yesterday my mom and Walter came to keep Mike company for a few hours, but that was so I could do shopping at Target...not to get rest.

My family consists of me, Mike and the kids, my mom and Walter and my brother (my sister and her family live 3 1/2 hours away in PA and I KNOW it breaks their heart that they are not closer). This is all we have. Mike's family is all gone, and the one brother he does have, has not been in touch with us in about 5 years. I have friends, but none close enough that I could count on to help. This disease is so horrific, and it's even worse when you're doing it practically alone.

I imagine coming home from the hospital and having my lawn mowed, dinner made, the house cleaned a little. My house (inside and out) is a MESS from Mike being in the hospital the last 1 1/2 months. This is life, but every now and then I imagine what it would like to have a big family who would be able to help us. I imagine getting a fruit basket, cookies etc. delivered to the hospital for me and the kids to enjoy while we care for Mike. I know it sounds selfish, but every now and again I imagine what it would be like to have more help, to have more people who care enough to help.

I have a feeling that this is "normal" for people living with Alzheimer's Disease. The feeling of abandonment, loneliness, isolation - because the people we DID once have in our lives, that could have made this journey more bearable, have all disappeared. When I think back to all the "FRIENDS" Mike and I had in our younger years, before things took a bad turn, I can only imagine how much easier things could be if they were still in our lives.

No Way Left But Up

Sorry for not updating sooner but to say things have been crazy would be an understatement. Where does one begin, let's start with Mike.

I have spent 12 hour days at the hospital for 5 days so far and have not seen any of his doctors. I assume they must come in before I get there at 9am. I HAVE spoken to the Resident on the floor and that's who's been keeping me informed....as best as she can.

--Mike's EEG results came back "normal" with no sign of seizures. Huh?! What were those episodes that even the respiratory specialist categorized as one? I was informed that they are just a normal progression of the disease. They cause no pain/harm to Mike and there's nothing we can do. Some days he's had quite a few, other days (like today) only 1 or 2. Not the best answer, but an honest answer nonetheless.
--Mike's x-ray of his abdomen showed no signs of blockage, only "poop". With the help of the colasce (sp?), He's been going regularly everyday so far. His fist clenching has stopped and he's eating a little better, but still not as much as he used to. I can only assume that this is also another step down in the disease process, although no doctor has said the same to me.
--Yesterday he was given another patient's antibiotic (thankfully it was the same kind and dosage) and today I noticed a horrific rash under his arm. Apparently when he is washed in the morning, they just keep adding powder and they do not clean it. I can't even begin to tell you how red and sore it was. It was so bad that it was bleeding. The nurse gave me some bacetracin to put on it after I cleaned it. I actually cried at the sight of it and felt partially responsible for not seeing it sooner.

On to other things....
---I've had a pain in my side for the last month. Sometimes it hurts so much to even walk. I wanted to make an appointment with my Dr., but can't plan anything not knowing what's going on with Mike. The whole thing makes me nervous because the pyschic I went to last year said to be careful about my left side near my ovaries.
---I've had a leak on the side of the house for about a month now that has not been fixed. When I had some extra money, I didn't have the time to arrange a plumber to fix it, now I have neither.
---The other night, after a long day at the hospital, we came home, ate and put on the TV. Shortly thereafter, it made a popping sound and then went out and started smelling like burnt plastic. We've had no TV for about 4 days. This one was my brother's, so hopefully one day soon we can get to his storage facility and get our old one out to use. In the mantime I have no idea where we will keep this 52" TV that he wants to see if it can be fixed???
---Two days ago I was at the hospital and my mom called me to tell me my clothes dryer broke. C0uld it get ANY worse???
---That same night Brandon yelled down from upstairs that the toilet handle broke. My answer to that was "of course it did". Should I expect anything less these days???

I am being tested to the maximum right now and I am not sure how much more I can take. I pray everyday for answers and for the strength to get through this low time in my life.

Back in the Hospital :(

Mike had been doing well all last week. Nathan left Friday for a 2 weeks vacation so of course I got nervous. Mike usually always winds up sick when Nathan goes away. On Saturday, Mike had about 6 or 7 "shaking incidents". I was concerned that they were "S's", but I had never seen any other kind than the grand mal, so I wasn't sure. Sunday he did well all day and Monday he was OK until he got up from his nap around 4pm. Courtney called me at work to tell me what was happening (heavy breathing). I left work and got home. Mike's face was beat red and he was burning up. His tempt was 101.4. I called his doctor and he told me to wait it out. By 8:30 Mike seemed to be having problems breathing, so I called the ambulette.

By the time we left for the hospital, it had occured to me that Mike had not had a BM in 5 days. At the ER they said that that can sometimes cause a fever. He was admitted again because of the fever and the fact that he had just had pneumonia. He had another "shaking episode" in the ER.

Once again I was exhausted from not sleeping for another night. We got to the hospital at 9:30 p.m. and I did not go home to shower and change until 10:30 a.m. the following morning. I was able to do that only because my mom and Walter came to sit with Mike and try to answer any doctor's questions. Another all nighter.......My brain was fried.

With yet more help from our friend Jean in Patient Relations, Mike was moved back to the room he had just left last week. It's a private room and allows me to have someone with Mike all the time. The issue with this hospitalization is that Nathan is away, so I had to be at the hospital all day. I left the house at 8:30 in the morning and got home at 8:45 tonight. Even if Nathan was around, I couldn't have had him go up the hospital because I can no longer afford to pay him. The last hospitalization cost me approx. $2,500 out of pocket, and that did me in (I write about this only to stress the fact of how this disease affects so many aspects of our life - especially the financial aspect. This kind of hardship is all too common).

Because I had mentioned the shaking incidents to Mike's neurologist, he ordered a 24 hour EEG. Mike was prepped and set up with a 24 hour video monitor. About one hour after the hook up, the respiratory person came in to give Mike his treatment (a nebulizer t help losen the phlegm). As soon as he started moving him, Mike had another incident. Both the resp. person and the nurse were in the room and they said it was most likely a "S". Twenty minutes later, he had another. Three hours later, yet another.

I really HATED leaving Mike tonight. Even though everyone says that people don't feel the "S", I feel bad that if he has one during the night, I will not be there to comfort him. The aide that works nights told me that Mike had 2 episodes like that last night. She wasn't sure what it was either.

So now the question is - what is causing these? The infection? The medication? The affect of the antibiotic on the anti-S medication? Is Mike dehydrated? Tired? Is this the disease taking over that area of the brain? I have no idea. His 24 hours of testing will end tomorrow afternoon and then the results will have to be reviewed. Friday is the 4th of July (looks like no BBQ for us this year) so I'm sure nothing will get done over the long weekend.

They also gave Mike an enema and he went to the bathroom. His white blood count was back to normal as was his fever.

As ALWAYS, what makes this so darn difficult is the fact that Mike can't speak. I am grasping for any signs of discomfort to explain something that may be going on. I had a meltdown in the hospital room this morning and the nurse came walking in. I didn't care, I am tired. I just want to know what's causing these S's and to know that Mike isn't in any pain.