Not Enough

I am having a VERY difficult time accepting the fact that many times - my best just isn't good enough. The past 9 years are beginning to take it's toll on me, and more and more, I find myself neglecting things that are quite important. My mind is full - too much for one person. I don't see a light at the end of the tunnel, and the burdens I carry are many. I wonder if God will get tired of hearing my prayers??? People ask how I have done it all these years and this is why. At my lowest of lows, I turn to prayer.

I LOVE my kids......

As I was looking through some recent blogs and their comments, I came across this one from Courtney. She had written this in response to a comment that she (as well as a few others) found a little condescending from an "Anonymous" blogger. It was so nice to see that someone has my back - and I'm glad it was my daughter. I write my blog knowing that I open myself up to everyone, so I should expect that some things I write will not be appreciated by all. I accept that, but I was proud of what Courtney wrote and wanted to share it. I hope she doesn't mind....

Dear Anonymous, whoever you may be-My mom is totally aware that other people have it worse than she does. In fact, she says this so much at home that it's kind of frustrating sometimes ;)My mom uses this blog as a way to vent. She needs it. She doesn't do much for herself because she's always focusing on my dad. And as for the financial issues with college, trust me, we are TOTALLY aware that this is the case. I DO have other friends in college too, and they're also experiencing financial difficulties. HOWEVER - the difference here is that this financial difficulty with college costs is NOW piled on top of everything else that my mom has to worry about, so it's just an extra little thing she doesn't need to deal with. Trust me- we all thank God every day for everything He's blessed us with. Just the fact that my dad is still healthy and with us at home is enough. But sometimes, like I said before, my mom just needs a place to vent, and she uses this blog as a place to do that. Without venting, she'd probably explode, and nobody wants that! :)Anywhos...I'm done :)
April 25, 2010 2:31 PM

Fever

On Saturday, Mike had another fever - 101.9.
Mike had been struggling with his "gurgles" on Saturday. After dinner, he aide left and he started getting more gurgly. I did everything I could to try to coax him to cough - his neck massager, chest P.T., the nebulizer, rubbing his back..but nothing. Then his breathing became labored and I knew what would be next. Sure enough, his face became flushed and his temperature was 101.9. I picked the kids up from the train station (they had gone into the city to see American Idiot so my brother stayed with Mike for a few minutes while I got them) and then we got Mike into bed. We did more chest P.T. and nebulizer, I used the neck massager again and I thought after we rolled him over as I got him changed, it would help losen things up. Instead, Mike seemed to begin to have more problems breathing. I put the oxygen on him and tried to calm him. Courtney was a little upset - she's been at school since September and has had less time with Mike than she has had in the past, so she was not used to his potential issues. I gave him a Tylenol suppository and by 10pm the fever broke.
When he woke up yesterday, he still had the gurgle. My biggest fear is the day he won't be able to cough up the mucus (the mucus is built up because of Mike's continuing problem with swallowing. At some point, he will not be able to swallow at all, and therefore, he will stop eating. This is what Alzheimer's does. The brain stops working and therefore, cannot tell the body what to do). We had yet another aide in on Sunday, and she too was very good. We tried once again to get Mike to cough up and FINALLY by late morning he did. He coughed and sneezed for some time. When we got him into bed, he still had some gurgle and he coughed that up as he began his nap. He slept soundly, thankfully.
Mike's friend Tom, came to visit while he was sleeping. He's our angel in case anyone doesn't know. He's Mike's ONLY friend that ever visits.
Courtney and I were in the dining room while Mike was having dinner. I heard him cough, but didn't think anything of it. A few minutes later, the aide was in the kitchen washing Mike's dish and she said, "Boy, you should have seen the mucus Mike just coughed up!". This was the last of the menace that was creating the issues and fever for Mike and he FINALLY got it out.
Last night he slept soundly, without fever, but I was up all night checking on him. I'm glad this wasn't the day I dreaded.

A Saint I Ain't

In my day to day activities, I am constantly going, and quite often don't get a moment to reflect. I am glad that I'm always running because when I DO get a moment to stop, I usually always end up being sad and getting emotional. I've been reminded alot of how "blessed" I am, and in my heart of hearts and deepest reaches of my soul, I know I am. I am healthy, my children are healthy, I have a home and a job. These things I NEVER take for granted and I thank God every day for blessing me and my family. But I am only human and a "saint I ain't".


Each morning I wake up and look at Mike lying next to me, completely unaware. I believe there are times when he knows who is with him and he recognizes voices, but for the most part, he is not my husband in the very essence of the word. I wake up and start my day by crushing his medicine and pureeing his food. How many other wives have to start their day doing this for their husband? I then mix his drinks for the day with "Thick-It" to help prevent him from aspirating. How many other spouses need to worry about this during the day? When I get home from work, I shave Mike. Is that also something that is common for wives to do? After we eat dinner, we get Mike into bed and I change his diaper and clothes and wash him before bed. Yes, I am blessed, but how many other spouses can say this is a part of their daily routine? I love Mike with all my heart and soul and I take care of him because I WANT to. I would like people to think about their your own blessings before they complain about little annoyances. Look at the big picture. I may ocassionally be been surrounded by good friends and a wonderful family, but that does make make my loneliness easier to deal with. It does not make me feel better at night when I'm lying next to my terminally ill husband. We have been living in limbo for NINE YEARS - how many others have done that?


At the heart of things, I am an upbeat and positive person, but there ARE days when I truly feel like not getting out of bed, but even THAT is not an option. Sleep in, I can't remember when. Alzheimer's Disease is despicable, Early Onset Alzheimer's Disease is WORSE. What were you doing when you were 36 YEARS OLD !? Were you getting lost while driving? Were you forgetting where your children were? Did you get fired from your job and get scared s*#t about why you couldn't remember things? Were you telling your spouse that it would be OK to get married again once you passed away? Were you depressed because you would NEVER see your children graduate from High School, get married or reach other milestones in their lives? Are you the spouse of someone going through this - having to watch them wither away to nothing? There are many debilitating diseases, but not very many like this. I have not heard Mike's voice in almost 6 years. Take a moment, think about that....

I don't have as much as others, yet I am better off than many. I am human and I hurt. I struggle each and every day to look at the bright side of life. I constantly pray for a cure for Alzheimer's Disease, please do the same.

ReVisiting Old Thoughts

Some 20 years ago, before Mike was diagnosed, we tried to visit Mike's grandmother as much as possible. She lived locally and she lived alone. We tried to keep Courtney and Brandon close to their Great-Grandmother, but there were times that Mike and I dreaded the visits.
You see, when her daughter Barbara (Mike's mom) got sick and eventually passed away, her world ended. As a young mother myself at the time, my heart broke for her. No parent should bury their child. After her daughter's death, days turned into weeks, weeks turned to months and months turned into years, yet she remained as emotional as she was the day she passed away. There was not one time that we visited Mike's grandmother, when she did not break down and cry. On one particular visit, I remember saying to Mike "Instead of her focusing on what she DOESN'T have, she should focus on what she DOES have. If I should be blessed to live to her age, I hope I will see things differently".

She lost her only daughter to a cruel disease - yet she still had two sons who loved her very much and remained in her life. One lived out of state and called her every week. He and his wife would visit a few times a year. Her other son lived locally and he called her every day. She also had Mike and his two brothers, along with their respective wives and children. I saw an older woman blessed by being surrounded my family and instead of being thankful for the family she did have, she continually mourned the person she lost.

Lately, I've been finding myself repeating my own words of wisdom...I need to be thankful for what I have, instead of dwelling on all I lost.

I've been feeling sadder than usual lately, for me, Mike and the kids and all that we have missed out on as a family because of this disease. The other day at work, an attorney left work early to take his young son to the Yankee opening game. When they walked out of the office, I teared up. The thought that Mike and Brandon will never share another ball game together hit me hard.

When Courtney gets upset because she cannot go to the college of her choice due to Mike's illness and the financial impact it's had on us - I feel like I've let her down as a parent.

When I hear co-workers talk about holidays, vacations etc. I think of all that we "could have" done.

I need to remind myself constantly:
- I should be thankful for the fact that at least Mike and Brandon did attend one Yankee game when he was well (other children haven't been so lucky).
- I should be thankful that Courtney earned scholarships that allow her to attend college (which other children don't have).
- I should be thankful for all the holidays and vacations we DID have when Mike was well (allbeit the kids were often too young to remember them). We were blessed.

What I need to do is revisit my own thoughts every now and again. Sometimes the best advise you can take is your own. Instead of mourning the life we lost, I should appreciate the life that we now have.

Resolution

After two months of countless phone calls and with no resolution in sight from hospice, I decided to ask Mike's aide, once again, if she could stay with Mike when we go to PA. THANKFULLY she said "yes". Despite the fact that under Medicare, Mike is entitled to 5 days of respite, I will be paying someone out of pocket to stay with Mike.

After we settled that, we checked out a facility for Gizmo to stay while we are away. It's called "Best in Show" and is a unique pet resort. We took care of all the particulars in less than an hour. I'm convinced that Gizmo will not want to come home after we return.

I can now rest easy that all plans are in order and can only pray that everything will remain status quo. I have never ignored the fact that Mike's health is still very fragile and I will be nervous while we are away. I will feel good knowing he will be staying at home and you can bet my cell phone will be firmly planted on my body.

Respite Saga Continues.....

Four weeks after the push to find respite began, I am still no where near a resolution. Even with the support and connections of the President and CEO of the Long Island Chapter of the Alzheimer's Association......nothing.
I'm not sure anyone of importance "gets" the fact that I am VERY nervous about leaving Mike in a facility. This is not something that would be my first choice. Added to the stress of dealing with an ill spouse, comes the unfathomable realization that RESPITE DOES NOT EXIST.
My last ditch effort is a call that I already made. My good friend MaryAnn (Pres. of Alz. Association) directed me to her last option - a woman who runs another hospice. She confirmed that Mike is in fact entitled to 5 days of respite (DUH !!), and that while they cannot guarantee which facility he will be placed, they have enough facilities that they should be able to accommodate us. If they have a facility with our dates available, we may have to switch hospices.
Bottom line is that it appears the hospice we are enrolled only has one facility they use for respite. I wish they would have told us this sooner.

Here's hoping and praying that this last option works.