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.

Warning re: Hospice

Be forewarned. If you are ever thinking of placing a loved one on hospice, bear in mind that you will not be able to utilize the respite service they claim you are entitled to.

Yes, that's right. For 2 weeks straight I have been working religiously on this issue with the Chairperson of the Alzheimer's Association (Long Island Chapter) and have gotten no where. I had originally looked into the idea of respite at the beginning of the year, but it took a backseat as we prepared for our short trip to DC. Since we've been back, I have been working on it and there is STILL no answer (our trip is 3 1/2 weeks away). Now my concern is that because hospice delayed their response, there are no other beds available in other facilities that Mike may have been able to go to under his Medicaid coverage. In order to do that, we would have had to drop him from hospice for that short period.

It is totally unimaginable to me that the system is this inept. Like I said, bottom line is if you place a loved one on hospice, you will NEVER be able to take a day or two to yourself.

Harry Chapin

Saturday night, Courtney came with me to see The Chapin Family - Celebration in Song. The kids had gotten me tickets for my birthday and I was excited about getting a night out. Courtney came with me, even though I knew she didn't want to. I'm not sure Mike would have even gone with me had he been well. We didn't really share the same taste in music. His favorite was Led Zeppelin, mine was John Denver. My taste in music was vast and throughout my youth I had seen: Chicago, Queen, Crosby, Stills & Nash, Charlie Daniels Band, The Kinks, Billy Joel, Elton John, Kenny Rogers, Genesis, Foreigner..and many more. One of the more "laid back" concerts I had frequently attended was Harry Chapin. As a fellow Long Islander, he often played at Huntington High School, with all profits going to PAF Playhouse. After sitting up front on the floor in front of the stage, at intermission we would go out into the lobby and meet Chapin and his guests. They would sign posters and take pictures. Last night, his family performed and it was the same laid back feeling.
Harry's daughter sang with her group, his two brothers sang with their children and Harry's two original bandmates were even there. His daughter Jaime, sang the song I loved as a teenager - Tangled Up Puppet. In fact, I danced with my dad to that at our wedding. After Mike and I had Courtney, I would often sing that song and think of her relationship with Mike. I was doubly emotional as I sat and listened to her sing. Harry's brother Tom sounds just like him and it was eerie listening to him. Harry Chapin died way too soon at such a yong age (39). He was an amazing entertainer and an unbelievable advocate. He founded Long Island Cares and World Hunger Year - both are organizations that supply food to the hungry. He was a crusader before it became popular. When he was killed in a car accident, I had read that his family had little money. Apparently, most of the money he made went to charities. He was talented and compassionate.
As I sat there Saturday night watching his daughter and nieces and nephew perform, I felt VERY old. Granted I was only about 15/16 when I began going to his concerts regularly, but the fact that now I was listening to HIS children and nieces/nephews sing his songs, made me stop and pause. Courtney was sitting next to me listening to the new generation of Chapins, at about the same age that I was a fan. Harry Chapin would freqently end his concerts with an appropriate song titled, "Circle". The Chapin family, fittingly, ended the concert on Saturday night to a standing crowd, all singing along. With Courtney beside me, I really did see that life is a circle....

All my life's a circle, sunrise and sundown, the moon rolls through the nightime till the day break comes around. All my life's a circle and I can't tell you why, the seasons spinning 'round again, the years keep rollin by.
It seems like I've been here before, but I can't tell you when. I've got this funny feeling that we'll all be together again. There's no straight lines make up my life and all the roads have bends. There's no clear cut beginning and so far no dead ends.
All my life's a circle.....

In response....

I received a comment on my last post and in response to that.....
Like I have said, I have been TRULY blessed throughout the years and I will NEVER deny that. I even mention that quite frequently. The kindness of so many people have lifted us up when we needed it the most. What I don't like is when people, who get caught up in the emotional moment, offer things they cannot provide. Even these people mean well and I don't hold it against them, I just want to make them aware that their words are remembered. Some offers have not been followed through on, and that's my point. Empty promises hurt those holding out for any hope....and this advice was not just meant for my family, but as advise to anyone who gets caught up in a moment trying to help others.

Please Don't

In the nine years of Mike's illness, we have seen such goodness in people. We have been blessed beyond measure. When people see our story or hear me talk, they get very emotional and tend to say anything that they think of. We have been told: Lifetime wants to make our story into a movie, Extreme Make-Over wants to do our house, a writer wants to write a book about our story, people want to set up Trusts and Foundations on behalf of the kids, they would help us with college, they will give us computers, get the kids tickets to ball games etc etc etc.

Please don't do this. As a family in crisis, we tend to hold out to ANY hope of promises that will make our life easier and/or lift our burdens. It is our faith in God, and our hope that one day things will get better that carry us through each day. While I TRULY understand the place of kindness where these thoughts come from, I ask that you please don't say anything that you know you will not be able to follow through on. Your fleeting desire to help does nothing but disappoint when it doesn't materialize. All I ever ask is that you pray for us, don't feel you need to work miracles - only one being is capable of that.
God Bless-

Catching Up

The past week has been busy so I thought I would catch-up. The above pictures were taken at the Education Conference back on March 11th.

This past Thursday I had a nice dinner out with a new friend - Donna. We met in Washington during the Alzheimer's Summit. She lives locally, but her parents live in Florida. Her dad has Alzheimer's and they just recently placed him in a nursing home. Her sister and brother do not bother with them at all, which seems to be a common theme for this disease. We talked instead of eating, so therefor, I came home hoarse and with a doggy bag. She has much of the same passion as I do in bringing this disease to light and I can see her being a worthy partner in this cause.

Friday, Brandon spent to day at his friend's house helping him fix his boat. Apparently, if Brandon and his other friends help him fix it up and they learn how to work it, they will be able to go out on it. I'm not so quick to let Brandon go out on a boat without any experience with 3-4 of his 16/17 year old friends. When I picked him up at 10:30 pm, he and his friends were burning their undershirts - Courtney made me laugh when she said that all her and her friends do is watch movies when they get together.

Friday night, Courtney and I went to the "Rock Stations of the Cross", for the third year in a row, something I hope to make a tradition. Each and every year I am brought to tears. Our church acts out all the stations and (which I admit I was not familiar with) and "humanizes" Jesus. When he falls for the first time, you see him fall and drop the heavy cross - the church is silent. It's extremely emotional.

Saturday, Courtney and I went to NYC to see Promises, Promises starring Sean Hayes and Kristin Chenowith. Courtney gets GREAT discounts with her school ID and she has been taking full advantage. The show was funny and I never realized all the famous songs that came from it. The weather was beautiful, which was a plus as we walked around New York.

Easter Sunday we were blessed to have an aide with us until 3:30. It allowed me time to help straighten up and eat dinner before Mike got up from his nap. The weather was beautiful again, and I actually got to sit outside for 1/2 hour by myself. Ah.........

Today I am still fighting to get respite for Mike. I am VERY close to just giving up, but I really don't want to. I WANT to go away and fight for what we are entitled to. I was recommeneded to one facility that works with the Alzheimer's Association and they told me that they MUST pre-arrange when a patient stays for respite. Courtney is also having issues re-arranging her finals that week, so I'm getting discouraged. I know my sister and her family read my blog, so to them I will say, "I'm still coming, it's just that at THIS MOMENT, I am very frustrated and not sure HOW I will get there."

As a caregiver I am CONSTANTLY being told that I "need to get away", "need to relax" in order to be a better caregiver. When we see doctors and social workers, they are always asking me what I am doing for myself. How then, when I want to do something for myself, I can't???? Please, does anyone else underdstand the idiocy here?

Holy Week

Mike's aide was out sick the last two days, but we were blessed to have a wonderful substitute aide. That happened only because her regular patient was off this week and she wasn't needed, otherwise we would not have been so lucky. We also had a new aide on Sunday, who seemed to be nice, but it was her first day, so it will be a wait and see. I hope it works out so I will be able to have the help I desperately need on Sundays.
The weather is FINALLY starting to get nice, which is also desperately needed.
Brandon got his grades for this trimester and I am proud to say he did very well. He was very concerned because he was struggling the last few weeks. Those two days in DC were detrimental in school and apparently, he missed a lot of new work. He rebounded for his tests and we both breathed a sigh of relief. Courtney is still on break. Tomorrow night we hope to attend the "Rock Stations of the Cross" - which has become a yearly ritual. Saturday, Courtney will be doing a reading at Easter Vigil and on Easter, she will be going to Sunrise Mass with her friend (which means she we only get about 4 hours sleep). I went last year, but I don't think I will be able to swing it this year - which is sad, because it's always SO beautiful.
This was always Mike's favorite holiday and spring was his favorite time of year. A time for new beginnings.....