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?