Anniversary/Respite

Yesterday Mike and I were married for 22 years. This year, more than past, I had a difficult time dealing with the day. The night before I was dreading the day and I walked around pretty much all of yesterday in a funk. Maybe it's because of how difficult things have been lately, but for whatever reason, this anniversary made me much sadder than previous years.
We still have no washing machine so I spent my anniversary in the laundromat (the repairman came last week, but needed to order a part. He will be coming back on Tuesday). This is not at all where I pictured we would be back on that beautiful day 22 years ago. The future I had hoped for is no longer possible.
Brandon has also been having a difficult time with everything lately and I worry about him. I believe the reality of being a senior in high school and that he will be going off to college next September has really hit him. I also believe it's been hurting him even more when he realizes just how much of his life his dad has missed. The other day he said to me, "mom it's been almost 10 years. I was 7 when dad got sick!" That single statement put so much in prospective for me. I remembered when I was 17 and my parents divorced - I felt like my world had collapsed around me. I shared that thought with Brandon and he said to me, "at least you had both your parents until you were 17".. wow.. I began to second guess myself and the decision to keep Mike at home. Both Courtney and Brandon CONSTANTLY tell me that they wouldn't have it any other way, but did they realize at 7 & 9 years of age what they would have to sacrifice? Should I have made an executive decision to override their wishes? Once again I think about the two other woman who were in the same situation as I was. They took a different route - they divorced their husbands, placed them in assisted living facilities and remarried. Their children have countless opportunities that mine will never have. Just the other day Courtney went to the "study abroad" fair at school. She would love to study film in England. Her one friend from high school will be studying abroad in Italy for the second time next semester. Courtney just wants to go once, yet when she heard the fee was $17,000.00 PLUS, she knew it was impossible. I asked her to check and see if her financial aide and student loans could be applied but she doesn't believe so, but will be check it out anyway. Meanwhile one of the children in the other family has been to Europe twice. Once as part of a Student Ambassador program, the other with her family.
Brandon said to me, "mom something good HAS to happen soon". My heart broke for him. They see our family doing all the "right" things, but sinking deeper and deeper every day while those who took a different route (whether right or wrong) and chose not to devote their life to caring for their spouse, being rewarded.
"Faith" - I tell Brandon, and I explain to him how much I have been struggling lately.

Then it hits me, it's been 5 years since the kids and I have been on a vacation - I mean a REAL vacation. We have taken "trips" to DC and Pennsylvania, but with all the running around we did, I would hardly call them a "vacation". RESPITE - something imperative that we do not get. Five years of 24/7 caregiving with no rest and I believe we have finally reached our breaking point. Sad part is, there's no way for us to change that situation. I feel better knowing that we haven't "given up" and it's the simple fact that we are all tired, spent, worn out from giving so much yet not being able to rejuvinate ourselves. It could also be a contributing factor in why we have been arguing alot more lately.
Courtney is 19 and Brandon is 17 - they are teenagers. Teenagers who never had their dad the way most children do. Children who have devoted their lives to caring for their dad, when it should have been their dad caring for them.

Caregiver Conference

Yesterday I was asked to be a part of a Caregiver Conference held at a local nursing home. It continues to amaze me how many caregivers are out there desperate to find guidance as they navigate their way through the Alzhiemer's Disease maze. As with the others I have participated in, this one had speakers and workshops - all designed to help those caring for a loved one with some kind of dementia. I don't think they ever had any when Mike was first diagnosed, at least I was not aware of any. It's a wonderful "gift" for these professionals to give back to people who have entered into a very scary, unpredictable world.
I was part of a panel that included 6 caregivers - 3 of whom who care for an older parent, 3 caring for a spouse with "young onset". All the stories were unique to the family, yet similar for the disease. I am always proud to sit among people who have gone above and beyond in caring for a loved one, whether it be at home or in a nursing home. Unless someone has walked in our shoes, they cannot possibly understand, so to sit with others who have gone through OR who are going through the same tragedy, makes me feel "safe" and comfortable. When I take part in these events, I feel like I am with extended family.
As I was walking to my car afterward, a woman drove by and stopped me. She was also a part of the panel, but we did not get to speak very much before or after the presentation. She slowed down and rolled down her window, put her hand on her heart and started to cry. She expressed her shock at Mike's age at diagnosis and wished me well. We spoke for a bit and she went on her way. Fellow caregivers can communicate with very few words - often none are needed. We know in our hearts.

Back on Track

After last week's scare with the kidney stone, I was able to get myself "back on track".
It seems as though the negativity and depressive tone of my mom and brother had been bringing me down. For years I was always the one that had the positive outlook, but lately (and as you all can attest to), I have been in a "bad place". Last week, I turned the corner back to where I am supposed to be. I prayed alot and just made my decision that no matter how bad things are, they can ALWAYS get worse. This is the mantra I would repeat to all who know me, but I lost sight of that. Obviously, it's easier to just feel beaten than it is to fight, but now that I am feeling better and for that brief glimpse saw what could have been, it gave me renewed energy to continue on my positive track.
In fact just this morning, I was already tested. My mom was doing her daily laundry at my house when all of a sudden we heard a "crack". I thought the washer door had broken. When I inspected the machine I saw that the rubber around the entire drum was basically "mutiliated". I could have gotten really upset and said, "here we go again", but instead I said, "Thank you God that I have an extended warranty". Even though the repair person can only get to us on Tuesday, I feel blessed to have the extnded warranty to pay for the repair.
I'm back to the place where I want to be - no health insurance and all......

I am feeling better than last week, although not 100%. I still feel discomfort, which concerns me. A VERY DEAR FRIEND of mine is having one of the Urologists she knows review my CT Scan to make sure everything seems to be OK. My problem is that I read my report thoroughly and it mentioned a number of other issues that I now have on my mind. While it's in the report in black and white, I am hoping that the issues are not as serious as I think they are, and they may be issues than many people have. I am trying to remain calm.
Mike's hospice social worker came by this morning. My mom had just mentioned to her about my visit to the ER last week and I apologized that I couldn't stay and talk because I was running late for work. Despite this, she says to me as I'm walking out, "Have you thought about funeral arrangements? I was not assigned this case in the beginning and it doesn't look as though anyone has ever spoken to you about this". Yep, this is what I was asked as I was walking out the door to work. Her question isn't what bothered me, so much as it was the timing or her lack of consideration. I just looked at her and said, "I've thought about alot, but I have too much on my mind right now and I'm getting too upset before work". I drove to work in disbelief, not sure where to even begin.
Murphy's Law has been in full force the past few weeks. I need to constantly remind myself to dwell on the positives and blessings, rather than the negatives. Thank you all for your prayers.

Crazy Week

At the start of this week I had planned on reaching out to my blog readers and asking for your prayers. The power of prayer is an amazing thing and my faith is what keeps me going. I wanted to ask that you each take a minute or two and say a prayer for me and my family. During the last nine years of Mike's illness, I have never before been so overwhelmed: physically, emotionally or financially. I did not feel things could get worse and I was looki0ng for your help. It doesn't matter what religion you are, who you pray to or what you believe, I just needed to know that strong and powerful prayers were going out for me. As this week comes to an end, you will find out just how much I need them now.

On Tuesday, right after dinner, a pain, the likes of which I have NEVER experienced before, started in my back. I thought it was gas, so I took Tums. My brother was upstairs resting (he's had his own health issues) and Brandon was with me in the living room, but I had to leave to get Courtney from work (She commutes from Fordham in the Bronx out to Garden City 4x a week for her job at The Disney Store). Driving to get her was a complete blur - the pain was unbearable. I didn't know whether to cry or throw up. When I got to the mall I got out of the car and started pacing (which must have looked suspicious to Security), but I just couldn't sit for another minute. I was going to explain to Courtney that I couldn't wait with her at the train station, that I had to drop her off and run, but with one look at me she said, "mom I'm taking you to the hospital". Two things entered my mind, 1) what about Mike? The ER can take hours and if I'm stuck there for the night, who will prepare his food and meds in the am?; and 2) I have no Insurance. Yes, for the first time in my life, I have no health insurance. I was going to wait it out, but both Courtney and Brandon were convinced that I has appendicitis and was concerned it would rupture. The look on their faces made me cry even more. With all they had been through with Mike, to see their stronghold collapsing in front of them, crying out in pain, they were petrified. I went to the hospital for them. The two hours in the waiting room was the longest ever - I was pale, rocking back and forth and running into the bahroom to throw up. I wasn't saying a word and I felt bad for Courtney each time I went into the bathroom. I could see the look of relief on her face each time I came out - I could read her mind, "what will I do if she takes too long? Did something happen? What would I do?" I wished I could ease her mind, but at the time I couldn't even think straight. 2 1/2 hours later after a CT Scan and some of the worst pain I have EVER felt, it was confirmed that I had a kidney stone. I have a very high tolerance of pain - in fact I had Branfdon COMPLETELY natural, no drugs at all, but this pain was so bad, the morphine they gave me, only took the edge off.

We left the hospital at 1:30 in the morning. Courtney missed her one class on Wednesday. Brandon left school early. Brandon did an AMAZING job getting Mike into bed with my brother and I couldn't have been more thankful or proud of each of them. They really stepped up to the plate when I needed them the most.

On Wednesday the pain was still with me and I tried to figure out how I would know if it passed. I spent the next 2 days drinking 2-3 QUARTS of water and FINALLY last night I believe it passed. Then about 3 hours later the pain started again, and it felt like something else had passed. So far, no more pain. Of course, Mother Nature and/or God has a sense of humor because on Thursday I got my period. Seriously????

THANKFULLY Mike remained status quo throughout, I guess God thought, "enough is enough". Now that my pain is gone, I am left to worry about how I will be paying for the ER visit. The hospital gave me paperwork to fill out for "Charity Care", which I will no doubt send out when I get back to work.

Courtney and I still don't have health insurance and it weighs on my mind every minute. As I said, I have never not had insurance, my whole life. Social Security feels that I make too much money for coverage under Family Health Plus - and they actually sent me paperwork saying I can get coverage if I pay the $3,300/month premium. That would be added to the $1,200/month I'm supposed to pay for Mike's aide (which I haven't done in months). I wait every day for a call from the Agency telling me they have to pull Mike's aide because on non-payment. There's not much I can do because I just don't have the money.

And this is where I get frustrated and angry. I've worked since I was 16 and paid into social security. Now that I need assistance, hopefully only temporarily - I do not qualify for it.......Yet, there are other people out there that JUST came into the country and they qualify for everything. I hate feeling this way, but our government gives me no choice. I need their help, but they don't care.

THAT is why I asked for your prayers. Ironically, I planned my request even before my visit to the ER. The visit only made my request more urgent.

Please, if you read this blog, take a moment and say a quick prayer for me and my family. Pray for our strength and guidance as we travel this difficult road. The power of prayer is amazing!

Thank you and God Bless

Pictures - As Promised

Courtney and Brandon driving the ATV's at the event out in Quogue where Courtney was presented with a check for books for school.

Courtney, Brandon and I at this year's Memory Walk where "henley's heroes' raised $3,800.00.

Courtney, Brandon and I along with Denise and her husband Tom who ran the ATV event . They are good friends of one of my dear friends and during the summer they hold monthly events to give back to different people. They blessed us with a check for Courtney's books.

A picture of Courtney at Fordham University...her dream come true.

Poor Mikey

For the past week or so, we have been dealing with a pressure sore on Mike's right thigh. We were very vigilant as soon as we saw it, and at one point it got worse, before it got better. Of course, while trying to keep him off his right side, we had to rely more on his left side and back. It was only a matter of time before either one of those areas broke down. It is his back. He developed a sore at the very bottom of his back and we have aggressively started to "attack" it. It's a more difficult area simply by it's location, as it is prone to infection just from being soiled throughout the day. We are doing our best and pray our efforts are successful.
In the mean time, it appears that Mike developed the infection on his toe again, most likely the same infection that took us a good 6 months to completely get rid of the last time. The left big toe is red, swollen and open. The podiatrist will be coming by tomorrow to check it out and hopefully prescribe the same antibiotic ointment and possible antibiotic he took last time. Whenever an antibiotic is thrown into the picture I have to carefully weigh the pros and cons. Most antibiotics are very strong and hard on the system, so if Mike can become uncomfortable from stomach irritation or diarrhea, then it may not be worth administering it. I don't want a possible infection to spread - but if he can dehydrate by treating it, then what do I do?
We had a busy weekend. Courtney came home as usual, to work, but I barely saw her. On Saturday morning we met with the head of the Long Island Chapter of the Alzheimer's Association. She would very much like to start a "support group" of sorts for the children of people with Young Onset Alzheimer's and she asked Courtney and Brandon to be co-facilitators. (Brandon was supposed to go to this meeting also, but he had to put in service hours for the National Honor Society by helping out at his High School's Open House). Courtney is a bit concerned that teenagers won't want to attend, so we'll have to see where that goes. After we left that meeting we did our Taregt shopping and then Courtney went to work (Brandon came home then went to his friend's house). On Sunday my brother treated us all to breakfast, which was a treat for me since I didn't have to make our usual Sunday breakfast. Afterwards I went food shopping, while Courtney went to work. I came home and took advantage of the windy day and did Mike's and my sheets. There's nothing better than getting into bed at night with sheets fresh from the clothesline!! Courtney came home from work and I drove her back to school. I got in at 8, got Mike into bed and then finally......relaxed. Oh, I almost forgot, Brandon injured his arm and cannot straighten it. It seems like a pulled muscle, but we all know what great patients men make :)!