Tuesday, September 29, 2009

No One to Call

When you have a bad day - who do you call? Your husband/wife.
I'm having a REALLY bad day. Eight years is a L-O-N-G time to feel that way.
I was on my way to lunch today and needed to share what a God awful morning I had. I had no one to call.
Welcome to the life of a caregiver for a spouse with Early Onset Alzheimer's Disease.

Thursday, September 24, 2009

Stranger in a Foreign Land

Being a caregiver is a life like no other. What I do for Mike in the morning before work, and at night after I get home, is often time consuming and sometimes challenging. My language and rituals are often not understood by "outsiders". When I am out in the "regular" world, I find myself quite often not being able to "understand" the language spoken, and the life lived by "mere mortals". The things they speak of and complain about, are not even on the radar in my universe. Life as a caregiver is lonely - it feels like you live on a desserted island and the only other person you can share things with, is someone who can no longer communicate. The two worlds attempt to collide sometimes, but there is always resistance.
I think I now know what it's like to be a stranger in a foreign land, living amongst people who speak a different language trying SO HARD to understand their culture.

Wednesday, September 23, 2009


On Monday I switched Hospice Agencies. It's so strange how they all work under the same Medicare guidelines, but have different rules. One said they can't give us some supplies, another said "no problem". One covered all Mike's medications, the other doesn't. We'll wait and see how this goes. I had to call them today already. As Mike was getting into bed last night, his toenail was almost ripped off. I felt bad because Brandon and my brother were there alone, so I could attend my monthly Early Onset support dinner. Apparantly the nail got caught on something and it started bleeding bad. I just don't want any infections to set in.
Mike had a little cough the other day and a low grade fever. This has happened a few times over the last couple of months and I begin to wonder if his swallowing is becoming more difficult.
I have also had to face another reality recently. I have met numerous families over the years, with LO's with EOAD. Many of them were diagnosed right around the time Mike was, if not later. A number of these people have recently passed away. I am comforted in knowing that Mike is still here with us, but at the same time, I am ocassionally jolted into the reality of this disease and I know at some point, Mike too will pass. I am thankful everyday that I can TRULY say in my heart that I have done everything I possibly can for him. I know he his comfortable and he KNOWS how much he is loved. I will have no regrets.

Friday, September 18, 2009


This week has been one thing after another, and I'm relieved to say that none of it had to do with Mike.
Last Friday was Sept. 11th. The day started with my brother noticing a leak in the front hallway ceiling. We quickly realized that it was coming from the upstairs bathroom. I knew that I was going to have to call a plumber. When they came later that day, I was told that it was NOT a simple fix and I had to have a portion of the piping replaced. Apparantly when it was originally done, it was installed incorrectly. Big job, big money.
The fact that it was Sept. 11th, made the day even more emotional. Like everyone else, I remember that day very vividly. What affected me more this year was remembering that Mike was still pretty much "OK" at that time. He had just been diagnosed that April, and I remember how upset and confused he was about the whole day. He called me at work when the second plane hit, when the 1st building collapsed, when the 2nd collapsed, when the airplane went down, when the Pentagon was hit. He must have called me a dozen times that morning. My boss finally let me go home. Remembering that Mike was still able to call me and talk, made me miss him and his soothing voice that much more. I REALLY miss the sound of his voice.
Saturday, 9/12, we attended our Memory Walk and I am very honored to report that henley's heroes, raised $5,100.00 thanks in part to some VERY generous friends and family. It was overcast the entire day, but the rain held out and the day was a success. The walk has grown SO MUCH over the last few years, that the Alzheimer's Association may have to change venues for next year. I remembered the Memory Walk that Mike and I did the year he was diagnosed. There must have only been about 100 people there, if that many. It made me feel good to see how it has grown. This year they registered approx. 800 walkers.
After the walk I brought Courtney back to her dorm and she was very unhappy. We had a rational, heart to heart talk, and she expressed how much she dislikes Hofstra, so we will soon start to see what would be involved in transferring her to Fordham.
Speaking of Hofstra, the week began with disturbing news of assaults and a gang rape. After 2 days of investigating, the announcement was made that the gang rape never happened, but the armed robbery was true. The fact that Courtney walks all over the campus at night by herself, concerns me. The campus has been swarming with media the entire week, especially after the accused recanted her story. I WILL be looking into how to purchase mace.
I started the process of switching hospices. Strangely enough, when our current hospice found out that I was switching, the VP of the company called me and asked why. Seriously, are they kidding? They wanted the discharge Mike after he had a high fever for 4 days, how could they be serious? This woman claimed that she didn't know about it, but I alerted her to a number of situations that happened over the course of the year. Hopefully the switch will go through with very few problems.
My week at work was crazy, and I had no time to take care of anything during the day. I am exhausted.
Courtney was approved for the Federal Work Study program as part of her fincial aid package and was told to go the the student employment office on Thursday. When she went, she was told that all jobs had been filled, and they were nasty about it to say the least. She called me in tears, because she knows how important it is that she works while she's in school. She doesn't have a car, so she can't get a job off campus either. I have a message into the student advocate, and I'm hoping that they can correct the situation.
Brandon had a follow-up with the doctor for his ankle and it went no where. Brandon is VERY nervous about doing sports again, because he is so afraid he is going to injure his ankle again. This "specialist" has no bedside manner and basically blew off Brandon's fears and concerns. His ankle still doesn't feel right (his MRI DID show torn ligaments and OCD), we may have to seek out a second opinion.
I get a letter from Department of Social Services stating that Mike's "overage" (the amount that I have to pay for him) each month went from $360.00 to $1,120.00. That's nearly triple. I can't afford the $360.00 a month, how the heck do they think I can afford $1,120.00????
I needed to get some last minute information to the reporter for the story in Newsday. I am almost afraid to say that it looks as though the story will run on Oct. 11th. We all know the way the news works, and if something more important comes up, the story will not run. Actually that's the day that the series begins and I am beign told that the preliminary story etc. is great.
I truly hope that this story open others minds to the fact that Alzheimer's is not just an old persons disease. It affects the younger people also, and as young families, there's so much more at stake. Ths situation is unique and even more devastating. I hope the politicians read it and it stays in their memory the enxt time they need to vote for funding.
Well, I guess you can say that alot has happened, hence the reason why I hadn't written in over a week. I hope I have been able to get everyone caught up on my crazy life.

Thursday, September 10, 2009

Medicare and Hospice

Mike has been on hospice since September. If you've been following my blog, you will remember that right before his last hospitalization, hospice was going to "discharge" him because they felt he was too "stable". I've found that it's the most dreaded word in hospice care. I have looked into another hospice agency and will be working to have him switched, but when speaking to their rep., they said they may have done the same thing, because of Medicare guidelines. While Mike is bedridden, incontinent, does not speak, needs all his foods pureed, and assistance eating those foods - Medicare will NOT cover him if they feel he is doing TOO WELL. Is it me, or does anyone else see anything wrong with that statement???? Do they consider Mike's health "too good" for the extra services needed to provide care for his delicate health? The new hospice rep. mentioned that Medicare does allow leniency for certain cancer patients. That's good to know, because ANYONE in such poor health that hospice would be needed, deserves the care they get. My question is, why don't Alzheimer patients get the same consideration? This disease is a roller coaster ride to say the LEAST. Mike was given Last Rites 2 years ago, yet he is still here with us. One day he can do really well, another not so good. More than any other disease, Alzheimer's Disease is THE MOST unpredictable. Medicare guidelines need to change in order to accommodate the ups and down and unknowns that Alzheimer patients experience. If exceptions can be made for one illness, why not for another?

Monday, September 7, 2009

Labor Day

Today was truly a labor day for me. Mike's aide was out yesterday and today. Yesterday she asked for the day off, which I never have a problem doing. She works 7 days a week and is wonderful with Mike. The ONLY issue I have is that when she's not here, Mike doesn't do well with me. Mike did not do well yesterday and I was looking forward to Elaine coming in today. I knew that Mike would do better, but the phone rang this morning at 7am and I knew it wasn't good. She was very sick. Right away I panicked about Mike and how he would do, then I realized that "it is what it is". I can only do the best I can for Mike and hope he will be OK. Today he definitely did better than yesterday, although not as good as when Elaine is here.
I am exhausted. Inevitably, for years, whenever I had a day off, our aide would not come in and I would need to take care of Mike. It seems like I can NEVER get a day to myself. Today, my mom told me that she could see the bags under my eyes. That's what happens when you haven't had a full night's sleep in 8 years.

Thursday, September 3, 2009

His Eyes

I look into his eyes and I wonder what he sees. Does he understand? Does he know who I am? I know he knows my voice - he turns his head when he hears it? What is it like for him? Is he trapped in his body, trying to yell, frustrated that no one can hear him? In the beginning, he would point to his head and say to me, "Everything is up here, I just can't get it out here" (while he pointed to his mouth). When he smiles, is he feeling joy? I can spend hours just looking into his eyes, just waiting for the tiniest bit of recognition. I talk about the times of our youth and recount all the fun we had. I tell him all the time that I am SO GLAD we went to Hawaii. That was a bone of contention for family and friends. We had only been married a year when his father passed away. He left Mike some money and we used part of it for our dream vacation. While others thought it wasn't a smart decision because we had just purchased our home and were planning to start a family, we followed our heart and went to Hawaii. To this day, I am SO THANKFUL that we did. We were able to enjoy paradise together and I will always have those memories.
I look into your eyes everyday and wonder. Do you see me? Sometimes it looks as though you are trying to talk to me. Is that my imagination? They say that the eyes are the windows to the soul. Can you see MY soul? Do you understand just how much I love you? I have never said "why me" with reference to being a caregiver, but I HAVE questioned, "why you"? You are an unbelievable person who would do ANYTHING for ANYONE. You very rarely have anything bad to say about anyone. You brought faith back into my life and you lived that faith every day. You lost so much at such a young age, yet you never lost hope. Your faith guided you and now mine is guiding me. I could never have been able to do this without you. God brought us together because he knew we needed each other.
When I look into your eyes, I realize how thankful I am that you are my husband. I don't know what you see, or what you understand, but I hope you know how much I love you.