Respite.....

or I should say, the lack thereof.

The one year I REALLY wanted to make it to DC for the Alzheimer's Association Public Policy Forum may not happen after all. Since last Thursday I have been trying to arrange respite for Mike. While he is entitled to respite care under hospice, I cannot "pre-plan" his stay. I would only be able to place him if the day that we were leaving, there was a room available. This is so UNBELIEVABLE to me. This is the VERY REASON why we want to desperately to go to Washington. This is the craziness we want change!!! All I hear is how the kids and I need time "away" and the one time we want to utilize this service, I am being told, "you have to take your chances that a room will be available". How can I book the hotel and train, if at the very last minute (the day before) I find out that there is no where for Mike to go????? Am I the only one that thinks this is absolutely ridiculous????

I am working with the local Chapter of the Alzheimer's Association to see what can be done, but I am honestly concerned now. Are all these obstacles happening because we are not meant to go? Will something happen while we are away?

I am also concerned now about attending my nephew's college graduation in May. We were going to utilize respite then also. If there's no respite facility, then we can't go to that either. So much for me and the kids taking a break...................................

Seriously, I feel like throwing in the towel.

Struggles

I HAD ORIGINALLY WRITTEN THIS POST ON JAN. 22, BUT HAD TO EDIT IT, THEN I FORGOT ABOUT IT.

As if having someone you love have Alzheimer's Disease isn't bad enough, it is a CONSTANT STRUGGLE to keep them at home. In the last 24 hours, I was told that the respite hospice provided cannot be scheduled in advance (which means I cannot make arrangements ahead of time for Mike when we go to Washington) and Mike's aide was pulled from us (temporarily) for not passing her physical.
I inquired about respite care last week with hospice's social worker. She left a message for me yesterday indicating that unfortunately, beds cannot be reserved. If you want respite and a bed is available, then OK, if not, then you're out of luck. How in the world can I make reservations (train and hotel) if there's a chance that there will be no place for Mike to go??? Something is wrong with that and I will have to look into it further. The last time I put Mike in respite, I had to make arrangements months in advance. This just does not make sense.
This morning, Mike's aide went for her required physical. I got a call at work around 11:30 from the home health agency indicating that the aide failed her physical and had to be pulled from the job. Just like that, they requested she leave. They found an aide for the afternoon and tomorrow, but what the heck?! The aide's blood pressure was too high and they felt she was too unhealthy to work. She left our house and went straight to her doctor. She received her medical clearance and will be back at work on Monday. Unfortunately, Courtney will be moving back into her dorm tomorrow and I will have to leave Mike with an aide he's not familiar with.
If you want to keep your loved one at home, everything is difficult. I have to fight for just about everything and honestly, I am getting tired of it. Beside the emotional devastation this disease has brought us, it has also brought numerous challenges and hurdles. You need to be really strong if you want your loved one home with you and you need the tenacity to fight like hell.
Everything is a struggle on some level.

Not much is happening these days - Mike is pretty much status quo. There have been a few days/nights where his "gurgle" has come back and he had been unable to cough it out. That produced a few nights of little sleep, so therefore I am tired.....again.....always.
Courtney is finishing her break and will be heading back to school on Monday. I will realize once again how much she helps me and will miss her terribly. Because she is still so miserable with Hofstra, as the date looms near, her attitude and mood change drastically. How I wish I could do something to change that. Not to beat a dead horse, but having seen my children sacrifice so much and lose so much over the last 8 1/2 years, it breaks my heart, as a parent, that this disease has taken away Courtney's dream to attend a better school. Despite her difficult life at home, she kept up her grades and activities with the hope of attending the college of her dream. She flourished in spite of her circumstances, she excelled when others would have collapsed and now she cannot even go where she wants to go - WHY, because this disease has destroyed me so bad financially, that I do not even qualify as a co-signer. It hurts, and this feeling is re-visited every time she goes back to the school she hates. I apologize for bringing it up again.
Brandon is recovering well from his surgery. He's been going to physical therapy 2 times a week and is now down to one crutch (for support). He hopes to be "crutch-free" by next week. He's VERY anxious to resume his activities, but we are all telling him it will take time. The staff at P.T. love him and thankfully, he enjoys going.
The other day I went to get a hair cut and a wave of sadness washed over me when I saw a father there with his young son. Memories of Brandon's first haircut and how patient and calming Mike was while he held him. Watching this man and his son, I felt cheated. My heart was heavy thinking of all that Brandon and Mike have missed together. I have no doubt they would have been the "best buds" and I ache knowing that I will never see that interaction.

Advocacy Forum (DC)

This March I hope to attend the Alzheimer Association's Advocacy Forum in Washington DC. I have wanted to attend for years, but have never been able to make it happen because of either Mike's status or timing at work or money. Now that the time has come to start making reservations, I am still hoping I can do it this year. The kids and I would LOVE to go to Capital Hill and advocate for more research and money. Each Advocate leaves behind an information packet for their Congressman and we hope to include a special page about Mike and his struggle with the disease and the reality of keeping a loved one at home. I plan to include pictures that show the ravages of the disease so that the next time a bill comes before Congress, our representative may remember our image when they go to vote. I really feel like this could be one of the most important trips we make and that's why we are attempting to do this instead of going someplace "fun" for the weekend (We haven't had a "real" vacation in about 5 years). The planning involved in this will be extensive, as we would have to place Mike in respite for the days we are away. In doing this, I would need to go and visit the facility ahead of time to insure that it's satisfactory. I would have his aide stay with him during the day so I know someone familiar with him and his habits would be there with him. We would need to plan our departure around his stay for both coming and going. Financially, it will take alot: between the train, hotel, food, and paying his aide, but I really feel strongly about this. Whatever sacrifices I need to make, I will, so we can do our part in reaching out personally to those who actually make these decisions.

Recipe for a Good Day

There are many components that make a day good day for us and if any of these are missing, the day will get progressively worse.
First, we pray that Mike is healthy. If we wake up to a sick Mike, the rest of the day is spent on pins and needles.
Second, we need everyone else to be healthy. When someone is not functioning well, it throws our complete schedule out of whack.
Next, we need Mike's aide to be present. If for some reason she is sick or out on a personal day, this causes big problems. If it's during the week, I cannot go into work, if it's on the weekend, all my errands are delayed - if completed at all. As usual, we have found that the agency can never find a replacememt when she is out - beside the fact that Medicaid is still standing strong that no aide is allowed to feed Mike!
Next, we need for everyone to be rested enough so as not to get on each other's nerves. When even one person is cranky, look out!
Last, we need to make sure that our plans don't collide. If I need to be somewhere, or the kids need to be somewhere, and the times happen to conflict, disaster.

If all the above align, then our day is good. If one component is missing, our day is "alright". If two or more components are missing, that you can chalk that day up to a disaster.

Sunday was that day for us, but I'm glad to report that we are back on track. ..for now.

A Week of Losses

This past week has been emotionally draining. My friend at work lost her dad and a friend who's spouse also had EOAD passed away (ironically on Mike's birthday). I only got to know my friend Elena this past year. She is a member of the dinner group that gets together every month who all have young spouses with some form of dementia. I did not know her husband, but while at his wake, I was able to "meet" her husband through the beautiful display of pictures and video that was running throughout the night. As I looked at his pictures, I saw a handsome young husband and father - someone who had his entire future ahead of him. He may have been diagnosed when he was a little older than Mike, yet his was still far too young.
This disease destroys a person in SO MANY ways. Looking at a picture that Elena had of her husband a few days before he passed, I could not believe it was the same vibrant person staring back at me at the pictures on display. There are not many diseases that can destroy a person's body & mind in the way that Alzheimer's does. I will continue to fight for all those who can no longer speak for themselves.
Rest in Peace Jim.

Happy Birthday Mike!!!

Tuesday Jan. 5th was Mike's 45th Birthday. We always do the best we can to "celebrate" his big day, just as we would if he was well. His presents are always wrapped and we moved his hands so he can "open" them. We sing Happy Birthday and I "help" him blow out the candles. After all he IS STILL HERE. I always wondered why some people choose not to celebrate a loved one's birthday who happens to be sick. How do we know that Mike is not aware of life around him? I have always felt that he knows what's going on and I have instructed everyone to talk to him in that way. Is that what keeps him strong? I don't know, but we will continue to do what we do because it seems to be working. Although he continues to lose weight and his health remains very fragile, he is still with us, we love him and he continues to give us strength and inspire us each and every day. Happy Birthday Mike!!

Happy New Year

This past weekend my sister and her family came in to help us celebrate Christmas and New Year's. We had a great time, as you can tell by the "wild and crazy" pictures of us above. We were thrilled that we ALL made it to see the ball drop and at midnight, after raising our glasses in cheer, Courtney Brandon and I went in to give Mike a kiss and wish him a Happy and Healthy New Year. On Saturday, Courtney and my niece and nephew went into NYC in sub freezing weather. Hopefully they are all thawed out by now.

On a sad note, the New Year started out sad for a very dear friend of mine. Her dad went into anaphylactic shock on Monday night and because of the length of time without oxygen he suffered severe brain damage. He never woke up and his family unanimously decided to take him off the ventilator. My heart breaks for her beause I know all too well what it's like to lose your dad suddenly. It forces us to remenber just how precious life is. This Christmas was his last with his family, and no one knew it. Thank God every day for your blessings.