I just have to laugh.
Since our friends held the fundraiser for us this is what has happened:
- I had to repay the bulk of what I owed to Mike's Home Health Agency
- The pipe under our kitchen sink broke and had to be replaced
- The kid's car needed a muffler system/etc
- Our dishwasher broke
- My car had a flat tire and required 2 new tires
- Brandon was injured and has needed continous dental work
- Our refrigerator broke (on Monday)
- A pipe burst in our basement (last night causing the basement to flood and will require us
to completely empty out all it's contents and drain water)
God always makes sure we have JUST ENOUGH to take care of what we need, but he doesn't want me to be comfortable enough to have a cushion.
I don't want to say things can't get worse because I KNOW they can, but seriosuly can I get a small break???
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
Wednesday, October 5, 2011
Monday, October 3, 2011
Missing Time Away
I find myself growing very tired more often. Years ago, I remember reading the blog of a woman who's both husband and daughter were diagnosed with Young Onset Alzheimer's. She cared for her husband at home for 12 years and I remember thinking, "that poor woman she must be so tired". Well next April, Mike will be sick for 11 years and I already know what she must have felt like.
It doesn't take much to upset our routine. Brandon's injury to his tooth at school has already been difficult to deal with. Financially - we're already up to $900.00 for the dentist and that does NOT include the travel expenses of Brandon going back and forth to Connecticut. Then there's the time involved - whether he takes the train home (which could take him 6 hours depending on the schedules and whether he catches the right train) or I take him back and forth (a round trip takes about 5 hours), we are EXHAUSTED. It takes so much time out of my already depleted schedule and it takes time away from his coursework and/or classes. Finally, for Brandon there is also the physical pain of dealing with a tooth broken in half under his gum line - trying to eat without using his front teeth, trying to clean his teeth in order to prevent infection and the daily annoyance of it all. This has been difficult to deal with, but it MUST be done in order to try to save Brandon's tooth.
The there's the fact that caring for Mike has become even more tedious. I don't want that to sound bad, but the truth is the truth. It now takes about an hour (on a good morning) to clean him and dress his wounds. There are the dreaded mornings when after he's been cleaned and the wounds all dressed, that he goes to the bathroom and we have to start all over again. We all do it because we love Mike and want him to be at home, but the fact of the matter remains is that is more and more time consuming.
Then I have the constant struggle within me as to whether we are doing this for ourselves and if in fact Mike is also getting tired. Does he struggle each day for US? Is he dealing with the pain of 4 bedsores because he doesn't want to disappoint us?
The fact that neither myself and my children have had a REAL vacation together in 5 years may add to the tension and struggle. Courtney and Brandon have both been lucky enough to have taken short trips with their school and of course Courtney went to London (for school) for 5 weeks. They need that break to get away from it all. For me, I haven't been so lucky. I've taken extended weekends for graduations, move-ins etc., but not REAL VACATIONS!!! A normal healthy family needs some respite time away, to clear the mind and rejuvenate themselves. A family dealing with a health crisis definitely deserves a vacation even more, but quite often, it's just not possible. I dream about the day when I can lay on the beach, swing in a hammock, read a book, have a drink and DO NOTHING. The guilt that those dreams bring is immeasurable because I know the only time I will be able to experience a true vacation will be when Mike has left us. I think there should be some sort of respite project in place for 24/7 caregivers (of any ill adult or child) so they can get away to recharge their batteries. We did that a few times before Mike's illness progressed and I had my salary cut. I can tell you first hand how much a vacation helps the body, mind and soul. Even though we had missed Mike terribly, when we came back we were all better caregivers. I came home to the normal routine, but I had a much needed break and that made such a difference. Then I sit and wonder - even if I could afford a real vacation, would I have peace of mind while I was away? Probably not, I would just be worrying about Mike. Ideally it would be great to go away and be able to leave your loved one in the hands of capable, professional nurses and aides 24/7 so that peace of mind can be attained. Unfortunately, there is no program around that would provide this sort of respite and that's sad. Keeping Mike at home is my choice and I wouldn't change it for the world, but it would be so nice to escape every now and then.
It doesn't take much to upset our routine. Brandon's injury to his tooth at school has already been difficult to deal with. Financially - we're already up to $900.00 for the dentist and that does NOT include the travel expenses of Brandon going back and forth to Connecticut. Then there's the time involved - whether he takes the train home (which could take him 6 hours depending on the schedules and whether he catches the right train) or I take him back and forth (a round trip takes about 5 hours), we are EXHAUSTED. It takes so much time out of my already depleted schedule and it takes time away from his coursework and/or classes. Finally, for Brandon there is also the physical pain of dealing with a tooth broken in half under his gum line - trying to eat without using his front teeth, trying to clean his teeth in order to prevent infection and the daily annoyance of it all. This has been difficult to deal with, but it MUST be done in order to try to save Brandon's tooth.
The there's the fact that caring for Mike has become even more tedious. I don't want that to sound bad, but the truth is the truth. It now takes about an hour (on a good morning) to clean him and dress his wounds. There are the dreaded mornings when after he's been cleaned and the wounds all dressed, that he goes to the bathroom and we have to start all over again. We all do it because we love Mike and want him to be at home, but the fact of the matter remains is that is more and more time consuming.
Then I have the constant struggle within me as to whether we are doing this for ourselves and if in fact Mike is also getting tired. Does he struggle each day for US? Is he dealing with the pain of 4 bedsores because he doesn't want to disappoint us?
The fact that neither myself and my children have had a REAL vacation together in 5 years may add to the tension and struggle. Courtney and Brandon have both been lucky enough to have taken short trips with their school and of course Courtney went to London (for school) for 5 weeks. They need that break to get away from it all. For me, I haven't been so lucky. I've taken extended weekends for graduations, move-ins etc., but not REAL VACATIONS!!! A normal healthy family needs some respite time away, to clear the mind and rejuvenate themselves. A family dealing with a health crisis definitely deserves a vacation even more, but quite often, it's just not possible. I dream about the day when I can lay on the beach, swing in a hammock, read a book, have a drink and DO NOTHING. The guilt that those dreams bring is immeasurable because I know the only time I will be able to experience a true vacation will be when Mike has left us. I think there should be some sort of respite project in place for 24/7 caregivers (of any ill adult or child) so they can get away to recharge their batteries. We did that a few times before Mike's illness progressed and I had my salary cut. I can tell you first hand how much a vacation helps the body, mind and soul. Even though we had missed Mike terribly, when we came back we were all better caregivers. I came home to the normal routine, but I had a much needed break and that made such a difference. Then I sit and wonder - even if I could afford a real vacation, would I have peace of mind while I was away? Probably not, I would just be worrying about Mike. Ideally it would be great to go away and be able to leave your loved one in the hands of capable, professional nurses and aides 24/7 so that peace of mind can be attained. Unfortunately, there is no program around that would provide this sort of respite and that's sad. Keeping Mike at home is my choice and I wouldn't change it for the world, but it would be so nice to escape every now and then.
Tuesday, September 20, 2011
Drowning
Too much going on at once.
Brandon's tooth is worse than they originally thought. It's cracked in half under his gum line, so now begins the careful routine of keeping the area clean. If anything gets lodged in between the crack, infection can set in..root canal needed...then despite of it all, he may lose the tooth. Add that to Brandon's already burdened shoulders and he's beginning to break down. Mike, heavy school load, trying to find his way around college (not literally) and now an injury, and he's understandably so, overwhelmed. He's questioning his ability to continue with his major.
Mike's sores on his sides seem like they're improving, but the one on his bottom looks like it's getting worse..fast. It breaks my heart to hear him moan sometimes as we clean it.
Brandon was in a minor car accident in January and we were recently served with court papers indicating that we are being sued by the occupant in the other car (the one that sped up so he couldn't merge therefor resulting in the accident). The night of the accident there was no ambulance and there was no indication in the police report of any injuries so this came as a HUGE shock. This is also on Brandon's mind, since he was the one driving at the time.
Mike's regular aide is out yesterday, today and tomorrow, so it's more running back and forth for me during the day to help the substitute get Mike in and out of bed, all the while worrying how Mike is responding to a different person at home with him.
In the last 4 days, I have had an average of 3-4 hours a sleep each night. It's all beginning to wear on me and I'm having a difficult time seeing the light at the end of the tunnel.
Brandon's tooth is worse than they originally thought. It's cracked in half under his gum line, so now begins the careful routine of keeping the area clean. If anything gets lodged in between the crack, infection can set in..root canal needed...then despite of it all, he may lose the tooth. Add that to Brandon's already burdened shoulders and he's beginning to break down. Mike, heavy school load, trying to find his way around college (not literally) and now an injury, and he's understandably so, overwhelmed. He's questioning his ability to continue with his major.
Mike's sores on his sides seem like they're improving, but the one on his bottom looks like it's getting worse..fast. It breaks my heart to hear him moan sometimes as we clean it.
Brandon was in a minor car accident in January and we were recently served with court papers indicating that we are being sued by the occupant in the other car (the one that sped up so he couldn't merge therefor resulting in the accident). The night of the accident there was no ambulance and there was no indication in the police report of any injuries so this came as a HUGE shock. This is also on Brandon's mind, since he was the one driving at the time.
Mike's regular aide is out yesterday, today and tomorrow, so it's more running back and forth for me during the day to help the substitute get Mike in and out of bed, all the while worrying how Mike is responding to a different person at home with him.
In the last 4 days, I have had an average of 3-4 hours a sleep each night. It's all beginning to wear on me and I'm having a difficult time seeing the light at the end of the tunnel.
Sunday, September 18, 2011
Late Night Call
Mike is still holding his own. One of his sores on his shoulder FINALLY seems to have healed, although the one on his bottom looks like it got worse. There are even moments when it sounds as though Mike is moaning. I hate that. He's been OK with Tylenol for now.
We had a surprise visit from Tom and Noelle. Tom comes by all the time, but it was such a treat to see Noelle also. They were out enjoying a day just the two of them and they stopped by on their travels just to say "HI". That's exactly what friendship is about.
Brandon called about an hour ago to tell me he was heading to the Health Center at school. Seems as though his friend was quite animated in telling a story and Brandon's face happened to be in the way. Brandon was at first concerned about his nose, then realized that his front left tooth was pushed back at a 45 degree angle. YIKES!!! The nurse at the school couldn't do anything, so they sent him to the ER where they have emergency dental staff on call. Hopefully they will just put it back in place and it will heal.
Never a dull moment, but thankful it wasn't worse!
We had a surprise visit from Tom and Noelle. Tom comes by all the time, but it was such a treat to see Noelle also. They were out enjoying a day just the two of them and they stopped by on their travels just to say "HI". That's exactly what friendship is about.
Brandon called about an hour ago to tell me he was heading to the Health Center at school. Seems as though his friend was quite animated in telling a story and Brandon's face happened to be in the way. Brandon was at first concerned about his nose, then realized that his front left tooth was pushed back at a 45 degree angle. YIKES!!! The nurse at the school couldn't do anything, so they sent him to the ER where they have emergency dental staff on call. Hopefully they will just put it back in place and it will heal.
Never a dull moment, but thankful it wasn't worse!
Wednesday, September 14, 2011
Sorry...
Thank you Kathy for asking, it's been so tiring I forgot to write on the blog (I posted on FaceBook).
Mike came home last Friday. The entire weekend was crazy with doctors, nurses, social workers and priests coming over - all routine for admitting a patient to Hospice. I forgot they had to treat this as a new admit and we had to do everything all over again. Then the Walk was Saturday, which made it even more crazy.
Since Mike has been home he's been up quite a few nights with a cough. It's a productive cough, and he tries so hard to get stuff out, but he can never quite get it up. I mentioned it to his nurse and she told me to just continue using the nebulizer and oxygen. She did confirm a slight congestion in his upper airways, but didn't prescribe anything right now. The two of us have had quite a few nights with little sleep, which lead Mike to have an "S" yesterday morning. He's been getting those a little more frequently than in the past - which I HATE!!! I would say it's been happening at least twice a month for about 6 months now. They aren't big, but "S's" nonetheless. Infection and lack of sleep can usually bring those on, we'll wait and see. If nothing changes, the doctor may have to increase the dose of the medicine Mike takes for them.
Brandon is back at school, and from what I hear from him, he's loving it! Courtney started classes also and is thrilled she will begin working with the cameras and filming actual short movies this year. Finally....she gets to do the hands on filming she's wanted for years. She also started her screenwriting class, so if anyone has any good ideas, send them our way :)!
Thank you again to everyone for your prayers. They keep us strong.
Mike came home last Friday. The entire weekend was crazy with doctors, nurses, social workers and priests coming over - all routine for admitting a patient to Hospice. I forgot they had to treat this as a new admit and we had to do everything all over again. Then the Walk was Saturday, which made it even more crazy.
Since Mike has been home he's been up quite a few nights with a cough. It's a productive cough, and he tries so hard to get stuff out, but he can never quite get it up. I mentioned it to his nurse and she told me to just continue using the nebulizer and oxygen. She did confirm a slight congestion in his upper airways, but didn't prescribe anything right now. The two of us have had quite a few nights with little sleep, which lead Mike to have an "S" yesterday morning. He's been getting those a little more frequently than in the past - which I HATE!!! I would say it's been happening at least twice a month for about 6 months now. They aren't big, but "S's" nonetheless. Infection and lack of sleep can usually bring those on, we'll wait and see. If nothing changes, the doctor may have to increase the dose of the medicine Mike takes for them.
Brandon is back at school, and from what I hear from him, he's loving it! Courtney started classes also and is thrilled she will begin working with the cameras and filming actual short movies this year. Finally....she gets to do the hands on filming she's wanted for years. She also started her screenwriting class, so if anyone has any good ideas, send them our way :)!
Thank you again to everyone for your prayers. They keep us strong.
Saturday, September 10, 2011
Walk to End Alzheimer's
Today was our Long Island Chapter's Walk to End Alzheimer's.Courtney walked with her friends.
Brandon walked with his friends.
I walked alone.
My friends who have walked in the past could not make it today, and for the first time in MANY years, I walked by myself. I wasn't really sad, because I knew I had many people with me in spirit. I may not have had a friend physically walking next to me, but I had their love and support with me. I also realized that this walk symbolized my future, the kids going their own way, me on my own.
This year the Alzheimer's Association had a new feature for the Walk. Upon entering the walk site, each walker was given a flower pinwheel. Purple symbolized those who LOST someone to the disease, yellow, for those CARING for someone with the disease and blue for those SUFFERING from Alzheimer's Disease. We could write our thoughts, memories or prayers on them and as we began our walk, we handed them to volunteers who in turn "planted" them so when the walkers came back, the garden would be in full bloom
The picture is of the Promise Garden at our walk. It was beautiful!
Thursday, September 8, 2011
Red Tape
Ideally, I would like Mike to stay in the hospital for 24 hours after he eats to make sure there is no more throwing up or bloody stools. He started eating his meals today, which would mean I would want to bring him home tomorrow......BUT Hospice just informed me that they have a new policy. The hospice doctor has to examine Mike within 48 hours for him to be placed back on hospice, and if Mike doesn't come home tomorrow MORNING, the doctor will not be available again until Monday. If the doctor doesn't examine him and approve the admission back onto hospice, Mike will NOT have his aide on Sunday!
So I have two choices: have Mike discharged tomorrow sometime (morning cannot be guaranteed). If he doesn't come home before 1:00, then we won't have help on Sunday....OR, have him stay in the hospital over the weekend and have him discharged on Monday.
Why can't ANYTHING be easy??? I want him home, and could have him home tomorrow, but the discharge process at the hospital is usually a nightmare. In the past, have gone up there at 9 a.m. and only gotten home with Mike at 4-5:00.
This disease CONSTANTLY leaves me at the mercy of others. I have no control and I HATE IT!!!
So I have two choices: have Mike discharged tomorrow sometime (morning cannot be guaranteed). If he doesn't come home before 1:00, then we won't have help on Sunday....OR, have him stay in the hospital over the weekend and have him discharged on Monday.
Why can't ANYTHING be easy??? I want him home, and could have him home tomorrow, but the discharge process at the hospital is usually a nightmare. In the past, have gone up there at 9 a.m. and only gotten home with Mike at 4-5:00.
This disease CONSTANTLY leaves me at the mercy of others. I have no control and I HATE IT!!!
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