Is 2009 Over Yet?

I have not written anything in awhile. As of this writing, my mother is in a nursing home because her dementia became too much for me to handle. But the trigger, the actual trigger was the death of my son, David.

I write the words, but I still can't believe it. David, my beautiful boy is dead. It's not a joke, it's not a dream, and I am not in an alternate universe. David is dead of a lack of oxygen to the brain precipitated by a cardiac infarction. He transitioned over to the next life on September 27, 2009. He was cremated on October 2, 2009. He was 28 years old. These are the facts; they are hard and ugly, but still the facts. I am frozen inside and at the same time,I am bleeding as though a huge chunk of has been ripped out of me.

The world has lost a bright soul and I have lost my child. I can't breathe.

Respite care

Today was my mother's first day at adult day care. I dropped her off this morning and left. She was not too happy about my leaving her there. This place is not just for seniors; it's also for people who have had strokes or people who are developmentally delayed.

When I picked her up at four, she told me she wasn't going back. I asked why and she said she just sat all day. I told her that she had to go because I had to work and my daughter needed to look for work. Then she said she was hungry. I found out later that she didn't eat lunch. Not because it wasn't served, but because she ate a late breakfast and wasn't hungry at lunch time. She did eat her snack, though.

Over dinner, she told me all about how she connected with several ladies and she helped people. The director of the program called me and mentioned that he observed her interactions with the rest of the participants and thought she did well.

I did mention that the director called and mentioned she had a good day. She laughed apparently pleased by all this interest. Then she said she would go again but not everyday. Good thing I signed her up for Monday, Wednesday and Friday's!

My daughter had the opportunity to have a driving lesson and we went shopping and picked up some extra things for mom to wear.

I am praying that this works out as I return to work next week. oh-oh. She's sundowning again. I was hoping that we wouldn't a bad night tonite. *shoot*

Sometimes you have to watch what you say

From the moment I awakened I knew this was going to be a bad day. The previous evening, Mom, my daughter and I were in Mom's room talking. I brought her a cup of tea and said good nite. My daughter and I went to our separate rooms.

The following morning, my mother still had not come out. I knocked on the door only to discover that her door was locked. She implied that my daughter came through the door into her room and rearranged her stuff. There is no pass through between the 2 bedrooms.

Later that day, I gave my mother her Namenda which doubles in dosage this week. When she asked what was it for I stupidly said, "your memory". I could have just as easily said something abou one of her prescription doubling. My mother went on a tear that lasted the entire evening and caused me to call the toll-free Alzheimer's Association helpline. That number is 1.800.272.3900.

I spoke with a very soothing woman who advised me to take a deep breath, calmed me down and then had an MSW call me back to help me with some techniques to calm my mother down. They also promised a followup contact the next day.

I made Mom and I each a cup of tea. Her's was laced with her Seroquel so she could rest. She continued to rant for several hours and said she wanted to leave and go back to Charleston. She believed that she could walk there. It was obvious that she is in complete denial about having Alzheimer's disease.

Once she calmed down, she asked if she could spend the night so she could leave in the morning.; she even mentioned going to a nursing home. My nerves are so fried, I'm ready to let her. I did come to the realization that it didn't matter what I said. If it wasn't this, it would be something else.


The entire series of events with the medicine began at 7:45 p.m. It is now 1:45 am and she is not sleep yet. God I am so tired *sigh*

No help available or is there?

I found the perfect place for my mother near the house. I went on a tour yesterday. it was clean, bright and well-staffed. prices ranged from $2500- $3400 per month. Guess what, we can't afford it.

My mother is a retiree who receives a pension which is over the Medicaid limit of $1580, so at this point I don't know what to do. My thought was to place her in the adult daycare at this facility, then transition her into long term care there. It would be familiar to her and she wouldn't be unnecessarily traumatized. So much for that.

They do have an adult day care program which is reasonable. It operates from 9-4 which means that someone other than me has to drive her back and forth because I work earlier hours. The facility provides lunch and 2 snacks, as well as games and trips. I think she would like it there.

The other facility I toured has hours that are more compatible with my schedule, but is slightly more expensive. We would not have enough to pay for her medications.

I wonder how many other families are in this dilemma?

Mom goes away...

I took my mom to meet her new geriatric practitioner. She is still in denial about her diagnosis and symptoms; and will not tell the doctor some of the things that she tells me about her nightmares, paranoia, hallucinations, and insomnia.

I usually have to mention these symptoms, especially as they seem to be getting worse. The result was an additional medication to help her sleep and something to calm the anxiety. This is something her doctors in Charleston suggested, but I didn't think she was ready. No, I meant that I wasn't ready to admit that my mother was at a stage where she needed anti-psychotics. The risks are scary as I mentioned before.

Alzheimer patients eventually get to the stage where they express their frustration through rage filled tantrum. They can no longer communicate, they way they used to and the rage is directed towards the person they see as the cause for everything that has happened and is happening to them...the caregiver.

I don't mean to imply that any of the behaviour is the my mother's fault. It's not, it is the disease as it progresses, mom goes away. This really sucks.

Would you like a heart attack with your dementia followed by a side of stroke?

Last night was not a good night. Mom became obsessed with the idea that someone entered her room and moved her clothes. This is an increasingly common theme with Alzheimer and dementia patients- loss and the idea that someone stole something.

Because I was tired, (it was after 10 pm), I was not as tactful as I might have been and the whole thing escalated from there. I walked away and listened to her rant until the wee hours. Mom also has nightmares, so she doesn't sleep.

Next week we visit a geriatric specialist who can help us deal with the paranoia that comes along with this package. I have been advised that we need to add anti-psychotics to the treatment. These are needed to calm the patient down, because without them the patient becomes easily agitated.

The side affects are stroke or heart attack. The key I'm told is titration. That's a word I haven't heard since high school chemistry.
To put it in perspective; a glass of wine a day is good for you. A case of wine a day is not good for you and can result in cirrhosis, etc.

I'm learning the hard way, that this is a progressive disease. I understand it intellectually, but it's different when you experience it first hand.
I don't think that I was prepared to take this on.

Read! Read! Read!

Last week I contacted the Alzheimer's Association and received a booklet full of information. They are located at 3800 Shamrock Dr. in Charlotte. There is a 24 hr helpline. the number is 800. 272.3900. Their website is www.alz.org

The Alzheimer's Association will provide information about programs that are available locally as well as referrals for Adult day care, home care, and medical services.

I would like to encourage anyone going through this with a loved one to make the Alzheimer's Association your first stop after you receive a diagnosis from a medical professional.

I have some things I'd like to mention conversations to have and/or to think about:

1) Have a durable power of attorney (POA) drawn up before the patient is unable to act. I was able to do this through a legal plan that my job offers. I paid nothing out of pocket. The attorney came to my mother's apartment before she moved and did the paperwork there. It will save you a lot of time.

2) Contact your loved one's financial institutions and explain the situation to them. Having the durable POA will help you. Alzheimer patients will lose the ability to manage money and often hoard money in different places.

3) Discuss with your medical professional whether a senior center or adult daycare center is the right choice for your situation. Seniors at the center may operate at a higher level than your loved one so an adult daycare may be better for your situation.
The GP, geriatric psychiatrist, and social worker all agreed that Adult Daycare was the better choice for my mother.

4) Don't spend a lot of time thinking about what-ifs. I beat myself up because I didn't recognize what was happening with my Mom. I lived in another state.

Just remember, try to connect with a support group as soon as you can. You'll need it. Good luck and God bless.

Alzheimer's is a horrible disease!

My mother was diagnosed with Alzheimer's this year. We first noticed that something was wrong during the Christmas holidays. There was confusion about dates and commitments she had made.

I suggested that I go to her next doctor's appointment with her; and she agreed. The visit to the doctor was even more difficult than I imagined because his first question to me was, "Do you think your mother should be living alone?" We spent the next 30 minutes discussing additional testing while Mom seemed content to tune out.

That began the long process of driving back and forth to Charleston every weekend. Calling Mom every morning and night to remind her did not help her manage her medications. Also, she wasn't eating. In fact, from November 2008 until April, 2009, my mother lost 25 lbs.

We very quickly saw that Mom needed more immediate attention so my daughter Imani went to stay with her for 3 weeks to help her manage.
When I came down after the first week, my 23 yr old daughter looked like she hadn't had any sleep at all. (She hadn't because Mom did not sleep, she catnapped.)

We finally got our diagnosis, and moved Mom to Charlotte on April 21, 2009. I'll keep you posted.