Friday, April 26, 2013

A Four Letter Word...Help


I am going to talk about a four letter word.  Help. Yes, I said it, help. That little word can mean so much, yet we seem to use it too infrequently, at least I know I do.

I have been that person who doesn't want to ask for help. I think I am capable of doing whatever needs to be done. I am strong-willed and a bit of a caregiver by nature, so I tell myself that I can do it all. I can be a supermom, a wife, a friend, and a caregiver and not think twice about it. Or can I?  In reality, just being a mom is a daunting task.  Add to that trying to have some “me” time, and things become even more difficult.  Then throw into the mix having a mom with Alzheimer's and my life can be downright crazy.

As a caregiver you have to ask for help, there really is no other choice. As much as I wanted to believe I could do it all, I quickly saw that there was no way I could. Before Mom was even diagnosed with Alzheimer's, I had to ask for help from our family doctor.  Mom was starting to admit some of the problems she was having. My family and my mom had just moved to Indiana, so we did not have a huge support base. I decided to start at the beginning with the family doctor and get his read. So, to the doctor we were going.

When I called to make the appointment, which I passed off to Mom as a check up, I explained that I needed to talk to the doctor before we came in. I wanted to be sure that he knew that the visit was not for a simple check up, but to get his opinion about her “state of mind.”  We agreed that he would treat this as a pre-screening for dementia or Alzheimer's.

Now, this may all seem quite sneaky, but it was what had to be done.  Mom's safety was more important than this little white lie. I have been lucky enough that, for the most part, Mom always has been a partner in this journey, and she has accepted her fate with grace. But as agreeable as she was, she was still frightened about what they might tell her.  Naturally so, but we had to get to the bottom of this and fast.

After the doctor had Mom answer a series of questions, and not have me answer for her, which is what I had been doing, I learned just what I was afraid of. She needed to go to a specialist to do an in-depth screening to see where her mind was.

I broke the news to Mom about what we were going to do. I told her that we had to see a geriatric neurological specialist who would be testing her for dementia and Alzheimer's. I could tell she was upset although she acted bravely. I think I was just as nervous as she was on the day we did the tests. It was like seeing a car coming before the crash, and we were about to get hit hard.

She was diagnosed with dementia with probable onset of Alzheimer's at 66 years of age. And so the journey began.

Help initially was not an option for me. I was going to figure this out. I wasn't even really dealing with my own emotions about the situation. I was simply in the “fix it” mode. I knew that there was nothing to “fix” with her diagnosis, but I was going to step in and be the one to do it all. Super Mom at home and Super Daughter to her, because in my mind, she wasn't “that bad” yet. The truth is you don't realize how bad they are until they truly let you into their life. Over the years, Mom learned to compensate and therefore it was not always obvious how much she was struggling with everyday tasks.

I did everything for her-driving, appointments, bills, shopping- it all fell on me. Even social interaction was on me. Because we moved to Indiana only a few years ago, she really didn't have any friends. She had one lady that she would meet for coffee occasionally. This put the burden of getting out and having another adult for her to talk to on me. I was now in a world that had me feeling like I was in a cyclone, swirling from one task to the next. I had small children, a husband, dog and home and now a mother with Alzheimer's to take of. There was little or no “me time.” I was going to need to ask for help. The role as Super Daughter was so easy. My kryptonite had found me and I was in need of other's help.
The first time I sort of asked for help was when I told the apartment manager where she lived about the diagnosis. The manager promised to keep an eye on her and call me if they saw anything strange. Then, with the urging of my sister, we hired a lady and friend to come and help out once a week. This was simply helping with mail, taking her out, going on a walk with her once or twice a week. She also checked in more frequently if I was out of town.

As I said, despite how difficult this was for Mom, she handled things with such kindness and grace. She turned things over to me quite easily. If my sister and I told her something needed to happen, such selling her car, she conceded. She really understood that we had her best interests at heart, thank goodness. Then it was time to contact the Alzheimer's Association. We wanted to enroll in their six-week class for loved ones of people affected with Alzheimer's and their caregivers. We had no idea what to expect.

We were one of four pairs that came regularly. The others were mostly husband and wife teams. We had dinner, learned about the disease- its stages, how to make accommodations, etc. - and we talked. It was a blessing. We were able to see others that were going through the same things. It was interesting to see how people's symptoms developed at different times. For instance, Mom was already having trouble reading, which was one of her favorite things to do. Yet, there was another man who could watch TV, read, and follow it all, but was having trouble walking and was losing his depth perception. We had a manual that we were able to take home and read and reference. Mom wanted to have that book all the time. I think she believed that knowledge was power. She often said that she wanted to know where she was in the stages.

Over the years the Alzheimer's Association has continued to help us.  We had most of Mom's legal affairs in order already. She had given me power of attorney, we had done a living will and a health care power of attorney, but we saw what was coming for us. We knew that she would need to go into an assisted living facility and then into a more secure health care facility for the Alzheimer's.  My sister and I wanted to make sure we figured out what we had to do with her assets and then eventually get her onto Medicaid.

The Alzheimer's Association was able to give us the name of an attorney who specialized in the elderly.  We met with him and he complimented us on what we had already gotten done.  He said, “You are about five years ahead of where most people are.” You see, we made sure that we took care of things long before they became a problem. We were proactive and, man, did that help. This attorney continued to help us over the years. We had more meetings with him as her savings rapidly dwindled and Medicaid was becoming a priority. He answered questions for us via email when necessary. He stepped up time after time, he helped us immensely, and he did it all pro bono. We are so very grateful for his help. We know that we had one more person who had our backs when we needed help.

I cannot say enough about the caregivers Mom has had over the years while she was in assisted living, then the health center, and now in the locked down unit. They have comforted her when she was upset. They have been company when she wanted to take a walk and had to have someone with her. They have been super at communicating. All I had to say was, “I just want to sit down and tell you what I have been seeing going on with my mom. I want you to do the same.” We would have those meetings to make sure we were on the same page, understanding what Mom wanted and needed at the time. They dance with her. They tell her she is beautiful. And they let her help, as she believes she has a job to do. She believes that she too has to take care of the other residents in her ward.

We can't do it all. We need help and it is okay to ask for it. Find a support group. Contact your local Alzheimer's Association chapter. Ask a friend, other family members, or someone at your church for help.  Remember, others want to help you and your family. It makes us feel good to help others in need. So when someone asks what they can do for you and your family, tell them and accept the help with grace, just as my mom does.

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