An amazing day of knowledge!

Today, I was able to fulfill a goal of mine since moving to Arizona. It was a personal goal and one I was most passionate about…and thanks to a good friend of mine who has connections into Arizona’s medical community, I was able to meet and visit with Dr. Thomas Beach. Dr. Beach (or just Tom, as he directed me), is an MD, Head and Senior Scientist at the Civin Laboratory for Neuropathology, and Director of the Brain and Body Donation Program, (which are both part of the Banner Sun Health Research Institute here in AZ), specializing in Alzheimer’s and Parkinson’s research. In other words, he is a brilliant researcher and doctor making strides at battling the Alzheimer’s epidemic.

We toured his ‘brain bank” as he explained the various findings they continue to uncover from the brain tissue they acquire. One fact that struck me: his brain bank will freeze the brain tissue on someone who has expired within 3 HOURS upon their death, if they are a brain donor. They always have over 1,000 at any one time in which to study. And they are the ONLY research institution in the WORLD that is able to do this, primarily because Dr. Beach feels the longer the tissue is allowed to break-down, the less time they have to determine how Alzheimer’s compromised it. Amazing.

I had a few specific questions for him, as understanding and communicating about Alzheimer’s disease has become my mission. One question for him was: How close are we to finding a cure?   His answer was bleak: “Not very!” The sad part about that is: 20% of people over 80 years of age will develop some form of dementia and there’s nothing we can do about it. At least, not yet. But he and his team continue to test and focus on answers.

Another question I had was more about me than anything: Is there anything (any drug) a person of high risk (like someone having several blood-relatives who are or have suffered from Alzheimer’s…like I have) can take to block the disease or keep it at bay? His answer: “No, unfortunately, there isn’t.”

‘However’, he continued, ‘that isn’t to say there aren’t things one can do to help the brain handle the disease better’. It didn’t sound like much of an alternative, but I listened. He spoke first about DNA testing…because he knew I wanted to know the pros and cons of that. There are reliable tests that can determine if someone has the E4 gene (the Alzheimer’s one), of which there are two. Those tests would not include the ones you can buy online through Amazon (like “23 & Me”, etc). A credible DNA test is administered as a blood test and sent to a specific lab that specializes in testing for Alzheimer’s disease. The advantage of knowing if you have the E4 gene is rather obvious: you can prepare family & friends (and maybe yourself) for what is coming. The disadvantage is that it is haunting for some. Like waiting for a title wave or an earthquake to hit. The knowledge can very easily bring on undue stress and depression. BUT…most importantly…one may have the E4 gene (from one parent), but may have other genes from the other parent that could block the disease from striking. If a person took the test and it was positive, they would have stressed and worried for nothing. Researchers and specialists just can’t be sure what will happen to each and every one of us.

He spoke secondly about heart health as being one of the best defenses against Alzheimer’s. A stroke can do more damage to the brain than Alzheimer’s, so by focusing on taking care of our heart, we strengthen the way our brain handles the disease. Heart health is the stuff we’ve always heard about: eating right, trying to keep cholesterol down, exercise, lowering stress, etc.  But to note: there has been no substantial proof that playing brain games (crossword puzzles, reading, etc) or staying away from processed foods impacts Alzheimer’s disease one way or the other.

The one thing Dr. Beach reiterated was…there is NO way to know who will get Alzheimer’s disease. So I guess the decision for me to get a credible DNA test or not was somewhat answered…..I think.

 

 

Advertisements

Blog #30 It’s Been a Year

 

We certainly all know how fast time goes by. One moment it’s the New Year and then suddenly its Christmas again…with everything in between! How does that happen?

Something else that is a certainty is that all Alzheimer’s patients are different. The disease has similar traits, of course, but how they affect each person and in what time frame can be very different.

My mom has been in her care facility for just over a year. Another example of how fast time flies. I can remember the day I brought her there like it was just yesterday. While having her in a place that cares for her 24/7, offers a warm environment, and keeps her well-fed and clean is a Heaven-sent, it comes at a steep price tag.

But let’s evaluate the price tag for a minute. While I worry about the cost of her care each time I write the monthly check, I have to admit that giving me piece-of-mind and freedom from the daily worry of her condition often outweighs my anguish. I KNOW I would not be able to care for her in the manner in which she is being cared for if she were still living in my home with me. Nor would I be able to create a life for myself if her care was a 24/7 impact of that life. I remember what the caregivers told me when I brought her to her new home: “OUR job is to take care of your mother and YOUR job is to love & enjoy your mother.” That comment always makes me feel better.  And it’s a true one.

But it doesn’t stop me from worrying about the financial hit. Remember….I am retired, an only child without children or a husband. And I lived on one income for many many years without the benefit of a partner’s income. I certainly have funds invested, but no one knows how long this monthly drain on my financial security will remain. She could be lost in this horrible disease for another year or so.

And THAT is the haunting feeling many of us have in dealing with a loved-one in a care facility. The facilities often do NOT accept insurance and they are definitely NOT covered under Medicare. It is a horrible thing when we have to worry about the financial part of care giving when we are most certainly worrying about our loved one. It can make us feel guilty that the financial burden even enters into our thoughts. But it does. The alternative that some of us ponder is to keep them at home to save money and to be with them. But statistics have proven that is NOT the solution once they deteriorate beyond our ability to physically care for them.

My mom’s condition has worsened and deteriorated considerably since she’s been at her care home. But not because of their lack of care and attention. Research has indicated that once an Alzheimer’s patient gets to a facility and doesn’t have to feel embarrassed or worry about what they CAN’T do and are among people that are like they are, they are able to let go and just be. While that kind of comfort isn’t always well-received by us family members, it really isn’t about us. It’s what’s best for our loved-one.

So…what does all this mean? What it means to ME is that I want my mom to be cared-for the best way possible. The best way I can afford. And the best way that takes away some of the care giving burden from me. The financial worry will always be a concern….of course. But not enough to compromise on her care and on what little time we have left.

 

 

The End is Near….

It has been six months since I placed my mother in a group home care facility for Alzheimer’s patients. The care she receives there is very good. She always looks clean, she is well-fed, and they make her as comfortable as possible.  But I am losing her.

I used to visit her about every other day. Then it was more like three times-a-week. Now it is once-a-week. Why? Well, it’s certainly not because I’m too busy to go there or that it’s too far away or that I don’t love my mother enough! The reason for that is it makes me sad to see her there….even on a good day. By a “good day”, I mean, a day that she knows it’s me; a day that means she is not combative or in head pain; a day that we have a small amount of conversation. The people who care for her are nice and converse with her the best they can. But, mom is in a place where she is unable to retain an attention-span or care much about the things around her. When she knows it’s me, I suspect she knows I’m someone special, but I doubt that she truly knows I’m her daughter or what a daughter really means.

About a month ago, Hospice contacted me after talking with mom’s care staff. Their call scared me at first because I only knew Hospice as providing end-of-life care. However, I learned that they offer specialized care services, as well, as an extra step to stabilize mom and keep her as healthy as possible. Such services are covered under Medicare and include a nurse who comes every- other-day to check her vitals and administer any meds she may need, a social worker to make sure she’s being cared-for properly by the group home, and a spiritual advisor who will pray with her should she want that. The nurse calls me once-a-week to keep me updated on her condition and to offer me any suggestions.

One of the things plaguing mom recently is several UTI’s (urinary tract infections), something quite common in Alzheimer’s patients. They are common because patients often ‘forget’ to drink water (which is where the care staff helps out) and don’t urinate as frequently as healthy people do because they aren’t as active as they once were. But these UTI’s can be dangerous if they are not caught and cleared up quickly.

The woman I see laying in the bed or reclined in the family room chair each time I come to visit isn’t the woman I once knew. She is alive, but not living. She is my mother, but she doesn’t mother. She is fading and moving through the last stages of this horrible disease. And all I can do is watch. And pray (to whomever represents my spiritual strength) to take her and give her the peace she deserves. That is my preparation for the inevitable that is coming soon.

The take-away here is that there ARE people and organizations around who can help with this inevitability. It is NOT in our best interest to hide our heads in the sand, no matter how much we’d like to. Hospice is a Heaven-sent. Use them. Let them help you and your loved one as they are helping my mom and me. Believe me, it is the best thing you can do…and one of the only things!!

Expectation and Acceptance

My mother is in a care facility for Alzheimer’s disease. Those words are still hard for me to say out loud sometimes. In fact, I can be out to lunch with friends, or at a meeting or a movie or walking my dog, and sometimes those words hit me like a bolt of lightning and the tears begin to fall.

She IS in a care facility. And it’s a nice one. It’s clean, spacious, nicely appointed and not far from my home. The staff is attentive, knowledgeable, and always trying to make her comfortable. She is indeed well cared-for in her new surroundings.  And I am grateful.

But all she seems to do is sleep when I’m there. No more conversations about whatever, no more football, no more Wheel of Fortune. Oh, those things are all there at the house she’s in, but she has no interest or focus to enjoy them. When I come to visit she sometimes knows it’s me–sometimes doesn’t. She generally keeps her eyes shut so the light can’t get in. And occasionally she will smile & call me honey when I talk to her….but not too often. She does enjoy (I think) the CDs I have brought for her….the likes of Frank Sinatra, Tony Bennett, and Celine Dion….three of her favorites.

The first few visits left me terribly sad when I would leave. But then that word “expectation” crept into my head. My expectations of how she would be were just way too high. I wanted her to be a certain way and expected that it would be so. But the reality was that it was NOT going to be that way….anymore. I always tell people the hardest part of caring for someone with Alzheimer’s is trying to get over the denial part. Be more accepting of it. Say the words ‘Alzheimer’s disease’ out loud until it is absorbed into your being. And yet, the word “expectation” is often ignored.

Expectation is defined as ‘the degree of probability that something will occur; the act or state of looking forward or anticipating’. My expectation of visits with my mom would be that I would walk into the room and she would give me that warm, loving and wonderful smile, and be almost gleeful that I had arrived. And when that wasn’t the case, I would be hugely disappointed and saddened. I couldn’t change her mood. I was powerless. I didn’t matter anymore.

Well—once I stopped making it about ME, expected less and accepted the reality of the disease and taking each moment one day at a time, things got better for me. I would sit and hold her hand, give her water, make sure she was comfortable, relish every smile…and leave knowing that this was the best it was going to be at the moment. That she was in good hands and not under my day-to-day care where I would be stressed and frustrated…and inept.

I still am her advocate, however, checking to be sure the care she is receiving is gentle, thorough and done with affection. Which it is. I had suspected she might be suffering from depression…a common symptom of Alzheimer’s. So, the staff called her doctor, brought her in for a bit of testing and he prescribed a mild medicine to help with that. It seems to have made a slight improvement. But slight is welcomed!

The take-away here is this: expectation in anything can be your worst enemy if we let it knock us down because it didn’t measure up to what we want or need. Acceptance can be our salvation…or our downfall, depending on how we interpret it.  I’m going with taking a deep breath, doing what I can for her while I’m visiting, and knowing that the situation is what it is. And…praying for strength.

Realization

It has been close to two months since I placed my mom in her care facility, but it feels like so much longer. Certainly a lot of adjustments. The biggest one for me has been looking at life without her. That realization takes on many elements: the huge change to my family unit, my own mortality, what the disease may bring to ME, and being so thankful for my mom’s relationship & memories.   But it is also about freedom. MY freedom from the 24/7 caregiving responsibilities I had dedicated to her for the past four & a half years; the permission to feel that freedom and relief; and the reality of being able to take back my life.

But for now, it is mostly about dealing with the disease and the toll its taking on my mom. Our visits are very different now and they seem to diminish each time. I am told she yells at and hits the staff when they proceed to give her a shower. She is now in a wheelchair which moves her from place to place. The staff feeds her instead of her feeding herself.

They have explained her behavior this way: it is the disease taking over by allowing her brain to ‘relax’ from the pressures to keep up with the daily tasks that are considered normal behavior (conversing, feeding oneself, response). She is now accepting to let people take over those tasks for her. But by the same token, she is angry that she is unable (or unwilling) to perform things on her own and having people tell her what to do (showering, eating, going to the bathroom, etc). It’s just so sad.

Sometimes when I visit, she barely knows me. Other times, not at all. She doesn’t eat much, even when fed, so she has lost weight. She hardly engages in conversation anymore. I brought her a CD player and some of her favorite CDs so she could listen to music. She seemed to like that….but not that much. I brought her some of her favorite cookies and she took two bites. She wasn’t interested in eating the rest. She doesn’t remember my dog at all when I show her pictures…and they spent all day, every day together. I don’t say this to make you sad….although it is tragically sad. I say this so that you can be somewhat prepared for the next step.

Our next step came very quickly. It is like night & day to see the decline in just eight weeks. Seeing how sad I was coming from a recent visit, a friend of mine asked me why I go. Was it for my mom or was it for me? Excellent question. I think it’s a little of both. I want her to know that I am here and with her, somehow making her feel more secure and at peace and not alone….although I doubt it does. And I guess I do it for me…to ease the guilt and frustration of not being able to DO anything to fix this nightmare. Intellectually, I know I have done all that I could being an unskilled caregiver. But emotionally, it just isn’t enough.

So I go to help ease the pain for both of us. Unfortunately, I’m losing that battle.

 

 

 

 

Placement….

I knew the day would come when I could no longer care for my mom in the manner it took to keep her comfortable. I knew it because I had read about it over and over. I knew it because the support group I attend spoke about it. I knew it because that is the progression of Alzheimer’s disease. I knew it because all the people I know whose loved ones are victims of the disease have experienced it. Here is a perfect example of logic and intellect colliding with emotion. I knew the day would come….but when it did, I just couldn’t believe it.

I delivered mom to her new care facility: I brought what little stuff she had from my casita, helped arrange her new room the way she liked, gave her a big hug & told her I loved her with all my heart…and left. I wasn’t allowed to return for two weeks. It honestly felt like someone had socked me in the stomach (on the one hand), but I also felt an enormous amount of relief (on the other hand).

The kind people at her new home said their job was to take care of her…and MY job was to enjoy her. That sounded like a good plan. I could deal with that. So when the day finally came when I could visit her, I was so excited and anxious to see her. I came through the beautiful living room and found her sitting in the family room. Her face lit up when she saw me. It was wonderful. There wasn’t too much to talk about since she doesn’t remember much of what happens during her day, but we laughed and hugged….that was all we really needed. I left after about an hour…and would return in two days.

That day wasn’t as positive. She was still in bed when I arrived in the afternoon because she was suffering from one of her horrible chronic headaches. But when I work her up, she was happy to see me. I could see the pain on her face, but she smiled and decided to have some lunch. So, they brought it to her and we sat together while she ate. Then she said she needed to lie down, so I kissed her and said goodbye.

Putting our precious cargo in the caring hands of others is exactly the right thing to do as Alzheimer’s patients decline. These professional caregivers are emotionally removed from the horrible reality of the disease and can care for our loved ones efficiently and without hesitation. The constant reminder of how mom is declining surrounds me mentally but not visually like it did when she lived here. That is the healthy ‘break’ that people speak about when warning family members who are caregivers…the ‘break’ from the visual picture we get of our loved ones in discomfort and decline 24/7…the frustration and sadness that we feel all of the time while trying to enjoy them.

I continue to work on getting over the guilt and the powerless feeling of not being able to control the situation. I am slowly getting my life back, but it is a new life. Life with my mom in a care facility. The reality of this is that I will have to go through this loss again when she passes away. Hopefully, I will be stronger and better prepared. Hopefully.

 

 

Dealing with the Holidays

Growing up, Christmas was always a bit over the top. Maybe because I was an only child and very close to my parents. But they loved Christmas just as much as I did and they made it fun and magical: numerous Christmas shopping trips with mom followed by lunch to celebrate our efforts; tons of presents under the tree with dad and I counting to see who had the most; lots of fabulous food to eat and decorations to admire; watching “It’s a Wonderful Life” and singing carols; staying up until midnight on Christmas Eve, then opening presents, followed by a wonderful late-night buffet; Christmas Eve mass. That’s what Christmas was while my dad was alive and my mom was well. Some of the best memories of my life. But that has certainly changed over the years.

Celebrating holidays with someone with Alzheimer’s is clearly different. One day is just like another in their world, so that feeling of togetherness and warmth that the season usually brings changes in perspective. For many years now our holidays have been very low-key. My dad left a huge hole in my life when he died…even to this day. But I have tried to make them special for my mom as she has aged: a beautiful dinner, presents, carols and DVD movies. And although I know she appreciates it, the excitement and joy in her eyes have waned over the years. Age can do that to people…as can memory loss! Note to self: don’t try so hard! Expectations are often the enemy.

This year, the holidays will definitely be different with my mom being in a care facility for the first time. I don’t think she will feel much of a difference as I will visit almost daily. I will bring her presents and goodies and try to keep things as happy and upbeat as I can. But I sure will know that it’s different. And so will Buddy.

I suspect there is much sadness the first year of this kind of change…it is inevitable, I guess. But it’s all a learning curve for me. Remember….I have not known life without my mom. We have spent holidays together for 66 years!!! And on top of all that…this being the first year of change and the Thanksgiving celebration…all of my friends were away, either traveling or going to someone else’s house. So, Buddy and I were on our own since I still wasn’t allowed to visit mom yet.

I have been single for a very long time. I may be alone at times, but I am rarely lonely! I work hard at that, though. So, I had a remedy to survive this Thanksgiving and Christmas. 1) Admit and accept that it will be emotional. Example: There will be tears. OK. Tears can be a release and a cleansing tool. And….they will go away. 2) Find things to do that you enjoy…..even without people or that special loved one. Example: I had a casita to finish decorating. And there was football on tv. And there was Buddy to walk. And a turkey to cook. And a good book ready to be read.  3) Don’t be afraid to reminisce as well as think about the current situation. Example: Be grateful for the wonderful memories and savor them! And in my case, there is the knowledge that my mom was being cared-for in a warm and friendly place with turkey and all the trimmings.  Let’s hope my remedy works!

No one ever said it would be easy. But I have learned that time is an ally. And strength comes from within. And from faith, if you are so inclined.