Being an Alzheimer’s Family Caregiver: The Long Goodbye

I was a Caregiver. I was the primary caregiver for my elderly mother who suffered for the last few years on Earth from the advanced stages of Alzheimer’s disease. It is a desperately cruel disease (most are, I know) in that it robs people (by and large) of their dignity and their independence at a stage in life when they need it most.

In the United Kingdom, the Alzheimer’s Society claimed in a recent survey that over 750,000 people suffer from Alzheimer’s and related dementia problems. In the United States it is calculated that an estimated 4.5 million people suffer from Alzheimer’s and that this figure has doubled since 1980.

Further alarming statistics

These highlight the fact that it is possible that in the US alone, the number of people suffering from Alzheimer’s could more than double to between 11.5 and 13 million sufferers by 2050.

Alzheimer’s disease is what is described as a progressive disorder of the brain that gradually destroys a person’s memory, ability to learn, reason, make judgements, communicate and carry out daily activities. As the disease progresses, sufferers may also experience changes in their personality and display such behavioral changes ranging from anxiety, agitation or suspicion right up to and / or including delusions and hallucinations

Although there is currently no cure for Alzheimer’s, new treatments are on the horizon as a result of accelerating insight into the biology of the disease. Research has also shown that effective care and support can improve the quality of life for individuals and their caregivers over the course of the disease from diagnosis to the end of life.

Consider the long term implications for Alzheimer’s sufferers

The hidden sociological impact will in reality be born on the shoulders of those who will be caring for the sufferers.  For it is indeed a bittersweet irony that those who care for the sufferers in reality suffer more than the sufferers do themselves.

This fact in itself has been largely responsible for another survey finding recently and that was the fact that Americans are equally afraid of caring for someone who has Alzheimer’s as much as they are of developing the disease themselves. Approximately 1 in 2 American adults are more apprehensive of caring for partner or loved one who has developed Alzheimer’s. Just less than 1 in 5 American adults have indicated that they are more afraid of getting the disease themselves (17%).

The real problem from an Alzheimer’s family caregiver perspective

The real problem is that no two people experience Alzheimer’s disease in the same way. As a result, there’s no one approach to care giving. Your care giving responsibilities can range from making financial decisions, managing changes in behavior, to helping a loved one get dressed in the morning.

Handling these duties is hard work. But by learning care giving skills, you can make sure that your loved one feels supported and is living a full life. You can also ensure that you are taking steps to preserve your own well-being.

Caring for someone who has Alzheimer’s disease or another illness involving dementia can be very difficult, time-consuming, and stressful (serious understatement here). Here are some more things a caregiver can do to help the person with Alzheimer’s disease while also reducing the substantial burden that comes with care giving:

The Alzheimer’s Family Caregiver should Stay Informed

Knowledge equals power. The more you know about Alzheimer’s disease or any other signs of dementia, the better you can prepare yourself to deal with problems that may arise.

 Share concerns with the person

A person who is mildly to moderately impaired can assist in his/her own care. Memory aides and other strategies can be created by the person with dementia and the caregiver together. This is easier said than done I know but you have to give it a try. But, and this is a big but (no laughs here please) it is essential that you realize that you are probably dealing with a person who if they have any cognizance at all, will be in denial.

For some unspoken reason, we were afraid to tell mom she had the disease.  We went months without telling her.  Then, one day, I decided to let her know what was going on.  I gave her a copy of the psychiatrist’s evaluation.  She never gave it back to me.  I believe she threw it away, as I never found it when I went through her things.

Perhaps that wasn’t the best way to handle it.

I just hated the way we all danced around the subject; never revealing to her what was really going on.  I put myself in her place and decided that I’d want to know what was going on so I could be a part of decisions that needed to be made.  At the time, mom was in early to moderate stage of the disease.  It was possible to have conversations with her and she would understand.

Unfortunately, Alzheimer’s disease was not something she wanted to talk about.  In fact, she denied anything was wrong with her.  I think because she saw her mother go through it, getting it became her biggest fear. So she was in denial about it most of the time.  Her pride, perhaps what kept her from talking openly about it with those that were closest to her.

Solve problems one at a time

A multitude of problems may occur that may seem insurmountable at the time. Work on one specific problem at a time — you do not have to solve every problem all at once. As the saying goes “success by the inch is a cinch, by the yard its hard” and in this case this has never been more true.  You might feel like you’re in a constant battle over something with your loved one.  Pick your battles, and what I did was ask myself is this hindering her safety?  If it was, that battle was worth fighting.  If not, I did my best to just let it go. (I wasn’t always successful with that!)

Use your imagination as an Alzheimer’s Family Caregiver

One of the keys to handling this disease is your ability to adapt. If something can’t be done one way, try another. For example, if the person only uses his or her fingers for eating, do not keep fighting; just serve as many finger foods as possible!  Your creativity will play a large role in your ability to do this.  If you are a parent, think about the things you did with your young children, and try some of those.

Establish an environment that encourages freedom and activity within limits

Try to create a stable, balanced schedule for meals, medication, etc. but also encourage activities that the patient can handle such as taking a walk or visiting an old friend. Remember, the person with Alzheimer’s Disease is not the only one whose needs must be taken into consideration. You as a caregiver have needs and desires that must also be met. First, try and find some time for yourself. Even though this suggestion may seem like an impossibility.  Find some time during the week where you can have someone else watch your loved one.    Whether it be a relative, friend, or neighbor — and do something for yourself.

The Alzheimer’s Family Caregiver Should Avoid Social Isolation

Keep up contacts with friends and relatives. It’s easy to get burned out when it seems like you have no one to turn to. Another way to establish contacts is by joining the Alzheimer’s Association or other such support groups in your area. Talking with other families who share many of the very same problems can be reassuring.  It helps you know you are not alone in your round-the-clock struggles.  This is something I wish I could had done and can’t encourage you enough to just do it.  When you’re in the midst of it all, it feels like you’re the only one dealing with it.

If joining a local group is something you just can’t do, I have a couple of options for you to consider.  I’ve really been giving this a lot of thought; wondering what I can do to help you, aside from my podcast and blog.  I asked myself what I wanted more than anything back in my days as a caregiver.  I wanted to feel connected.  And I wanted to feel like I belonged.  Going to my local Alzheimer’s Association support group meant taking mom out in the evening (which would have been a challenge) or finding someone to watch her.  So I never went.  I suspect many listening today are in a similar position.  I have come up with a solution! 

A New Kind Of Family Caregiver Support Group

This Thursday (Nov 21^st) I am hosting a live webinar event called Alzheimer’s/Dementia Family Caregiver Solutions.  I will be covering how to find joy in care giving a loved one with Alzheimer’s/Dementia, managing caregiver stress, especially during the holidays, and of course, I’ll reveal my new solution to feeling isolated.  I’m so excited about this because this solution has never been done before.  No, it is not another Facebook group, though I will build one of those, as well. 

I originally planned to launch this sometime next year, but I realize that the holidays are particularly difficult for caregivers and I want to help.  My solution will do that. If you’re even the least bit curious, go register for the webinar at AlzheimersCaregiverRadio.com/Register.  Register even if you cannot attend because the session will be recorded and those that are registered will receive the replay.  I’m telling you, you don’t want to miss this event!

As an alternative, there are many Facebook groups available that you can join.  You’ll find a lot of support and suggestions in these groups from their members so you won’t feel so alone.  That being said, there’s really nothing like a support group that meets live (locally or virtually).   Find one that you can attend and create new friendships along the way.

Alzheimer’s Family Caregiver:  The Long Good Bye

It is a long good-bye as you watch your loved one lose a part of themselves.  They lose their memories, including who you are or how you are related to them.  In addition, they slowly lose their ability to take care of themselves properly.  What used to come easily to them, now becomes a challenge.  With each change, it’s a new good bye to who they were.  For my mom, it was a slow progression over 12 – 13 years.  As a family Alzheimer’s caregiver, I’m grateful it was slow.  There was plenty of time to provide her with comfort, joy and love.  At her core, she was still my mom.  Even though that part of her was slipping away each day.  It was my honor to be with her to the end.

At the end of the day, it’s more about the memories you can create for yourself with your loved one that will come back to you long after they’re gone.  So create the best long good bye for yourself that you can.