Dementia: Please Stop Asking

A couple of weeks ago I sat down with my Mom to have a long overdue conversation about “how she is doing?” See it’s not just that my parent’s are in their 70’s, it’s that for the last 5-6 years Mom has become the caregiver to Dad who has been suffering from Alzheimer type symptoms: memory loss.

We talked about how her life has changed in the last several years, and we talked about what people can do to help someone who is caring for someone with memory loss. One of the things she mentioned made me realize that I was not being there enough, and so I made a commitment to myself to try and call at least every other week, today was the first day of that commitment. I will be writing a more in depth post on our conversation, as well as a conversation with my Dad from the perspective of the person suffering from memory loss.

My parent’s have lived in the same community for over half a century, so they are fairly well known around those parts. One of the reasons that they are so well known is because they have always been very generous and given of their time, energy, resources and skills. One of those skills, of my Dad’s, has been as a mechanic and a jack of all trades, when it comes to home repairs. Growing up, over the years, I remember people coming to my Dad for anything and everything mechanical. I also remember him not only giving freely of his time, but also of materials to help family, friends and even strangers out. I don’t ever remember him charging Anyone.

Dementia: Helping Caregivers

Dementia isn’t like other illnesses that you can see or even treat, unless you live with the person day in and day out you might not even notice the subtle changes that are occurring. It’s an illness that seems to ebb and flow, sometimes there are good days, but as time goes on they become fewer and fewer. There are days where you wouldn’t even know that yesterday they couldn’t find their way around a town that they have driven in for 50 years or more.

The only person who truly knows what someone living with memory loss is going through, the changes that are occurring is their caregiver. Their caregiver sees the confusion, and hesitation as their loved one tries to do something that came as natural as riding a bike. They see the frustration and have to deal with someone that no longer has the ability to be reasoned with.

They have to take on more and more responsibilities, often while friends and family continue to make demands upon their loved one. Placing that person in unknowing danger, and increasing the stress that the caregiver is already experiencing.

If you truly want to help someone who is caring for someone with memory loss, dementia/Alzheimer’s the first thing you have to do is listen. Remember that dementia isn’t like cancer, or other illnesses that you can see, so often they are going to constant Dr. appointments, juggling medications, and specialists and doing it alone. Unfortunately, even if/when they do try to tell someone what is going on they are often looked at as overreacting. They carry the burden alone.

Listen as if this is the first time you have ever met, listen as if this is a job interview for your dream job, listen to hear and not to answer.   It’s easy to get into halfhearted listening, especially with family or friends whom you have known for a long time, remember you are there to help and you can’t help if you don’t REALLY know what is going on.

If they say something that you find hard to believe, be respectful and keep that to yourself again remember they are the expert they are the one seeing the changes whether small or big.  Think about it this way: if you have a car that you have driven for a long time and no matter how subtle you know that something is different maybe you can’t even put your finger on it to explain it but you KNOW.

It’s the same way for a caregiver, they notice the small changes and in their head they make a mental note to see if this is something that is a one off or a pattern.  Instead of trying to be the fixer, ask questions that will help them to open up more, so that you can gain a deeper understanding.

If you plan on helping make sure that you are willing and able to commit to being a consistent in their life. Their world as they know it has been turned upside down and NOTHING is consistent show them that you can be there. One thing I have done for my Mom is to put in my phone to call her every other week, and I have asked our oldest son to call her on the weeks I don’t.

We also will be stepping up on giving her breaks, a couple of weeks ago I left my husband at my parent’s and brought my Mom back home with me for a week. It was probably the only real break she has had. The reason that we did it this way is because my Dad does better when he is in a familiar environment, taking him out of his environment often results in heightened confusion. My Dad did really well with my husband because they get along so well, and Mom could relax knowing that someone she trusted was watching him.

Coming to Terms with Change: Dementia

                                                                                                               It is often said that change is hard, and as we get older we like it less and less. It is probably the one consistent in the life of the patient and the caregiver. These changes affect family and

friends as well we go to visit someone we have known all our lives and except for a few minor things that we often put down to age, they seem normal to us, and consequently we may inadvertently make things so much more difficult for the caregiver, by asking their loved one to do things, go places etc…. that could place their loved one in harms way.

In the case of my Dad he still gets people asking him to fix things, or help with fixing things. My mom has tried to explain to the same people over and over again that he no longer remembers how to do these things. Can you imagine if he tried to fix someone’s car? What if he forgets to set blocks or secure a hanging engine, or fills a tire too much and it explodes?  These are all real possibilities for someone who is losing their memories, and they can’t tell you what they no longer remember.

For all extents and purposes someone suffering from memory loss due to dementia or Alzheimer’s is slowly reverting back to the maturity and understanding of a child. Please be respectful and instead of asking what they can do for you be a friend or loved one and ask what you can do for them.