Is it depression or dementia?

 

I suffer from Major Depressive Disorder and along with that I am experiencing many symptoms that led me to believe I was in the early stage of dementia, like my Mom (who is now in the late stage).  They were so disturbing to me that I asked my doctor for a referral to the Geriatrician who diagnosed my Mom with Lewy Body Dementia.  The doctor asked me a lot of questions and gave me the test that is used to make a diagnosis.  Thankfully, she assured me that I do not have dementia.  She also said that it is not unusual for family and caregivers of those with dementia to be on high alert for signs of the disease in themselves.  She believes that my symptoms of forgetfulness, lack of concentration and focus,  inability to make decisions or multi task, etc are most likely due to my depression & anxiety (and possibly a side effect of some of the medications I am taking as well, for other conditions).  Read this article from Very Well for more information about the cognitive symptoms that can affect someone with depression.  Bottom Line as I understand it – if you know you are forgetting; it’s likely not dementia.  Those with dementia do not have the brain chemical to know they have forgotten.  Of course, having said all of this, I am not suggesting that it is always the case for every person with depression and can’t or won’t be dementia – only a trained physician can make that call.  But I am saying that there is hope. Depression is said to be treatable.  I fear having dementia more than any other disease because I see what my Mom’s life has been reduced to by this terminal disease.  I feel helpless.  The only thing I can do for her now is to give her love and affection.  She may not know who I am but she knows that I love her.  (I can tell by the smiles and hugs in return)

Very Well.com is an excellent resource for articles about dementia, such as Lewy Body Dementia and Alzheimer’s.   Take some time to visit verywell.com.  I think you will find some interesting and informative articles there – not only on dementia, they have lots of topics under the categories of Conditions, Living Well, Family and Health Care.  It appears that they take the time to update articles too as new information becomes available.  I hope to read one day about the cure that has been discovered for dementia!

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So… What About The Spouse?

Last Friday was my birthday and I know Mom would have come to see me if she were able.  So I decided to go to her instead.  I was feeling very emotional … a real need to have a hug or some sort of interaction with her to feel her love for me again.  As I sat with her, that emotion only grew as did the sadness for the condition she is in… eyes closed, resting in a chair in a hallway with residents passing by or stopping to chat with me.  I wanted some privacy with my Mom.  After much consideration, I finally got the courage to sit close enough that I could put my head on her shoulder.  I thought it might make me feel better somehow, but instead I felt foolish and disappointed; without a response from Mom it was pointless.  So, I just sat with her and held her hands and pondered this very sad situation.  It occurred to me that as difficult as this is for me, as a daughter, I can’t imagine how it must feel to be a spouse of someone with dementia.  I have read a lot of articles on caregivers but they rarely address this issue.  The article I have linked here titled ” Till Dementia Do Us Part: Alzheimer’s Caregivers” from AARP gives a glimpse into how it feels to be that spouse and how some people are dealing with it.  I know some will agree and some will not, but I don’t think anyone can judge a person in this predicament unless they have spent every day of every year going through what they have… and I wouldn’t wish that fate on anyone!

Here is a short video from my visit~
2015 My Birthday Visit: http://youtu.be/CA1GpildmIg

Did Lewy Body Dementia contribute to Robin Williams death?

Click the link below to read Lewy Body Dementia Association’s article.

LBDA comments on Robin Williams.

It seems so long ago that we saw changes in Mom that were concerning enough to seek a diagnosis and help from her doctor. But in thinking back prior to when we realized this was more than just “normal aging” there were small signs that could easily be justified away…and were. Symptoms fluctuate in the beginning which I believe must make it more confusing for that person. I also think it’s human nature to preserve our dignity and not admit there is a problem. (That is why I believe the stigma attached to dementia needs to end. It is a terminal illness.) There came a day that Mom broke down and admitted that she just couldn’t take pretending anymore. It was taking too much energy. According to her specialist in the field of LBD it is not uncommon for someone who is very social and good at reading people via expression or body language to hide their symptoms by using all of the skills they have to do it. Mom was a master. That is, until it became too much. No one knows what was going on inside the mind of Robin Williams. Personally, I believe it possibly could have played a part in his decision to end his life…but we will never know. Regardless, it is a very sad loss. He was a truly talented actor and gave us so many wonderful movies to warm our hearts and make us smile.
Rest in Peace Robin Williams

Elder Care, Senior Care and In-Home Care for Seniors & Adults – Comfort Keepers – Canada

http://comfortkeepers.ca/

This company seems to have to right idea when it comes to caring for someone in their own home. If you are in need of this type of service, click the link above and check them out. They have offices across Canada and this may be just what you are looking for. They say they even have staff trained specifically in the care of people with dementia. I have not used their service but l sure like what they appear to be offering.

♥We are all just walking each other home♥

Caregiver, family & friends …Grief & Beyond.

It is called “grief”, but I believe that what I feel, watching my Mom slowly slipping away, goes beyond that.

Mom is now in the late stages of Lewy Body Dementia and I am constantly searching for ways to improve the quality of her life. I have come across suggestions like the use of dim lighting, soft music and a calm quiet environment.  But how do you accomplish that in an institution?  Mom has been extremely bothered by loud talking or noise for a couple of years now, but there are residents that can’t help the behaviors that afflict them…tapping, clapping, chanting, singing, etc. All I keep thinking is that there must be a better way for these people to live out the rest of their days with some privacy, dignity and personal care that more resembles how they would look after themselves if they were capable.  My parents taught me to empathize with others, put yourself in their shoes. I do that with Mom trying to figure out how she sees the world and if there is something I’m overlooking that could make a difference in her world. But right now I am at a loss.

I have done a lot of reading about dementia, caregivers, caregiver stress, how to best look after your loved one with dementia and the importance of looking after yourself.  But what seems to be left out of many articles, is how this disease will make you feel.  The effect it will have on your mind, your heart and your soul.  Sometimes the sadness, helplessness and grief I feel is so deep that it seems to be in a place I didn’t know existed.  Deep in the depths of my soul … the core of my being. Where there are no answers, no one to make the hurt stop, a bottomless pit.  It is an endlessly dark, lonely, confusing place. No one seems to talk about the fact that you may be so busy caring for and trying to figure out each change in behavior of your loved one that these feeling can build up slowly, sneaking in, until one day they find their way to that place… deep within you.  And even if you are able to escape briefly,  you know it’s there and the wave of emotion will hit you again and again and again…like when you are alone or see a reminder of the person they once were or walking out to your car after a visit.  Mom looks like my Mom and my mind tells me she should act and react in the same way she had in the past. But what my mind expects and what actually takes place couldn’t be further from each other. It doesn’t make sense in my mind.

There just isn’t enough known about this disease. We do know, without a doubt, that it is cruel and relentless whether we choose to accept it or not. And how can we accept it? Acceptance is suppose to come after we feel we have done everything we can…and we let go. To me acceptance feels like I am giving up on my Mom and I am not ready to stop looking for answers. 

I have also been reading about grief.   According to Paula Spencer Scott http://www.caring.com/articles/anticipatory-grief-coping-with-special-caregiver-stress
….The friends and family of someone with dementia experience two difficult psychological states at once… Anticipatory grief (coping with the very real feelings of loss for someone who is still alive) and Ambiguous loss (interacting with someone who’s not fully present socially or psychologically). Although there is truth to both of these, I personally feel neither come close to describing how some caregivers, family or friends feel in this situation. This roller coaster of emotion can be seen in the eyes of other families visiting their loved one. The knowing glance of compassion for your similar situations. Why does the depth of these emotions seem like such a well kept secret.

The word grief makes me think of death, not of what a person may experience living with the slow loss of a person who is still a part of their life. Upon death, those left behind start the grieving process. With dementia you grieve every day and then it continues in a different way after that person passes. I think a new word needs to be invented to properly describe what we are going through and more information needs to be available to help prepare the families of those with dementia.

I will use words from the TV show “Grey’s Anatomy” because I feel it is very well said…
“Grief may be something we all have in common but it looks different on everyone. It isn’t just death we have to grieve. It’s life… it’s loss… it’s change. The worst part of grief, is that you can’t control it. The best we can do is try to let ourselves feel it when it comes… And let it go when we can. The very worst part is the minute you think you’re past it, it starts all over again. And always, every time… It takes your breath away.”

♥We are all just walking each other home♥

June 2013 ~ The Good Old Days

I was looking at pictures and videos of Mom the other day. I thought about how I felt at the time they were taken, considering Mom’s stage in dementia. I’m so happy that I took them along the way and I will continue to capture those precious moments because I realize now how quickly those pictures have become “the good old days”.
image

We are all just walking each other home…author unknown

Life on Mom’s Lane With Lewy

As of March 12th Mom has been in Long Term Care for one month. We didn’t expect it would be easy by any means but this is beyond what I could have imagined. You can anticipate many scenarios but not the emotional rollercoaster that will come with it. I can’t speak for my Dad, but you just have to look at him to see the toll this has taken on him. I can see that he wants nothing more than to do the best he can for Mom and even gave another try at having her at home again. The sad truth is that she doesn’t belong at either. She still has many “in” times that make you want to take her home. But then you see her so confused and know that she requires too much care to live at home again. What a heart wrenching dilemma with no right answer.

There is so much information out there about how to handle dementia sufferers but it doesn’t really prepare you for what reality serves up. How can it? You can’t paint everyone with the same brush any more than you can use the same strategies on all children. People are individuals with their own history which colours their present experiences. I’m lost, sad, scared, frustrated and angry at this ruthless disease that has stolen my mother from us (and all the other countless people watching their loved one fade away). You can see it in their eyes. I can’t really explain that but I’m sure I’m not the only one that will tell you that.

I am also angry that in this day and age we haven’t come up with a better plan to care for people living with dementia. The more I see the more questions I have. There must be a better way!

As a small example, I will share the events of Sunday:
I went to see mom at lunch time to sit and have lunch with her. (Yesterday one of the ladies that normally sits at her table passed away. She was a beautiful woman, traveled the world and was still able to talk about it. She and mom could talk to each other, where as the others at the table are unable.) As I was on my way in, I ran into a man that told me that Mom has been upset and looking for her husband and daughter. He said she was standing on the window ledge and banging on the window yelling. He helped her down and tried to calm her. I thanked him and went in afraid of what I was going to find. Mom was in the dining room but told the staff she didn’t want to eat. I greeted her and she immediately took my hand and told me we had to hurry up and she took me to her room. She had packed her loose belongings in the basket of her walker and said I was taking her to her husband. I tried to stall in hopes that it would pass. (compassionate fibbing, diversion, etc) No one trains you in how best to deal with these situations. We are told the staff are fully trained and the ones in this locked area have special training with dementia … Anyway we dance around the subject (mom is not giving in & she has lots of ideas for me on getting out) But I am finally able to convince her to go down to the lounge at the end of the hall where we can see him come in. He said he was coming so he’ll be here. I don’t really have a plan here other than hope I can somehow engage her in a conversation and distract her long enough to forget her mission. She was in such a state she had no plans of talking or doing anything but getting out. So I don’t know what else to do but call Dad. I was hoping for a nice visit with Mom and let Dad get some much needed rest. I tell her I’ll find out if he’s on his way cuz we don’t want to miss him. Help…someone please. Can’t anyone hear me screaming in my head? I do get ahold of Dad. He’s going to come right away. I feel horrible for calling Dad over, shouldn’t I be able to handle this? And then, as we are waiting she starts to get teary and says…”Did you know they want me to stay here for the rest of my life?” I was dumbfounded. (It certainly gave me the answer as to why she was in such a panicked state) How do I respond? It broke my heart. Thankfully I escaped having to respond because Dad walked in the door and she got up to go to him for a hug and a kiss.

I don’t have any idea as to what the answer is for people living with dementia…all I know is….there has to be a better way!

If you’ve made it to the end of this long post, I thank you for reading it.

Wishing everyone a very happy new year. I hope that this year brings each one of you love, happiness and good health, every moment of every day.

Happy Birthday Dad

My Mom has Lewy Body Dementia.  This disease is ruthless not only to the person who has it but for the caregivers and family of that person.  Today I want to honor my father, caregiver to Mom.  I think it is unfortunate that the caregiver is, kind of, forgotten with the attention placed heavily on the person we are losing right before our eyes.  I just want Dad, and all those dedicated caregivers out there, to know that they are not forgotten in our hearts.  For without their love and care, our loved one would be confined to a long term care facility.  I realize that will be inevitable, but in the meantime…Dad keeps Mom in his care… despite the obvious drain on himself.  “In sickness and in health”   Those words are in the marriage vows but that doesn’t guarantee your partner will be in for the long haul.  And I can’t think of another disease that would be more challenging to live by those words. Mom has no idea how much Dad is doing for her or how much he is giving up for her.  That is true unconditional love.  You are my hero Dad … you have been an inspiration to me throughout my whole life and I am so proud to say … you are MY Dad.

Happy Birthday Dad I love you xo

About Information I Share From The Lewy Body Dementia Association

To learn more about LBD,
visit http://www.lbda.org

LBD Caregiver Link:
I -800-LEWYSOS
I-800-539-9767

support@lbda.org

By supporting the work of LBDA, you too will be
Increasing Knowledge
Sharing Experience
Building Hope
Lewy Body Dementia Association
404-935-6444
http://www.lbda.org
The information set forth in this material is intended for general
informational use only. It is not intended to be medical, legal or
financial advice or to take the place of competent medical, legal or
financial professionals who are familiar with a particular patient’s
situation. Each individual is advised to make an independent judgment
regarding the content and the use of this information.
An Introduction to
Lewy Body Dementia
A special publication for people newly
diagnosed with Lewy body dementia
and those still seeking answers.
You don’t have to face LBD alone.
Lewy
Body
Dementia
Association,