Wednesday, April 27, 2016

There's been a diagnosis...now what?



*The following are a list of resources that you can use should you find your family dealing with a dementia diagnosis.  These are resources that have helped me, personally.  I am not a medical doctor and none of this should be construed as medical advice or direction.  Consult the appropriate physicians when possibly dealing with dementia and related issues.*

Since sharing our family's story with the horrible disease that is dementia, I've received many lovely comments, emails and messages with empathy and compassion for the toll it has taken.  I've relayed many times how this disease sucks and how truly an actual death is easier to deal with than having someone you love no longer know you.  But what happens if you or someone you know is suddenly being struck with this reality in their own family?  Where do you turn?  What can you recommend?

Below is a list of things that have helped our family and us as individuals cope with this seriously underfunded but rapidly growing disease.  I hope you find these resources helpful and they give you a direction to go in as you or someone you know navigates this new reality.

The SAGE test:
Is it normal aging or possible dementia?  If you want to test yourself or someone you suspect could have it, there is something called the SAGE test.  (Self Administered Gerocognitive Exam)  It takes less than 15 minutes to fully complete and don't worry if you miss a few.  Our neurologist was most concerned with the clock test which can be the first sign of a true cognitive decline.  If in this digital age, you don't know how to read an analog clock...LEARN.  Like now.  Please realize that the person affected will be scared, think of how you would feel if someone accused you of what many ignorant people callously refer to as "losing your marbles."  You would be defensive, resistant and scared of possible diagnosis.  You must approach this from a place of love.  Be kind, be patient and be empathetic to all of the emotions and resistance that may come with a person who feels cornered.

To learn more about the SAGE test, click here.

Make an appointment with a doctor as soon as possible!
If you suspect you or someone you love may be going through more than just a normal bout of age or hormone related forgetfulness and truly feel something is wrong, make an appointment with your family doctor right away.  It is helpful if you have the person complete the SAGE test first and bring it to the appointment.  If they brush off your concerns, you must insist on being referred to a neurologist for proper testing.  A family doctor is not trained to ask the right questions, they are not a specialist.  Your family doc doesn't care if you want a second opinion and if they do, then they do not have your best interest at heart and consider switching.  When it comes to health of any kind, be your own advocate!  No one else will!

Has there been an official diagnosis?  
You will be overwhelmed, scared and wondering where to go next.  I would recommend going to Alz.org which can give you an overview of what this diagnosis means.  They also have a great thing call Alzheimer's Navigator which can help you formulate a plan and answer the millions of questions you may have swirling in your head.  From working up a plan with your doctor to safety issues you will now have to consider to legal and financial planning to caregiver support, care options and what to expect of new daily routines, the Alzheimer's Navigator is an invaluable resource.  It can direct you  to local resources like caregiver support groups (which are imperative but often ignored) and home health care for mid to late stages.

The importance of help and empathy
As a caregiver, you will want to take on everything.  You will convince yourself you can handle it all but the fact is, you can't.  The sooner you accept that, the better.  Just because someone you love has dementia does not mean your life stops.  Living your own life is tough enough sometimes but helping someone else live theirs means there is not enough time in the day and something will suffer.  Too many caregivers exhaust themselves, their health suffers, they can resent the person they are caring for and yes, often times caregivers die long before the patient because they refused the amount of help they needed.

If you have family and friends who offer help, take it.  For as long as they offer it, accept it.  Also accept that some family and friends will not be able to emotionally handle the changes you and your loved one are going through and being around them will not be an option.  This does not mean they love the person any less!  They may have their own health issues like depression or anxiety that just make it difficult to be around them.  They may want to honor the person by remembering them as they were as the stages get more severe.  If they still offer to help in some way, give them some money and a grocery list to go shopping.  Allow them to bring over a home cooked meal from time to time giving them a list of the patients favorites.  Let them do yard work like pull weeds, mow the lawn, plant flowers, etc. If they want to contribute toward a cleaning service to come in every few weeks for a deep cleaning, let them.  Allow them to address Christmas and/or birthday cards.  If those traditions were important to the patient, they would likely be thrilled to know those things are still being done.  There are a myriad of ways people can help make your life a little easier and express their love and appreciation for the person who was diagnosed.

There will come a time that you will need more help than family and friends are able to provide.  There are expenses that come with home health care but there are also many programs available to help aid the financial burden.  If the person diagnosed is under retirement age and they are a spouse, you may want to check with your employer about options for enrolling in long term care insurance.  In most cases you do not have to wait for open enrollment to get that ball rolling.  A wonderful resource many families use for home health care is Home Instead Senior Care.  They will answer any questions you have and for those uncomfortable with leaving people with strangers, our local chapter was completely comfortable with us setting up a camera so family could check in.  A good health care place won't have an issue with any precautions you want to take to ensure the comfort and safety of your loved one.

Diet and exercise
You can do a search for Alzheimer's diet and exercise and find tons of articles about suggested foods that may help prevent the disease and many studies show moderate to intense exercise helps ward it off as well.  What many don't realize until there's been a diagnosis that diet and exercise is very important to possibly maintaining what cognitive function there is at that point.  The neurologist specifically told us to make sure Grandma was not eating fast/junk food and that she needed to exercise every day.  That was not followed.  The result was a dramatic decline so fast that even the doctor was surprised.  I firmly believe we could've gotten another 1-2 years with minimal decline had that been followed.  Obviously I can't know that for sure but when it is basically written down on a prescription pad as medicine for a diagnosis, to me, that needs to be followed as closely as you would medicine on a bottle.  Don't allow what happened on that front in our family, happen in yours.

"I don't want to go into a home."
This is the number one fear as soon as a patient hears the word dementia.  They think the family will throw them in a home and never see them again.  It is all very scary for them and paranoia is an early stage symptom you may need to address.  It is best to tour assisted living with dementia care programs while the patient is still able to give their opinion on what they did and didn't like about the place.  Assure them you are not looking to "dump them off" and run but as a responsible caregiver you must be prepared for the worst case scenario.  Tell them even if it's years down the road, discussing these things early in the diagnosis is imperative and you aren't making any kind of statement by wanting to tour these places.  If anything, it is a statement of your love for them and wanting them as empowered as possible to make decisions regarding their health.  It's very important that all of the family is on the same page with this because there is so much emotion involved it needs to be talked about in a practical way.  It will make an already difficult decision more tolerable if you all know you are coming out of a place of love not only for the patients best interest and the best care they can receive but also the health of the caregiver.

Good resources of comfort:

When grandma was first diagnosed, this book was recommended to our family and it has been invaluable. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease  It gives you a good idea of what to expect in each stage and how you can handle it.  Some things were handled in a similar manner with our situation and unfortunately some things weren't.  It is definitely one of the first resources I would turn to post diagnosis.

Where the Light Gets In: Losing My Mother Only to Find Her Again  This is a book I'm still in the middle of but I can tell you as a big fan of Kimberley Williams Paisley that sharing her story of her mom's dementia and her concern for her dad as caregiver has helped me feel less alone.  A book like this will pull at your heartstrings but help you realize your feelings and situations are common and make you feel less alone.

Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer's  I haven't read this yet but it's on my list.  You may recognize B. Smith from her appearances on The Dr. Oz Show and she is truly a sweetheart and your heart breaks for her.  She and her husband stress the importance of part of her treatment being a healthy diet (no sugar) and exercise and meditation.


I hope that this has given you a good place to start whether you are going through this with your own family or want to share with others who are going through it with their family.

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4 comments:

  1. God forbid if anyone comes here needing this guide but it's very important to share information with others because experience cannot be beat. We need a cure but in the mean time anyone facing this in their family should definitely get as much help up front as they can.

    ReplyDelete
  2. These are great resources, thank you for offering them.

    ReplyDelete
  3. You have provided us awesome resources. Thank you so much.

    ReplyDelete

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