Dementia – “Oh, What A Journey!”

When I first began my blog in January 2015 it was to try to help dementia caregivers.  At that time I had been a caregiver, in my home for 2 years, to my brother with dementia.

I followed and read blogs of caregivers.  I posted comments on their blogs trying to help them in some small way.  What I finally realized was that most caregivers post to release their anxiety.  They fail to reach out, as I did, to learn from the experience of other caregivers.  I also realized, if a subject you post is serious, few people wish to read your posts.  Others do not wish to listen to the challenges and problems you are going through in your life.

Today, I am going back to the subject of dementia.  Recently I connected with a person who is beginning the journey of caregiver.  A person, I so want to help, who is already struggling with the stress of being a caregiver.  I laid awake, in the middle of the night, for hours thinking about her and what she would encounter as a caregiver.

For any beginning caregiver out there who may find the time to read this: I am posting a list of challenges, emotions, sorrows, etc. that you will face on your dementia caregiver journey.  Perhaps this will help someone.

1.) You will never in your lifetime face a challenge as hard as being a caregiver to someone with dementia.

2.) You will deal with more stress than you have endured in your entire life.

3.) The love you have, for your loved one with dementia, will turn to hate.  Because the burden is too heavy to bear.

4.)  You will feel resentment and anger for a person who cannot help it, because they are journeying into the fog of dementia.  A person who will forget who you are.

5.)  You will have anger toward family members who will not help you in your journey as a caregiver.

6.)  It will amaze you and cause you grief and distress to see how society shuns a person with dementia.  Because those with dementia cannot function as normal human beings.

7.)  You find that you have to put your life on hold for another human being.  You have no life of your own anymore.

8.) Long before it gets to the point of considering harm to the person with dementia or yourself to end the misery: Find that support group, seek help from your doctor, preacher, or a close friend.  Believe me I have read many stories of those that were ready to end the dementia journey in a very drastic way.

9.)  Don’t let those in society who do not deal with being caregivers tell you: It’s your duty to finish the job you started as a caregiver.  You can do this, when you know you do not have what it takes to finish the journey.That you should never put someone you love in a nursing home.  That you should feel guilty about having negative thoughts about the person with dementia.  To have those thoughts is simply human nature.

10.)  Do not listen to judgments about you as a caregiver.  Especially  from those who never help you or have any idea what dementia entails.

11.)  Most states require a power of attorney, signed by the dementia patient before they become incapacitated and still understand what they are signing – To place them in memory care, assisted living, or a nursing home.  Seek the advice of a lawyer, who can draw up the necessary forms for you.

When my brother became angry, wandered away time after time, my husband became ill – I hired a lawyer to get Medicaid from DHS for long-term-care to place my brother in a nursing home.  My brother’s case was unique.  His business partner in another state had failed to steal a very small portion of his assets.  He was being penalized for owning a small portion of real estate.  Real estate owned under an unbreakable Joint Tenant Deed, with rights of survivorship.  After a 5 month battle with DHS, and $10,000 of our money, for the lawyer and penalties imposed, my husband and I obtained Medicaid for my brother.

The first nursing home worked for 10 months, but not well.  Constant phone calls, problems, and many meetings with staff.  The second nursing home we placed my brother in has been a God send.

There has still been stress even though my brother is in a nursing home.  He is presently in his one year reevaluation process.  Yes, every year the paperwork is done again to make sure the patient is eligible for another year of Medicaid and has not acquired any new assets for which you will be penalized.

But, at long last I think I can give most of my focus to my life and the health concerns of my husband and myself.



8 thoughts on “Dementia – “Oh, What A Journey!”

  1. As I’ve commented before, I simply cannot imagine how hard all this has been for you, and the toll it has taken. I hope your post gives courage and support to anyone starting out along this extremely difficult path of love. Best Wishes Scifi 🙂

  2. norcalmom says:

    I like the list. I am sure to read it multiple times. Especially the part of not listening to others who are not active in the patients care.

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