Advice From a Care Giver to Care Givers

The day after my mom's birthday party in Maine gave us a very rough landing where my mom is concerned.  She was agitated from the moment she woke up.  Agitation that lasted nearly the entire day.

I sucked it up.  I reacted with sugar sweetness; a tone of voice that I purposefully kept soft and even.  I was able to remain calm in my mom's crazy storm.  My family, just seeing them at my mom's party, helped relieve all the stress that I had been carrying with the burdens that are part of my life these days.

My family, they are my only true friends; that's the lesson my dad taught over and over again.  I took him literally, I believed him.  Family is important, every person in a family has a role to play in each others lives.  It's up to us to decide if we want to ride the family roller coaster of love.  It's got it's ups and downs, just like any relationship.

Siblings.  They can make us mad but when push comes to shove, they are there for us.  I know.  I was one of those bitter Care Givers when it came to my family.  I didn't understand why I had been abandoned.  I didn't get why they were turning their backs; no one seemed to care when I was feeling as though I was in way over my head with this Care Giving nightmare.

I did cry a bunch.  I am sure I made my husband nuts because he didn't know how to fix the problem.  He's an only child and never had to face a battle with a sibling.  It can be ugly.  I was upset but I also missed everyone.  I was mad that I was missing the fun that I imagined everyone was having with out me.  I was experiencing demented thinking.

Dementia related illnesses are freaking scary.  I understand that more than most; "Hey, look at the wedding!" My mom will say out of the blue because in her mind, she's witnessing a wedding in our back yard.  There is no rhyme or reason with dementia; folks with dementia live in a different world.

I know how scary it must be for my family to see my mom when she is hallucinating.   They see dramatic changes in her mental health where I don't, it's a gradual change for me because I see her every day.  My goal was to help my mom to be more present so that my family wouldn't be so afraid to be near her.

This past weekend, a dream came true for me; my family got together and I could take pictures.  Lots of pictures and video that we can look at one day and remember how important each of us are to the other.  I love my family.  I'm grateful for family love because it gets me through the tough days with my mom.  I know I'm not alone.  My family is just a phone call away.

I love my sisters.  I love my brother.  I love my nephews, all of them, especially the baby.  He is funny as all get out and he's not even 2 yet.  He's a huge flirt, a child prodigy for flirting with pretty women.  He's got moves that made us all laugh out loud.

Today I feel renewed.  Ma is better since I told her that she will have a say with the home she eventually lives in.  She was worried that I was going to have her committed and put into a state run facility, a place that she didn't chose herself.    My mom wants to move.  She wants her own place.

I'm hoping that Acupuncture will allow her to live in an Assisted Living Apartment or Group Home, a place where she can feel that she has control of her life.  My mom will have friends where she lives and more people to help her.  I also believe that once my mom moves, she'll enjoy seeing me again.

My family is here for me.  They are now my emotional support system during the hardest times of our lives.  I opened my heart and let go of MY issues because they were akin to demented thinking.  My family, they have not forgotten about me, for this I am forever grateful.  

I do have advice for other Care Givers who have been estranged from their families over caring for a parent.  Don't give up on your family.  They do love you and your ailing parent, they do care... they just don't know what to do to help.

It's scary as all get out to see a parent insane with dementia.  We see the ailing parent day in and day out, the change we experience is gradual.  For our families, the more they stay away the harder it is for them to face the impending demise of our loved one.

My advice is do not judge.  Allow your family to help you.  Listen to their ideas.  Accept their help.  Empower your siblings by listening because they are detached from the situation and usually can think more clearly.

Communicate.  Talk.  Listen.  I stopped talking and listened.  I heard them, they heard me and now we are all working together.  Caring for a parent with dementia is not something someone should do alone.  It's horrible.  It will make you feel sick.  You will have resentments that are stupid and don't serve any good that you are doing.  It will make the patient agitated.

My advice... just let it all go and allow folks to help you.  Relinquish control and share the burden because your good health depends on it.