A Cry For Help

Caring for a crazy person will make a person crazy if the Care Giver doesn't get a break away to swim in the pool of reality.

Emotions matter.  The Care Giver is leader and needs even emotions, happy emotions that the patient feels and mimics.  The same is true for unhappy emotions, stress, tears and nerves that are shot; all ingredients to form a perfect storm in the demented mind of a patient with Lewy Bodies Dementia.

The cure for the Care Giver?  Respite... breaks away to recharge.  Even a few hours does wonders for a Care Giver, a few hours that are often unavailable.

How can you help a Care Giver?  

First, I'd read up on Alzheimer's and understand what it is, educate yourselves.  Putting your head in the sand and thinking, "Oh, everything will work out, it's going to be OK." and then doing NOTHING will not make everything work out and be OK.  

If you really care about the person with the mental illness and the Care Giver, you will educate yourself so that you can do something, something that will help. After all, we all want to help but just don't know how.

A very good book is "The 36-Hour Day" which describes everything and helps the reader to understand how regular logic doesn't work.  It's why I go along with Ma's hallucinations... why I write love letters to heaven, why I have banishing rituals, why I call Dream Master... read the book and you will understand why I am caring for her.  Believe it or not, being home with help is the best thing that we can do for our mom.

The purpose of this post is to tell my family and friends how they can help us.  I need help, this is my cry for help.  Please, help me.  I cannot do this alone, 24 x 7, 365 days a year.  I've said it before, I'll say it again, Care Giving without any help is a terrible prison sentence where my only crime is caring about my mother.

Once you are educated about the debilitating mental disease of Alzheimer's it's easier to face.  The potential is there for all of us to develop the crazy gene, a gene that my mom often worried about for herself and her children.  Now, after being my mom's Care Giver, do I understand my mom's fear about the crazy gene... it's pretty darn crazy!  So much so that it's beginning to drive me completely mad.  Care giving with out any time off is torturous for one's soul, sucking up life like weeds in a garden.

My mom's condition makes her believe that she's capable of living her life as she once did, moving about freely, shopping and making sound decisions.  She hallucinates and tends to hallucinate a lot more when she's bored or upset.

Upsets in her world trigger behaviors that are annoying, behaviors that are easy to manage when the Carer is rested.   I am not rested and I fear that I am becoming a shitty Care Giver.  I lose my patience more easily and have a much more difficult time controlling my sad emotions.  I cry a lot.

Things that upset my mom are numerous, but the one thing that upsets her the most, making care giving 10 times more difficult, is when her kids don't call or visit.  She wants her family around her and feels abandoned.   She lashes out at me, the Care Giver when her family doesn't visit, often she blames me for their lack of attention.  It's always my fault, even when it isn't.  It's hard on me.  I don't know what to say.  Do you care?  I don't have the answers to Ma's questions.

I believe that my mom roams around the yard looking for her family.  I've noticed that she hallucinates a lot more when she misses her family.  She is always looking for someone and it doesn't matter if they are dead or alive, she will look.  She's been asking to "go home" for weeks, a question that she stopped asking for awhile when she was happy, feeling safe and secure.  Now, she's feeling insecure and unhappy because the only one she sees is me.  She's sick of me... actually, she's sick of all 3 of me.

I need help, physical help.  I need to know that my family hasn't abandoned me completely.  Please, please help me.

The plan is to put my mom in a nursing home.  I just can't do it anymore without help, physical and financial help is desperately needed.  I'm in a catch-22 situation.  I need someone to come so that I can find more respite services.  I need time to research nursing homes, visiting them during the day and night to see how the patients are treated.  I need a job to pay for all of this but can't get a job because I can't leave my mom alone.

My mom has no money, just her monthly Social Security which is $75 too much for her to receive free healthcare from the state of Massachusetts.  I've been supporting my mom since 1998.  I always had a good job and could afford caring for her, but now I need my family to help.  I need time away so that I can get a job.  I'm capable of making a lot of money; money that would help me to help myself.  I'm stuck in a ditch.

I sound like a broken record, skipping over the scratch in my mental vinyl every time that I think about how I can get out of this slow death sentence which is fueled by stress.

Here's my list of ideas as to how you can help me to get my life back ...

1.)  Call Ma, make it a regular call, schedule it into your busy days.  Make it the same day and time every week.  Regularity is very important with the demented mind.

2.) Visit.  Make the visits regular visits, even if it's one day a month, make it the same day every month so that Ma has something to look forward to; she looks forward to family visits.  The family visits make her very happy and it makes it easier for me to take care of her.

3.)  Buy me respite.  If you can't visit or call for whatever reason, I understand it - well, sort of.  Confronting the illness something that you need to deal with on your own; Our family has Alzheimer's, not just Ma... when one person has it, we all have it.  A great way to get over the guilt of not helping me is to buy me some time, pay for someone to come and take the burden off my shoulders for a few hours.  It will help me to help myself and you will feel good because you are taking on some of the responsibility.  Ma is all of our responsibility if she's living here with me or in a home.

4.)  Send cards or short letters.  Send "Fun Mail."  Ma loves getting mail, who doesn't?!  Let her know that you are thinking of her.  She especially loved it when Donna mailed her jewelry made from inexpensive plastic beads.  She wears these necklaces all the time, sometimes all at the same time.

5.)  Send her pictures.  Put together a memory book of better times, pictures that will trigger happy memories.  Better yet, if you can, make the book, bring it to her and then look at it with her.  The joy that you will bring her will make you feel so good about yourself.  It is a way to get over the guilt of not knowing what to do.

6.)  Take her to the hair dresser or shopping.  She loves going out.  Take her for a drive.

7.)  Swimming - my mom loves to swim.  If you have a pool, invite her over for a few hours.  I'll even pack a lunch for her and everyone else at your house.  Mom is a lot of fun when she's happy.  She'll be happy when she sees you.  If you don't have a pool, come to my house.  I'll make lunch for everyone and then I'll use the time to recharge.  Recharging is important for being a good carer.

8.)  Play music with her and sing-a-long.

9.)  Most important - spend time with her, visit with her and hug her a lot.  Hugs help her to feel secure after you've left and it keeps her from running away, roaming the streets looking for you.  Wandering behaviors are super stressful for me because I fear that she'll get hurt.