Waiting for Monday

Acupuncture does work for the type of dementia that my mom has going on inside her brain.  In the study, it stated that Acupuncture works well for Vascular Dementia, dementia that was brought on by unmanaged blood pressure, cholesterol and blood sugar.

My mom has been diagnosed with Alzheimer's, the catch all diagnosis for all forms of dementia with cognition issues.

My mom however, she doesn't forget, not like those who do have Alzheimer's.  She remembers everything; her trouble is finding the words to tell you what she remembered.  She gets frustrated.  Her blood pressure rises and hallucinations start.  My mom, she hallucinates, a lot.

Yesterday, the Acupuncture appeared to wear off and she was back to telling me about the big celebrations going on in our back yard.  In the morning, she looked at me and said, "You are an angel.  I can't believe it.  They showed me your wings... you are an angel!  Why didn't you tell me?  You are an angel... wow!  No wonder they keep telling me that they want you to join them."  She looked at me in wonder and amazement, her face was soft and relaxed.

I agreed with her.  I told her that I am an angel, a human angel that was sent to take care of her.  I also told her that they can want me to join them but I'm not ready to die, because when we die is the only time we can join her people.  My mom's belief that I am not of this world set us up with a very nice day... until of course I didn't have answers to her questions - she believes that I should know everything because I'm one of "them."

We went to the hair dresser and got our hair done.  We both needed it bad.  I had Brian take a before picture.  I tried to get my mom to frown and look sad in the before picture (see first picture in this post.)  Nope.  Not my Ma, she was still believing that I was an angel and she was happy ... she wouldn't stop smiling.

When we got home we had lunch and hung around in the yard.  My mom sat and watched whatever her hallucinations were showing her.  Later, she said to me, "they're burying your dad, he died.  Do you know that he's dead?"

Confused, I attempted to reason with my mom and tel her that my dad died 31 years ago (yesterday was the 31 year anniversary of his passing.)

"Nope.  He just died, they are burying him in the back yard."  She said to me with conviction in her voice.

Her obsession with the burial that she was witnessing in her mind caused her to pace.  Her blood pressure went up as she crossed the line into crazy land.   She paced through the house, going from window to window to see if she could see what was going on outside... what "they" were up to in the yard.  She insisted that she was watching them bury my dad and that Savita the Cat knew that a funeral was being performed in our yard.

"See her laying over there, she's so sad."  My mom said to me and my husband on 2 separate occasions.  She believed what she was seeing, it was real to her.  I will never get used to her hallucinations.  I do try to explain them to her because she wants to understand what they are doing and why.  I've had ceremonies to banish bitches and call an imaginary Dream Master, all in an attempt to divert my mom's attention to something else.  At times it works, other times not so much.  Acupuncture however, does the trick, it stops the insanity.

In an attempt to turn her focus from her hallucinations, I enticed her to come into the pool and help me clean it.  Her job was to use the hand held net thingy and pick the pine needles off the top of the water as the wind blew them into the pool.  I vacuumed.  My mom had a great time helping, she loved her new job.  Together we cleaned the pool and she stopped looking for the burial ceremony.  This morning she even said, "We had such a good time yesterday, I love my new job."

Once we were out of the pool and I went inside to prepare dinner, my mom sat on the deck and stared into the yard.  Eyes filling with tears, she began to witness her father's burial.  She thinks of death a lot, telling me that she has one angel wing and will get her second one soon.  She told me that she's going to haunt me when she dies.

I am waiting for Monday.  We see Dr. Barton in the afternoon for another Acupuncture treatment with another scheduled for Friday.  I'm looking forward to talking to my mom again.  I'm looking forward to watching a stupid movie with her early on Sunday mornings when everyone is still sleeping.  I'm looking forward to having time with my mom.  I'm looking forward to the freedom that Acupuncture gives my husband and me, freedom to leave the house for a few hours and know that everything is OK at home.

Today, Donna is coming to stay with Ma.  Brian and I are going to a reunion of my classmates from Grammar School.  I'll see the "kid" who told a nun to go fuck herself (he's not in my 1st grade class - not pictured.)

I'll see the first friends that I had made in school and some friends that I had made during my first 12 years of education.   I'm looking forward to seeing every one, it's been decades.

Tomorrow is Sunday and Amy is coming over to spend a few hours with Gram.  I love seeing Amy.  It's awesome to have her back in our lives again.  I missed her a lot.

With the weekend covered, it won't be long before Monday is here and my mom has Acupuncture again.  I'm waiting for Monday, but in the meantime, I'm happy and enjoying the peace that I'm creating in my life.

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.