Dementia. You suck.

Stages of Dementia. Poor judgment, memory deficit, irritability, apathy, indifference, pacing, restlessness, and agitation may signal a patient has developed dementia.

07/07/2018 First things first. There is nothing funny in this post, it is not my normal happy go lucky, vodka induced island life. It’s just freaking real and I am having a hard time grasping that it’s my families (PJ, Missy and us and our kids) new reality.

I was going to write about grand-parenting or the inability to actually be allowed to do it, but have changed my mind. It’s undeniable that we will never have the joy of getting to know our grand-children because their mother wants it that way and our son can’t/won’t speak up. The mother keeps them close to her, like her little dolls, her play things. She makes the 12 year old sandwiches. The 15 year old has no chores because she doesn’t like to do them.  Everything we do or say elicits an eye-roll from one of the girls. But, I’ll say no more, heartbreaking as it is. I have issues that are bigger so I’ve put that one aside.

My parents are not doing well. They are no longer the people that I knew all of my life. I often ask myself, “who are these people?” I knew this would happen sooner or later. I just always counted on the “later” aspect. Well. It’s now later.

Mom and Dad’s Grandfather clock stopped working, Apparently they are unable to tell time on any of the other 5 clocks in their home. Missy took an old clock of hers and hung it on “Big Ben;” Ben has now been properly fixed.

My sister Missy, who is 13 years younger than me and her husband Mark, are the most incredible people I’ve ever met. {They will be referred to as M and M.} However, I worry about them. They previously lived about 90 minutes one way from the parents. M or M was running down once, maybe twice a week. We all knew it was time the parents give up their condo and move into an apartment in a retirement home, preferably close to M&M. They moved and they hate it there, it’s not Asbury, where they used to live. Asbury still holds good memories, memories of Dad driving and them having friends and doing fun things and that’s pretty much all they have to cling to right now. The memories they can pull out of their brains are where they wish they still were on this path of life. They remember nothing recent, although they say they do. Bedford, where they live is quite nice with excellent food. That is one complaint Dad had about Asbury, food was cafeteria food. This is not.

Mom has had a lump on her abdomen for 3 years. The docs said it was a hernia. Lately, it started to hurt so M took her to the Dr. Well, it’s no hernia. It’s a squamous cell cancer tumor in her abdomen. They have no clue why it’s there as it usually always presents itself as skin cancer. The lump is growing. They wanted to do surgery but Mom turns 93 Aug 1st. The surgery will kill her before the cancer does, it’s a massive recovery and she is very very weak. They chose to do immune therapy, hoping to shrink the tumor. She had one treatment and because she is incapable of using her nebulizer and meds consistently, she had a severe asthma attack which she was hospitalized for. Guess what they gave her? The same meds she is to take 2 times a day. Once discharged they hired a nurse to come twice a day to make sure they got dressed, she did her meds and they went to eat breakfast and dinner. Dad hated the nurse coming. He also refuses to allow Mom to use a walker. He thinks she looks stupid and lazy using it. He needs one also.

I decided I needed to go visit. I messaged Trace and said I wanted him to go also, it’s been a long time (years) since he has seen them. Chance was there in January. I flew to Baltimore on Friday, got there at midnight, made my way to the rental car place, rented my car, set my GPS and started driving to M and M’s house, 40 some minutes away. I got there by 2. Mark was sleeping on the chair, M heard me and got up. We chatted a bit and both went to bed.

I slept like the dead until 9 AM. When I got up Miss had already gone to the parents apartment. When she arrived she noticed the side of Mom’s face was drooping and she was slurring. Dad, sadly did not notice. M called M and told him what was going on and she was coming to get her cell and me. When they got there, I went out to greet Mom and she seemed fine, weak but talking OK. Then it happened again, another TIA. M and I looked at each other and said let’s go.

We took Mom to the hospital and checked her in. After a few hours they admitted her for observation to a room. Miss and I were with her all day long. She didn’t know what she was there for. They did a brain MRI and some heart tests. The brain MRI confirmed that she did have two TIA‘s. Her heart was OK, it showed the normal signs for the heart of a 92+ year old woman.

Dad sitting at the hospital with Mom. Quite a poignant photo.

She seemed very weak, couldn’t really feed herself, couldn’t hold the tube of the nebulizer in for 2 min let alone 10, I had to hold it for her. She could not manage to go to the bathroom alone. When I helped her pee for the first time in my life I thought back to the role reversal and her training me to use the toilet. Pretty potent shit.

She stayed on the hospital observation floor most of the time then they moved her to another floor for the last day or two. On Tuesday morning I drove to BWI @ 5 AM to pick Trace up at 6. He had flown all night to get here. We went back to M&M’s and they were both waiting for Trace. Miss was going to work that day so Trace and I went and got Dad and took him to see Nonie at the hospital.

Those of you who do not know my Mom, she was and still is a smart ass and a fireball, a red headed Irish woman. Crazy as shit but a good Mother. She has not lost the “mouth” part of her personality. (Wonder where I get it from? Look no further).

Dad, Trace and I walked in to her room. At first she didn’t recognize Trace then she said, “It’s my little shit head.” Trace smiled and laughed. She used to call him turd knocker. Close. We sat with her, I ordered her lunch and helped her eat. She was turning up her nose at everything. When she would say she wanted to go home I would remind her what the doctors said and she would give me the finger. She told me to tell them to shove it. Trace was all bug eyed, he never heard her talk like that. Off the wall. But when the nurses came she was freaking Pollyanna. I’ve not seen her like this, nor have M&M. We think it’s a product of the TIA‘s. I told her she needed to regain some strength. She asked if I wanted her to move furniture for me. She also said she could take Trace & I. WTH? Dad agreed with us (surprise, lately we do nothing right). He told her it was for her own good and that she needed to get stronger. She became a fan of Sabra Hummus (I was buying it in the cafeteria) and pretzels but she could not pick a pretzel up off of the plate to dip it. I had to dip it and hand it to her. Another damn role reversal. Later that day Dad came for dinner at M & M’s.

Dad at dinner with the two jail escapees, Missy and Trace.

Trace, Dad and I

On July 3rd they decided to move her to a Rehab facility. I’m sorry, this song was constantly on my mind. And yes, it’s now playing. RIP Amy. The rehab facility is # 2 out of 20 in the area and it’s in the same complex where they currently live. Score for us!

Mark, my hero of a brother in law, walking Mom down the hall. She is wearing her favorite sweater, one PJ got her.

Welllllll, preparing for the rehab move went like shit. She was refusing to go, said people thought she was an idiot. She yelled at Dad to do something and stick up for her. Don’t let these girls do this to me. THESE GIRLS??? Vic, you always took care of me, take care of me now. Why aren’t you saying anything Vic? I would say, Mom, it’s NOT up to Dad. It’s what the Doctor says. She yelled. “they can shove it up their a$$.” It was OMG moments, occurring every few seconds. My brain was leaking from the assault.

Finally on the 4th of July, she was moved and her flame seems to have not been extinguished. Since she is in Rehab they will not continue the immune therapy cancer meds. They said when she gets out of Rehab, they will need to re-evaluate. Freaking medical malpractice in the US is over the top. She is adamant she is not staying. She was continuing to call M&M all day saying come get me now. I’ll have you arrested. M&M’s son and wife came for 4th of July dinner. It was so awesome to see them! Mark and Eric (nephew) went to get Dad to take him from rehab back to his apartment. He let loose on them, was verbally abusive, as was Mom. They returned before dinner and my sister was brought to tears from the story. They got in a quick game of corn hole before dinner.

Trace and Sofie. Sofie has also been amazing, she has her doctorate in audiology and has been fine tuning Mom’s hearing aids.

Missy and Eric, my nephew.

My baby, Trace. I was so proud of him and how he handled the uncomfortable situations we were all thrown in to.

She may be 13 years younger than I am but she acts like me and that makes me smile.

We sat down and had a fabulous meal, ribs cooked á la Sofie.

The grill master

Just as we were finishing our meal the rehab center called and said Mom was wigging out, we needed to come. So M and I went over. Mom was sitting at the registration desk and as soon as she saw us, anger formed in her eyes. She was ready to do battle with her daughters. We took her into an unoccupied room and had a chat with her. She said she would punch us both, she said she called the police and they said nobody could hold her against her will. She then said she was going to throw a phone through a window and then shoot herself. I reassured her if she attempted any of those things they would have her strapped down to a gurney and she would not be happy. She glared at me. She yelled, she cried, she was furious. Miss and I got her calmed down, so we thought. We do believe she slept through the night.

Mom called the next morning demanding M come get her. I told my sister, no, do not go now. Wait. M & M have a tendency to go immediately when called, which is admirable on their parts but does not allow them any quality of life. Mom is OK, she is in a facility, she can’t get out. They watch over her. M & M need to step back.

M & M had plans Thursday night and Trace and I were returning my rental car and spending the night in a hotel near the airport. We all said good bye to the parents at the Rehab center. Mom seemed in an OK mood. Mark got Dad back to his apartment.

M & M were getting ready to leave and I was packing. The phone rang, it was Dad screaming at Mark. Mark handed the phone to me and Dad was yelling at me. I asked him what he wanted. He said why was he there? I told him he was at his apartment and he said that’s just great. I said, That’s good, night Dad. M & M left and the phone rang, Dad again. I answered Hi Dad, how are you. Did you have a good dinner? He said, “Where the hell is everybody? I’m here alone and I don’t know what to do.” I said, have some ice cream and watch some TV. I mean, it’s what he’s done every night for the last 10 years. He yelled, “Fine, this is just fine.” I said, Great, have a good night and hung up. I have no clue how many more times he called that night because Trace and I left.

Family portrait, Missy closed her eyes, other shots were blurry.

PJ tried to call Mom and they told him they took the phone out of her room because she called 911 FOUR TIMES! Miss said the phone is back in the room but the list of phone numbers are gone. The nurses can contact M & M if there is a medical emergency.

I’m spent. Wasted. Not sure what to think or feel. I am guilty to the core because M & M are there and I am not. I see all this as a beginning to the end. When they moved in to Bedford it was stated Independent Living may happen as long as both of them are living there. She is no longer there so we believe they will be moved to assisted living, which will put my Dad over the edge. He’s a very proud, macho Italian. 97 or not, he can’t grasp the fact he is no longer in charge.

My brother PJ is in Williamsport and does what he can to help. He will go down if they have to move to assisted living and drove to Asbury to help them move to where they now are. He and Devon (his daughter) plan to go down for the big anniversary/birthday weekend. 70 years married July 31 and Mom turns 93 August 1st. I don’t want people to think PJ does not help, he does more than I do and is always ready to be there when M&M need him.

As my islander friend says: Once a man. Twice a child. Never has this been more evident.

I came across 55 videos done by Joey Daley about his Mother, Molly Daley. They started Molly’s Movement. If you or anyone you know suffers from this dreaded disease, watch these videos. Molly has recently passed from Lewy Body Dementia, she was 67. There is also a FB page called Mother and Son’s journey through dementia.

Please encourage people to talk about this. The videos made me cry my eyes out but I learned so much. The posts on the FB page are gripping, sometimes precisely what we are experiencing. It’s always good to know you are not alone, that so many others suffer. Some with no family to support them or to be there in a time of need.

Another good read is; https://goodmenproject.com/families/mollys-movement-a-mother-and-son-story-worth-following-dg/

Thank you for reading along. Dementia is a horrible disease. I am fortunate that my parents both made it to their 90’s before this struck and took their minds.

 

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12 thoughts on “Dementia. You suck.

  1. My father suffered from dementia and it eventually took him. It was heart-wrenching, and took its toll on my mother (his primary care giver) and my family.

    I wish the best for you in this amazingly difficult struggle.

  2. David Boyd says:

    Deb,

    I’m so sorry to hear about your parents!!! This is heartbreaking. My father is starting to show some small signs of memory loss, so I’m also counting on the “later”, too, but am realizing it’s probably going to happen sooner than I can imagine.

    I need to run to the store, but I just wanted to say hi – and that I thought about you last weekend. We took a vacation to the Oregon coast. On the way we stopped in Astoria and I took a picture for you…

    The Goonies house! Unfortunately you can’t get close to it anymore, but I wanted to do the Truffle Shuffle for you.

    Squeeze

    >

  3. Skip says:

    Hay Deb, So sorry to hear about the problems during your visit to the mainland. I think you are doing exactly what you should right now; venting to your friends. You seem to have a lot of people out there that care very much about you. And, it makes us all feel good when you lean on our shoulder and use our ear. Both of my parents are gone and I have no brothers or sisters, so I really can’t imagine. But I do know that the power of positive thinking works wonders, also helps to stay busy. So, thanks for the newsletter — even this one. And since I’m one of your friends I want you to know that I’m having an ice cold bottle of Budweiser right now “just for You”!! Hope that brought a smile to your face. Now, let me know when you have a nice glass of wine for me. . . . . . .

  4. Franklin S. says:

    Hello,
    Just went through a similar scenerio with my mother. Seems you have taken best steps educating yourself you can and are not alone handling this which is important. That doesn’t necessarily make it easier but hopefully more manageable. It’s hard to accepting such changes in your parents and the outrageous behaviors that result. It hurts you and you hurt for them. But their time is likely short now, try and cherish the good moments that may still come.

    • Thank you, not an easy thing to go through. I only hope and pray they find a cure so that my children don’t have to go through this as well with me.

  5. Walt K says:

    Deb, my heart weeps for you and the rest of the family. Both my mom and gram had dementia. I will keep you in my prayers, stay strong as I know you are.

  6. Rosemarie says:

    Good Morning, As always I found your posts most interesting & sad. I totally understand where you are coming from as I recall my mother’s slow decline before she passed. Following in her footsteps is one of my biggest fears. I hate the thought of putting my children in the same situation as you described so well. In my mother’s case she didn’t know me for years before she passed as 92. I won’t go into the details of her illness & behavior but it wasn’t pleasant. Like you I had already retired to the island & my daughter took over the care of my mother seeing that she was moved from home to a Sr. Residence where she was finally kicked out of, to a private residence where she lived for several years & received excellent care, on to another one, & finally to a nursing home until she passed. Having both your parents in this situation makes it doubly hard for M & M, you, & your entire family. Just wanted to send a little support. Its hard to age, & harder to watch those we love slowly slip away. Hang in there…. Blessings, Rosemarie Sent from my iPad

    >

  7. Timothy Selleck says:

    Sorry to get the news of your parents decline. I have seen family members and others going through dementia/Alzheimer’s including my father and it is a horrible experience. You and your family members are doing your best! It makes the good times seem even better. Peace be with you all!

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