It’s not that hard it’s not that easy

Posted on 30 January 2012 by Sarah

Last week my aunt called me to tell me all the horrible things she witnessed at my mom’s facility. She used ‘the colored girl’ while telling me details. My mom’s bathroom isn’t as clean as it should be. Hair, feces, pee, sticky floor. The drain in the shower also is nasty. Also, the showers. Once a week people.

Can you imagine showering once a week? She cries when she looks in the mirror, her hair is flat and greasy.

I visited today after mentioning all these complaints to the director of the facility and she nodded and agreed. I was very happy what I saw. My mom’s hair was done! She also was clean. I know she gets her weekly shower on Saturday nights but maybe they changed that to today. She didn’t smell. She looked good. My mom looked really nice with her hair done. The bathroom wasn’t perfect but it was better, as I knelt in front of the cabinet putting the adult diapers away. I noticed the drain in the shower looked fab.

She told me about George. ‘This nice man’ she kept calling him. As far as I can gather he looks after her and ‘takes care of me’. It’s cute. She was sitting next to him as I greeted her in the hallway. We sat in her room for over an hour and I cried. I miss her and I hate it that this has happened to her.

But she looked good and things had been improved since I called. Her toenails need to be cut.

I called my aunt after speaking with my grandmother for awhile. My aunt was happy to hear about the changes and her hair and cleanliness of her.

I called my sister in my relatively happiness to explain what had happened. My sister said she gave her a shower because she stunk yesterday and her hair was greasy so she did her hair when she was done with the shower.

Oh.

There is a white dried stain on her bedspread. Her glasses had a blue string hanging from them. I left it there at first. I had noticed some people had names on their glasses with a noticeable sticker on the arm. I wondered if someone there had put this blue piece of string on the glasses hing so they know it’s mom’s.

I looked at her glasses and removed the piece of string. It was just that. A piece of string hanging from her glasses for no reason why.

I have so many doubts and regrets.

We can never win

Posted on 11 December 2011 by Sarah

I visited my mother in the facility we had chosen for her. The drive there was full of discoveries I’m sure I’ll tire of soon. She sat in the dining room when I arrived. A group of women were playing dice. She smile and made a noise of glee. The facilitator told me they would watch the game later I said okay as I grabbed my mothers hand and went towards her room. I looked at her and she was crying. The tears flowed freely and often while I hugged her and tried to change the subject. She said she misses us.

I showed her this photo of Nova which made her laugh hard. I told her I’d bring her some pictures of the kitties and Pip. Most of the time there was silence. I felt overwhelmed with exhaustion even though I knew it was a trick for me to escape being there. Her tissues were missing. Her bathroom appeared messy. We took a walk down the hallway. We came around to the game and sat down. They ate popcorn and drank soda. Some were into the game. I felt sad and rested my arm around my mom’s shoulders, I didn’t really want to leave. I had mom sit back down. She got up with me to leave. I couldn’t really say the words. Goodbye was too harsh. So I left her there not looking back. It hurt me so much. I went back to her room. Tears while I quietly closed the door.

It was scary and sad to know that there was no way to go back to the home I’d known

Posted on 9 December 2011 by Sarah

There was this look my mother gave me yesterday in the place that is now her home. She looked to me to laugh or be silly. I did a lot of crying yesterday. Saying goodbye to the adult day care facilitators broke my heart. Driving her to the memory unit, I cried all the way. Despite all the sadness she was fine. We tried to make her room as close to her bedroom as possible. Hanging her bird clock. Photos in the right spots. She said she was tired and got into her pajamas. We hugged her goodbye. I cried the whole way home. She was fine with us leaving her there and that makes it good and sad because she is so accepting. I spent today finding her belongings here and there. Her empty bedroom is so strange. I’ve never been without my mother in this house. This house will change and will no longer mean Mumma and home.

the motion of the earth can unquestionably produce the impression that the entire universe is rotating

Posted on 30 November 2011 by Sarah

I cannot say I have felt too emotionally torn. The big shock came on Tuesday of last week after I texted my sister and she made the decision. I need to have everyone on the same page. I don’t want to be THE 1 making this big of a decision. I need to have validation I am doing the right thing. I felt really alone. I felt like I was the only one in the universe and I really wanted someone to hold my hand and tell me it’s time even though several have said this I needed to hear those words and listen to the words. I kinda felt relieved to have an end actually there within grasp in sight. Really right there. I can see it. Monday I made the phone call I’ve thought about for nearly eight years. I never thought I would actually HAVE to do it. I always hoped someone else would make the call on a mutual decision my entire family (the tiny family I do have) agreed to. I arrive home around 9 and talked myself through it. “I’m grabbing the folder with the documents of information. Grab a pen to write down any additional thoughts. Place the phone on the table. Press speakerphone dial the numbers ___ – ___ – ____ ”

And said the words – ‘I am ready to place my mother at (memory care assisted living facility).’

Midnight suduction

Posted on 1 November 2011 by Sarah

Today has been such a mind fuck. There isn’t another way to describe it. First it’s balmy outside, well almost…. This is screwy since it’s November fucking first. For some reason the last few weeks mom has been so lucid it’s bizarre. Calling things by their proper names, forming sentences, happy, laughing. It’s all a big mind fuck since it won’t last and she isn’t supposed to get better it’s all down hill. I went to my caregiver group where I cried which embarrasses me. I was actually exhausted driving home from the meeting. So many questions and what ifs there are the several ladies in the same boat wondering if we are doing the right thing or choosing the right place. I have kinda made my decision that I want her to go to this one place close by. Especially after hearing someone talk it up in the meeting this morning. The facilitator I love so much. She is so dear to me and all the group members. And I just feel so loved by all when we talk about what we’re going through. It just hurts so much. I hate having to think of my mother going to a place like a nursing home. This disease is not fair. I guess it ended up being a big pep talk. I spoke up a few times and wondered about if someone’s loved one progresses rapidly once they place them. Some agreed some didn’t. I felt so sad. The facilitator whom I love, began to speak of my mother and would she want me to suffer like this and push myself to these limits? No. But she’s not my mom anymore. So why am I taking care of her – she’s like a stranger. A stranger but yet there are those tiny glimpses of her that are familiar. But they go away so quickly. I guess I know the stranger better.

“everything is so nice.” she just came in the kitchen to tell me this and I have no idea what she is TALKING about. I am guessing she means her clean clothes? She hasn’t ever said that before. I don’t understand why she would say such a thing. It’s not my mother – but she’s being so sincere. Which makes it so much worse.

Someone says she’s so compliant and then I wonder well what’s wrong with me that I cannot take care of her. Is it really dementia they once said? Ugh…. I GUESS?? All this is fucking up my head today. I saw the admissions director for the place where my mom’s friend died last week on the way upstairs to the caregiver meeting. She called later in the day to inform me the check I wrote to hold her place in line was declined. Then she asked again why I didn’t want to place my mother yet. I don’t know. I guess I’m just not ready. I told her about the lucidness and I know it won’t last. We’re still looking at facilities, and making decisions. I couldn’t think of anything else to tell her. As I sit here thinking I wonder if everything I’m deciding about is right. Problems with this place – once mom is out of money she’d have to move out or apply for funding through the state which isn’t a guarantee she’d get. It’s far away. Not convenient to anyone. There doesn’t appear to be a program but I guess it’s better than some other places. So I need to write another check to cash – I am confused why they would cash it now.

We are so broke. The person I share my bed with’s car has broken and needs repairs that may cost up to three thousand or more. My car needs an oil change hardly anything to worry about.

Since mom has taken a turn for the worst especially when there is a large smudge of poop in between her butt cheeks frequently I have never felt more ready than I do to have children. This is the most bizarre thing. My ovaries are requesting attention or wondering why they are still sitting there doing the usual. I haven’t looked into anything in regards to this but I feel almost a desperation.

Pip keeps peeing while sleeping – what does that mean? It happened today while she was on the gold chair. a big puddle. Then more on the floor while she cleaned her fur from sitting in it in the gold chair. she gets fixed next week. The vet said she’d take a look at the bladder to make sure things were ok.

I want a membership to costco but that costs fifty dollars to one hundred. We already are addicted to Sam’s club (hate) and Amazon prime (love). Their quality is much better there and I’m anxious to see their organic products.

I haven’t eaten a single healthy thing for many many weeks. I can hardly get my pants buttoned. It feels like just last week I was making shortbread candy bars and starting my demise into the bermuda triangle of holidays – halloween, thanksgiving, xmas. Here I am a year later not sure of how I got here but regardless I’m back up one hundred plus pounds. I cannot have anything in my life to complicate matters.

I tried to volunteer as a webmaster for a art program and one meeting with the group and I was pumped but I had to cancel the next meeting. I could not bring myself to go.

The Christmas music starts at 11PM tonight on my most favorite music channel on music choice – Sounds of the Season. I am listening to the last of Witch doctor, Gothic Girl, Monster Mash, Poltergeist theme, The Shape Stalks, Attack of the Fifty Foot Woman, oh so many others. Vampires by Christopher Lee is my favorite. I heard it last year for the very first time. It didn’t disappoint this year.

Today I ate cookies, chocolate pop tarts, Wendy’s cheeseburger, fries, and a medium (huge) coke. It all tasted weird to me so I gulped down some soda but threw away a few fries after they tasted bitter. All bad.

Another major point my beloved caregiver group facilitator whom I love discussed is the fact of health problems and issues. She has high blood pressure stemming from many years ago while she was in a very stressful situation. I always allow myself to say – yea well I’m thirty whatever and i’m young and I’m inconvincible. not true. my ovaries aren’t going to stay fruitful and ripe forever. this scares me. I know my mom wouldn’t want me to lose my opportunity to have a baby because of her.

Plagued by bloody noses I now have a sinus problem that is giving me terrible headaches. This doesn’t have anything to do with my sore jaw from clinching my teeth.

When I laid down for a nap today I immediately fell asleep even though my stomach hurt. Car problems, picking up, driving, picking up food, dropping off people, small short rest. I’m not drinking enough water either.

I bought prune juice, cranberry juice, cinnamon raisin bagels, half n half, organic half gallon of milk, and two containers of center cut bacon (so damn fucking good), a dozen organic eggs. So I’ll be set for breakfast for this week. Bacon, egg, cheese bagel sandwiches my so very favorite breakfast. Paired with a chocolate frosted honeymooner donut. What more could someone who can’t be bothered about their health ask for? Only that typing what I just typed makes me superstitious and I do care, I’m afraid not to.

For the first day of November I cried, became surprized once again at the darkness of morning and felt sad when I saw the Christmas trees go up this morning.

Leave your body and soul at the door

Posted on 28 October 2011 by Sarah

I’m getting tired of myself typing about alzheimer disease and my mother but it’s such a major part of my life right now. Today I dealt with a phone call from the assisted living facility again speaking of a newly open room. Heartbreaking because of the recent death of my friend from the caregiver’s group, that’s the room now open. I called back to say not yet. And I don’t know if it’s the right thing TO say. Then I think of all the what ifs. And what thens. Then I found a long coarse piece of fur belonging to Meg’s tail and I haven’t recovered. MissUmyblackdog

When the impossible arrived

Posted on 12 October 2011 by Sarah

The ten days I had without mom went by quickly as I knew they would.

The first obstacle involved my aunt who found the respite care puzzling and didn’t quite understand why or maybe worried in general. I was bothered by this.

But we went away for a night because we could without worry. I had forgotten.

A phone call from the respite care nurse mentioned a near fainting spell. I feared she might have to come home but this was not the case. Unseasonable warm temperatures in the adult day center kitchen was to blame.

There was one bathroom accident but didn’t sound bad.

Luckily my sister picked up mom an packed her up. Mom stayed at my sisters for awhile. Hugging my mom when she arrived home she stunk like a nursing home resident. Unwashed, hair greasy, even a little poopy. Her breath was terrible as if she hadn’t brushed her teeth for ten days. She seemed a little weak and shaky. She went to bed before ten.

Yesterday we began cleaning and readying for a visitor. It was after one and I went into moms room to see if she was ready to get up. The smell hit me and I stepped back genuinely terrified. The smell was wretched and vile. I knew that smell: feces urine nursing home.

I started to cry. I was so scared to go into the room. I was afraid of what I’d see. It took me nearly another hour before I could gather up the courage to get her up.

Her entire body was covered with urine. The sheets were soaked. I covered my nose and mouth crying and asked her gently to remove her clothes. I had her use baby wipes to remove the poop. As she removed her clothes it fell onto the floor. She was completely oblivious.

After her shower she still didn’t smell right to me. She had breakfast / lunch, pills, coffee and then she sat outside for the duration of the day.

It took the entire day to clean. The so called waterproof mattress protector didn’t protect and my sigother called into work to help clean. The steam cleaner seemed to suck some of the urine out of the mattress. That part of the house suddenly stunk like a nursing home. Just like that. The comforter, sheets, blanket, pajamas, and carpet had to be washed.

Mom had to use the restroom. I went in there with her and waited. Then I did something I couldn’t think about because I never thought I would actually do it. I put on surgical gloves and wiped my mother’s bottom.

Later in the day I did it again.

She seemed uncomfortable. She winced in pain no matter how gentle I worked. Maybe constipation? She couldn’t answer.

I made desperate phone calls. I cried to my sister. I cried to my aunt. I confessed my need for antidepressants to Grandma. I felt so weak and powerless. I had trouble falling asleep and wished a nurse or a comedian could help me get through this.

Seven days

Posted on 7 October 2011 by Sarah

Again the extremely popular wireless telephone company let me down. The admitting director had just told me my mother had a small accident number one and two. These are the firsts. I sat there cursing the enamored service provider after no sound ommitted from my iTelephone (R.I.P Steve Jobs).

‘So agreeable. So passive. Gets along very well with the staff.’

I cried afterwards. I don’t know why. I went outside with Pip to feel the incredible warmth of an Autumn day uncharacteristic of this time of year. I sat down. My back protested again. I thought of all the things I wanted to do such as vacuum. I thought how I didn’t really think of her over the last day. The first day I haven’t thought of her.

Tears. Then the irritating sound of a leaf blower. Are you kidding me. I’m having a MOMENT! but I guess that is what was needed to snap me back into reality.

I don’t know why I was crying. I felt the need to be in bed all day. I felt really sad about mom. I felt really guilty about leaving her there. Please don’t tell me how great she is. I already know and feel as though maybe I have no need to complain. Maybe I have no need to place my mom. They might not know they DON’T know what we go through.

I guess she does not compare to other patients with AD. I’m happy she did well. Perhaps I’m sad she isn’t as happy here. Perhaps I am sad she will be home in three days.

I haven’t been able to adapt well. I guess. The feeling of not having her around is lonely. But at the same time feels normal. Her being isn’t here. and isn’t here when her physical body is here.

I don’t know how to feel. I don’t know what to do with myself. I’m unable to finish a project without her there with me. But she’s not really there!

A mild wave of revulsion passed over me

Posted on 11 August 2011 by Sarah

I wish I knew if I was doing the right thing.

I wish I didn’t have to do this alone.

I wish there was someone to HOLD MY HAND as I do this.

I wish there was someone to drive me and help me ask the right questions.

If only there was someone to show me this is the correct thing to DO!

If only I didn’t care and had no feelings of sadness.

I wish I could see ahead in the future and know these choices I am making are the right ones.

I wish I didn’t have regrets. I wish I didn’t have to make these choices for her. If only I knew it was the right one. I feel so sad. If there was just something that could show me I am doing the right thing.

For now, I’ll have a 4 month old Pip with me doing the best she can do to sit in the back and breathe the cool late summer air and wonder where we are going. I feel so lost, so empty so sad. If only if only.

Don’t tell me a story with dialogue

Posted on 26 July 2011 by Sarah

I am seated across from my Mother where I’ve sat for nearly 25 years. She never said goodbye I thought. Maybe all the years she spent making curtains, clothes, sweets, bag lunches, breakfasts, and suppers was her goodbye. They have turned into memories of her life.

Sarah Spelled the Right Way

Category Archives: alzheimers