A peek through the window

Most of the time when dad and I visit mom, we get a fairly stoic looking face, rarely eye contact unless we stand directly in front of her. It’s hard to tell if she recognizes us as who we are (daughter and husband) because she doesn’t use our names. Communication is one word commands or requests – “Strawberries” or “Cake” or “Water”. Occasionally she’ll answer our “I love you”s with I love you, too. Not so much lately.

It’s like the person we knew is behind a very dirty window, or one covered with frost. We know she’s there, because we can see her shadow. We fill in the details with our own memories of who she was, who we see in our mind’s eye.

Today, a tiny circle of the frost cleared. It was a brief, but heart-stopping, heart wrenching, give me my mother back now I miss her moment.

I walked into the room; dad was sitting next to the bed, mom had her eyes closed. Then she opened them. I said “Hi, Mom!! How are you today?”

Mom: “What? I can’t hear you.” (a whole sentence? a whole sentence?)

Me (a little louder and closer to her face): “How are you feeling?”

Mom (looking AT me): “I’m feeling better”

Me: “Good!!”

and then from her lips to my heart

“I love you”

THUD

“Oh, mom, I love you, too!”

Dad gave her kisses. I went to get the ice cream to go with the strawberries and cake we brought, and to sob quietly.

When I got back, the moment was obviously slipping away. “Strawberries”, she said. And with that, the frost began to fill in that place in the window and she was gone.

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Anger

Watching my mom slowly slip into no-where makes me angry. Where does the anger go? Where is the outlet? It’s no-one’s fault, it just IS what it IS.

Today, mom ate. She ate breakfast for the CNA. For lunch, she ate the strawberries and chocolate cake I brought as well as 2 little containers of ice cream. She says so little, but today was a day of nods and single words. Did you have enough to eat? Head nods. Do you want water? Head nods. Do you want us to stay? “Go”

So, we go.

Dad seems to be doing okay, but I know he misses mom. He’s reading more books these days. He watches movies, tv, listens to Dr. Oz  How I detest that man (Dr. Oz)! He introduces a million possible health fixes on his talk show but doesn’t actually endorse them… does he? But dad keeps grasping at the threads, maybe Dr. Oz will give him the ultimate fix that will make having Parkinson’s, being overweight, and being over 80 a good thing. Ugh.

Bed.

Two years later part 3

Suicide threats, that’s where we were last time.

Mom insisted she wanted to move to a different nursing home, if she couldn’t go home. So we looked into other nursing homes, found one that was acceptable, and applied for her to move. The potential new place refused to take her because of the suicide risk. Fine with me, it was pretty far away, and I was not for moving her anyway.

So, we did all we could to make her happy where she was. I brought dinner in on several Sundays, and the family ate with her. I tried bringing in art materials but it never worked out. In November, I even brought the entire feast to her with all of the family as company on the day after (because Thanksgiving is very busy at the nursing home) and her response was that I was bringing “leftovers” and it was all in all an exhausting experience.

A few days before Christmas, her health deteriorated dramatically – she had pneumonia, so she was admitted into the hospital. It wasn’t looking good – she wasn’t eating, and was sleeping most of the time. We transfered her to the nursing home and agreed to hospice care. A couple of weeks later she rallied and recovered. We knew she was stubborn…

The result of a month of illness and absolute immobility was that she lost weight and muscle mass to the point where she was unable to recover her strength. And the dementia did not aid her at all.

From that point on, we spent less time at the nursing home. Dad and I needed to recover our strength, so we started really trusting the staff to do their job.

It has been over a year since then. I wouldn’t want to be my mom’s caregiver. She is sometimes physically abusive to the staff, sometimes verbally abusive. She hardly says anything to us when we visit. Occasionally “I love you”. Mostly “I’m tired, I want to go to bed” or “bed” “toilet”… often “go home” or “leave me alone”. How is living like this better than dying? It’s not.

So, up to date and current: Mom’s in a beautiful nursing home that is not perfect but I feel I can trust the staff to care for her. She is currently eating very little, but also doing very little besides sleeping. Her weight is below 120, and she used to be 5’5″. I jokingly tell people she would have been thrilled to be this weight when she was younger (even though she never seemed heavy to me) and now she can’t even enjoy it!

We visit her almost every day at lunchtime. The visits used to last 2 to 3 hours. Now, if she lets us stay for an hour, it’s a surprise. We were bringing fresh strawberries every day. Finding her cake when she asked for it.

I feel terrible, but I wish I could take a couple of weeks off.

Til next time.

Two years later part 2

When I left off last post, I was heading for thyroid surgery and mom was in the hospital and heading for a nursing home.

There was no damage done when she fell in the bathroom, so the next day she was transported to the nursing home she is currently in… a beautiful place that looks more like a hotel than a nursing home. We had picked it out months before as the place mom AND dad would go while I was recovering from surgery, and fortunately there was space for her. (Dad had improved so much that there was no need for him to go in during my surgery)

Mom had maybe one or two good days, and then the walls caved in. She became angry, weepy, irritable, unpleasant. Dad and I were taking turns staying with her most of the day to try to get her acclimated. It wound up being torture for us all.

Mom’s physical condition had deteriorated at home because of the injuries from falls – two compression fractures and a hairline crack in her clavicle – so she was not walking much and standing was reduced. At the nursing home, they tried using a sit to stand lift to get her to the toilet, but they found that she did not have the strength in her legs for the lift, or the stability to maintain a sitting position on the toilet. She had to use a bed-pan. This caused all sorts of grief. Did I mention the word torture?

We were constantly bombarded by requests to go home, and with stories of how the nurses and the aides hated her and were purposely leaving her places where she could not get help. There were things that frustrated all of us, but I was fairly sure that she was not left in the main lounge all night in her wheel chair (because the nurse wanted to teach her a lesson, according to mom). Put dementia with a very low self-esteem and depression and anxiety, and paranoia is the result.

My husband and I planned on going away for a night or two before my surgery, so I could relax. The day I came in to say goodbye to mom, she would not speak to me. I went into surgery the day after our mini vacation. I had one night in the hospital, then rested a couple of days at home. It was amazing how quickly I recovered from surgery, so I went in to see mom. With sutures and drain hanging from my neck, I went into her room. It did not go well. She thought she should be coming home, that we should hire people to care for her round the clock there (which is what would have been required. I don’t know how I managed for so long) and that we were terrible for leaving her in that place, selfish, uncaring. She threatened suicide.

Oh, yes, the suicide threats. “Give me a safety pin so I can slit my wrists” was a common theme. She also tried to reach for the trash can liner to put over her head, according to staff. This went on for at least a month. We couldn’t convince her that she was in the best nursing home in the area. Dad and I were getting worn out.

Part three next time.

Two years later…

I certainly did not plan to have a 2 year hiatus from this blog. My plan was to share the trials and tribulations of my journey, but it turned out to be so emotionally and physically stressful that there was no way I could put it to paper.

Two years ago, things were reaching a head. My dad was falling almost every day, his speech was almost unintelligible, and he was having trouble using eating utensils. My mom was becoming increasingly demanding, and had woken up from dreams several times convinced that she was in the garage and needed to get out – and falling when she attempted to get out of bed.

Good things happened – the discontinuation of one of dad’s medicines made a miracle happen: he no longer fell, his speech improved dramatically, and he could feed himself again properly. Bad things happened – mom fell and fractured another vertebra, and that, combined with a fractured collarbone (hairline) meant she could not walk with her walker. I had to physically help her transfer, and her pain increased.

A year and a half ago, I finally scheduled surgery to have my thyroid goiter out. The plan was to have my parents stay at a nursing home while I recovered, but by the time it was one month before my surgery, dad was doing better, and mom… was not. I was past exhausted. One day, while I was helping mom in the bathroom, she slowly toppled over and wound up on the floor, head first. It was an extremely slow fall, as she was holding on to her wheel chair arms. We decided to call for emergency help. She went to the emergency room, and while she was there, I walked up to the nurses station and said “I can’t do this any more” and we arranged to have her go into the nursing home early, after she was checked out at the hospital.

Thus began a new misery, but welcome relief.

Good day, sunshine

Yesterday was an amazing day. The sun was shining. Mom was smiling…. this happens so infrequently, it’s like a red-letter day, worthy of note.

I wish I could find out why this day occurred, and use that recipe to make it recur. This wasn’t a “mom’s back” day; her good mood was unlike any that I can remember. She watched basketball, for Pete’s sake – and cheered for one of the teams as if she was a high school student cheering for her school’s athletes. In fact, this was a high school game, and she described her feeling as being reminiscent of attending a game in her youth.

Her good mood continued into and through dinner; a celebration of a birthday in our family, and a celebration of mom actually interacting with all of us in a positive way. Usually she’s looking for the cats or distracted by her pain or something she doesn’t like about the dinner offering, but last night? It was a real family dinner.

Unfortunately, the swing upward often has a precipitous drop – when she reminds herself of everything she can no longer do. She had vivid dreams last night, and woke me at midnight telling me that she’d just had a fight with dad (sleeping deeply next to her) and that she needed to get into her night-clothes (she was already dressed for bed). We made a trip to the bathroom to change the depends and get reoriented. This morning, she was crying because she feels like the dreams meant something and she feels guilty.

But I can still bask in the yesterday feeling, even though today there are clouds in the sky and in my mother’s mood. Maybe today will retain some of the leftovers from yesterday. I have hope.

I’m losing you, I’m missing you

That’s what I feel like saying to my mother.

I had planned on giving an account of the nursing home experience, but that will wait. Today, I’m grieving. I’m grieving for the mother I knew, the mother who raised me, in a really big way. And I wonder how much longer I can hang in here, caring for my parents.

Of course, we have all been watching the recent events unfolding in the news – the quakes in New Zealand, and now the quakes and tsunami in Japan; the unrest in the middle east. These things are disturbing and sad on a huge scale. I find myself affected by the constant videos of the tsunami in Japan, now, with whole villages washed away, bodies washing up, family members missing. I cry, watching it.

Then there is the washing away happening here in my house. The tsunami of Alzheimer’s/dementia, ripping the foundations of my mother’s mind and allowing the pieces to be lost and buried in the mud, leaves shadows of what my mother used to be. I search for the person who taught me how to drive with such patience. I long for the mother who cooked, and hugged, and discussed things with me, the mother who could read a book and understand it. It’s a disaster, a natural disaster, and it’s tearing me to pieces, too.

Last night, I got my mom to bed and said good-night. As usual, she called me in for one thing or another after I had left. Then, an hour later, she called me in and said “Will you turn on the tv?” Really? Why do you want to have the tv on? My dad mumbled that it was okay with him, and there were some things taped she could watch, but I was pretty sure something else was going on.

I said shh to dad and asked again, why do you want the tv on? She said “to see what’s going on in Japan”. At 9 pm when she’s normally asleep. I said that Japan would be there in the morning, that she should go to sleep.

Mom woke me at 2:15 this morning and told me the clock was way off. I said How so? She said, well, it’s 7 o’clock. I said no, it isn’t. The clock is exactly right. IT’S JUST AFTER 2 IN THE MORNING!!! Oy. She asked when she should get up… I said 7.

Then she woke me at 4:20 and said “is this close enough to 7? and I said um NO, it’s not!! She said how close does it have to be to 7? I said at least 6 but preferably ACTUALLY 7!!

At 6 o’clock…. Sigh. The day began. After I got them breakfast and settled in front of the TV I went upstairs and wiped out, because thankfully it is one of the days the home health person comes. She was very confused most of the day.

I found out tonight that she blames me for her waking me up at 2 and 4. I told her Saturday night about the time change, and said “now don’t wake me up until 7 tomorrow, because 7 is what 6 was this morning” and she said “what will you do if I wake you up before 7?” and I jokingly said “I’ll have to strangle you”. That was SATURDAY night.

So, Sunday she woke me at 7. Good, huh? Fast-forward to THIS morning, and she was convinced I’d told her I was going to change the clocks and that I wanted her to get up at 6 (this is her explanation this evening) so she was keeping track of the time because I had changed the clocks and she needed to get up on time. Or something like that. She told me never to do that again. It was MY fault???

This is how her mind works, now. She doesn’t like the shower because it’s not like the one she had at home. She says in her old shower she could stand up. You can stand up in the shower we have, but she can’t stand for any length of time, so we have a shower chair. If she has a pain anywhere, there has to be something seriously wrong. If she doesn’t feel well, she’s sick.

I’ve been trying hard to remember what my mother was like before. I’m struggling. I’m sad. Is this really better than dieing? Living in such deep depression, losing your mind piece by piece? Really?

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