Sometimes Good Days are Really Bad Days in Disguise

Mom had a series of pretty good days. She did well with her doctor’s appointments on Tuesday and it was a relief to talk with her and the doctor about Adult Day (Care) Programs. Wednesday, she really seemed to be doing pretty good too. She laughed some. It was a little confusing for her because  it was cleaning day, but the weather was bad and so the cleaning ladies postponed until Thursday.

 

Wed night, Mom thought the next day was Friday and was anxious to get her hair permed. Thursday she was “with it” and was a little put out that the cleaning ladies were late and also wasn’t happy that I was at the church all day. But she was okay.

 

Friday was hair day and Mom was up and dressed and had her hearing aid in at 6:30 AM! She was so looking forward to her perm. I’ve learned now to write notes and leave them on the kitchen counter to let her know where I am, and what time she needs to be ready if we go somewhere.

Mom got her perm on Friday morning and when I went to pick her up she was angry and upset. She was cold. She said she had never been so cold in her life. She told Pam she wasn’t coming back for a perm until summer. Pam told me the perm solution was cold and she thought it kind of chilled Mom to the bone. Mom was not happy and even though we told her how nice her hair looked- it didn’t make much difference. She was with it and she was angry.

At dinner, she lost a crown on one of her teeth. And when I called, I found out the dentist would be closed on Saturday.

That night when I went to give her pills to her, she was sitting in her chair with her hands over her face. It was such a picture of hopelessness…

I asked her what was wrong. She looked at me and said,

“I’m depressed. I’m very depressed. I hate this.”

“What are depressed about Mom?”

“What do you mean, what am I depressed about?? I’ve had bad hearing all my life, I have lichen planus in my mouth, things don’t taste right, sweet things taste salty. My mouth is always a mess. And now- and now I have this awful Alzheimer’s! I’ve tried to be a good person. I say my rosary and pray and I can’t help but end my prayers with WHY?”

“I know Mom it isn’t fair.”

“I’m stuck living here. No no! Don’t get me wrong! I’m grateful to be here, but I didn’t want to end up here. This place is lovely. But it’s not mine. I can’t have my own money anymore. I can’t drive. I can’t talk on the telephone. I can’t go to the mall and visit with people. I can’t go to my own hairdresser. I can’t I can’t I can’t!

There was a silence.

“Mom, try counting your blessings…”

“You don’t think I count my blessings every day?!” She was yelling.

“Mom, I’ll talk with you, but if the yelling starts and an argument starts, I’m going to bed.”

“I’m sorry! I don’t want to argue. I know I have blessings. But sometimes I wonder if there is any reason why I shouldn’t  just give up.”

“Because you don’t give up. Because God is with you even when you feel alone. Mom, let’s see about you going to one of the Adult Day Programs Dr. P talked about. At least you would get out of the house once a week or so and you could be around other people going through the same thing you are going through.”

“I think I need to do that.”

“I do too. I love you Mom.”

“I love you too. And I don’t mean to be ungrateful. I am amazed at every thing you do for your father and I. I know its not easy.”

“no- sometimes its not.”

“you need to go to bed. Thank you for talking to me.”

“okay Mom.”

“Good night.”

“Good night.”

Hug. Kiss.

She was having a “Good Day.” She knew what was going on. And it made her so sad. Good days are not always good. Good days are knowing how bad things really are. She was for a few minutes, my Mom. And she knew- she knew how much she had lost and was losing. And I don’t think Good Days are always good. Sometimes they are painful. Sometimes they are bad.

 

 

Catching Up- a day at the clinic

Spent all day yesterday at the Hospital/Clinic with Dad as he went through all of his pre-op appointments. Surgery is scheduled for November 11th.

He had 9 appointments in all. The first one was at 8:00 am and the last at 3:00 pm. All looked good for the surgery. He will probably be the first surgery of the day- and will probably need to be at the hospital at 5:30 am on the 11th. We will be called the afternoon before.

It was a quiet and peaceful day. Mom stayed home with my DH and Dad and I were able to spend our time in silence and in quiet conversation. Some good discussion, but mostly quiet. And both of us grateful that Mom wasn't with us.

That may sound harsh, but one doctor's appointment for Dad with Mom there is a trial.  Getting from one place to another is a slow process and it is wrought with interruption.  When another appointment or two is added...

There are always people she "thinks" she knows and she feels she must stop and talk. When she finds out she doesn't know them, then they must hear the long explanation of how she was a nurse here for 40 years etc etc etc.

And then there are people she does know from the auxiliary and we must stop and talk to each one. 

Then there are the pregnant ladies who must know that mom was once a nurse in OB at this very hospital and she must know who their doctor is. And then we pray we can get her away before she starts touching their "baby bumps."

There are the ladies taking home their babies in the waiting area for someone to get the car and pick them up. We try to steer clear of those, Mom wants to look at the babies closely and touch them and while we know she means well, others do not.

There are the patients in wheel chairs Mom thinks she must push or help them figure out how the wheel chair works.

There are the complaints about how she should have brought her cane as her knees hurt or how she wish she had left her cane at home, she doesn't need it. There is the juggling of two books, and a heavy purse (and sometimes a cane as well) and the occasional water bottle or coffee or both.

There is the irritation when we tell her we must hurry and there is the resignation  (on our part) when we realize that is not going to happen.

There is the meal or snack that must be eaten out and the indecision as to what that should be. There is the questioning of everyone with her as to what they are going to eat and then the painful decision making as to what she will eat. There is the "I will not leave this table until I finish my coffee/tea I just poured" even if we are running late for another appointment.

There is the constant questioning as to what everyone is saying/has said or possibly will say. Not just our own conversations, but those of the people around us.

So- it was a quiet and peaceful day for Dad and I. Just the two of us, our own thoughts, speaking when we wished to and visiting if we wished with people we wished to visit with. (bad grammar I know)

My DH on the other hand,  took Mom to get her hair done and then took her out to lunch at a favorite local pizza restaurant. While there, Mom started talking (loudly) about  being fitted for her first diaphragm at the gynecologist office!

They had some other discussions as well and when my DH went to leave, a gentleman stopped him and told him the table-talk about the gynecologist office was inappropriate.  D politely (I hope!) asked the man if they have a family member with Alzheimer's and pointed out that chances are if they don't they will and he hoped the best for them.

Mom seemed to enjoy her time with my DH.  And how fun for him to hear the old diaphragm story! Love that man!

Updates on Dad

Dad's mini-stroke was determined to be a mini-stroke and not a TIA- because according to his doctors -a TIA lasts for 10 minutes or less and Dad's lasted at least a half an hour. That's not what it says on the Mayo Clinic website, but if that's the terminology they wish to use, then that's okay with me. I am thinking mini-stroke may be more accurate because to me it seems there are residual effects from the incident. His personality seems to have changed slightly, understanding and quick response seems to have diminished. Perhaps its just because I see him all the time and when he is different, it stands out.


Dad came home on Monday afternoon the 18th. He was started on Coumadin/Warfarin. I know this is very common and there were a LOT of questions why Dad hasn't been on this before. He had a stroke in the late 90's and he has had major heart surgery. Whatever the reasoning, he is on it now. They want his INR to be between 2-3.

We were worried about this because he seems to have issues with clotting, and he bruises very easily, but the INR test done in the hospital was only 1.1 and the test done the the 20th and 22nd were 1.2 and 1.4- so he has a way to go before he hits the desired 2-3.

On Sunday, the 17th, Urology was brought in for a consult because he wasn't fully voiding. The urologist talked about putting him on a "shrinker and relaxer" for his prostate.He said he had to see if the hospital had it because it is so new and is a combo of Flomax and Avadart. To make a long story shorter, he forgot to prescribe it and there were NO NOTES in his medical records to even show this particular doctor saw my dad. My daughter was there when the doc came in and knew him from a surgery my grandson had. So, we finally got the prescription and have found out this is SO new the pharmacies around here have to order it. It will not be available until Monday afternoon. It is also so new it is not listed on the http://www.nlm.nih.gov/ website.

My daughter asked Dad how he was feeling about what happened. Dad said it reminds him of his favorite song by Frank Sinatra-  My Way



Dad has always loved the song- but his emphasis now is on the first line. "And now the end is near; and so I face the final curtain."

I don't know if that is true. I don't know if the end is near; but if he feels that way, it might delay in his getting better.

Not an easy subject to discuss and made even harder because it is nearly impossible to get Dad alone long enough for a good discussion.

I'm not sure how I feel about this.

Lots of things to think and pray about.

Sunday Evening thoughts

I haven't spent much time with Mom this week. I mean- we all live together, but I haven't had time to sit and visit much. Sermons, hospital visits, funeral preparations have all been in the forefront. Spent a little time with her when the kids were here. It was good to sit and talk with my mom and my daughter. My daughter did most of the talking and I could breathe and not be the bad guy for awhile.

Tomorrow after I preside over the funeral (for a woman who died on her 55th wedding anniversary), Dad has a cardiologist appointment. I don't think we'll get much information, but I hope we will find out the results of the stress test. Dad joked that waiting for the test was a part of the stress test itself. I believe the wait after is...

My brother is going to get here on Wednesday evening. I hope this is good timing so he and Dad can spend some time together. My bro may not be here for the surgery itself, but at least he will get to see Dad before hand.

Dad is worried what we will do after he has his surgery, because he won't be able to drive Mom to get her hair done each Friday for a few weeks. My first reaction wasn't very kind so I kept that to myself. Instead, I told him we would do what we can. My mother's obsession with getting her hair done bothers me- always has. This is nothing new. Dad put off going to the ER once because Mom would miss her hair appointment! Ain't going to happen again!

Okay. Time for bed and up early to go over funeral meditation.  Prayers coveted for tomorrow. For the family in mourning and for my mom and dad.

Updates!

I can't believe its been over a month since I last wrote on this blog. So many things have occurred, there is no way I can remember or update everything... but here is what I can tell you:

I was away from home at school for 10 days. It was a great break for me, but a difficult time for my husband and father.

Coming home was a shock- my system wasn't prepared for reality. I was short tempered for a couple of days as I tried to get back into the swing of things. Mom was confused and irritated that I had been gone. To top that off, there were doctor's appointments and off course trying to get back in the swing of things at work too.

Mom's doctor's appointment went okay- she tried to persuade her primary care doctor (Dr. P)  that Dr. A's diagnosis was wrong. Dr. P added Namenda twice a day to the Aricept and also added Zoloft for depression. I'm happy to say I think one or both are helping. There isn't as much negative talk and negative, nasty behavior. She seems calmer and doesn't upset as easily.

Dad has a CT scan on his Abdominal Aortic Aneurysm. We got the results yesterday and it isn't good. He will need surgery soon. They would like to use a stent, but have to contact the company that makes the stents to see if it will work with his condition. I suspect his surgery will occur before the end of the month.

There are a lot of unknowns with this. What do I do with Mom while Dad is in the hospital?  How much help will he  need when he gets home and how much will he be restricted? What does that mean for Mom's care?

??