Between Hospital and Nursing Home

My father has been in the hospital since Tuesday. What started out as an ER visit on Saturday for stomach pain, turned into a hospitalization on Tuesday for a completely different matter.

Bodies age and the cumulative effect of that aging can make things go wrong all at once...

Right now Dad has terrific back pain due to bone spurs in his spine. He is on pain meds and there was tallk of an injection in his spine, but then they found out he has a blood infection. They won't do it while he has an infection of any kind. He also has pneumonia in one lung.

Since he has a pig valve in his heart, they are worried his valve might be compromised and he might need a new mechanical valve. A TEE (transesophageal echocardiogram) is scheduled for tomorrow morning. Sunday morning.

Mom doesn't know he is in the hospital. She knows he has had bad back pain and has had tests done. She is accepting that at this time. I've told her he can't get to his computer because of the pain. The nursing home staff would like to keep the hospitalization from her if possible.

Dad is not himself. And I'm terribly worried.

Been gone far too long!

Many of you have sent such sweet messages. I know I’ve been gone far too long and will hopefully get back to blogging again.

Of course, many things have happened and I can’t possibly recall it all- that’s why the blogging is so good.

Mom is doing okay. She is for the most part happy at the nursing home. She is, however, asking again for a new roommate. If she gets one, it will be her third. The good news is she and her old roommate are speaking again. What I really think is happening is that Mom is a nurse living in a nursing home. She sees patients all over the place and she can’t seem to help trying to “help” them.

Right now, she and her roommate aren’t getting along and when I visited the other day it was apparent to me that neither one of them could hear or understand what the other was saying. They both took what was said wrong and both got mad. If it weren’t so sad, it would be comical…

My brother came and took Dad on a trip to Washington DC and mom did okay with it. She’s been giving Dad a bit of hell since he got back, but I wouldn’t expect any different.

I try to visit once a week. Dad goes 3-4 times a week. I can’t go much more than that at this time, because the longer the visit, the dicier things get. We get along fine for about an hour. Then the “Oh I’m so glad to see you!” wears off and the complaining starts.

I am taking better care of myself- I’ve joined an exercise class (kind of a boot camp for women) that meets three mornings a week (5AM!) It helps with stress and it helps me physically as well.

My Alzheimer’s support group is doing well- we’ve met twice and have about 8 members so far.

 

I will write more soon.

 

Daughter

My Mom is…

very, very happy! Dad and I are waiting for the other shoe to drop…but right now, Mom is the happiest I’ve seen her in a long time. Years really.

Mom went into the nursing home on Thursday, March 31st, for 30 days of respite care, so she has been there a  week. She is in her element. She is around nurses. She is on a “floor” with patients. And she has lots and lots of activities to go to.

 

She has a roommate who less than a month ago lost her husband. They seem to be very compatible. They are both Catholic and so they have that in common. They seem to be good together.

When I have visited, Mom has no complaints and we seem to be able to talk without arguing… She has been asking people if they think she has Alzheimer’s. But she hasn’t asked me.

She fell one night getting out of bed, but was okay. She did have to get help to get up again and she used her call light to get help.

Dad and I have made the decision to make this a permanent placement. Mom doesn’t know this yet, but it is so obvious she is happier there than here with us.

Sunday, Dad and I went to visit and she chided us for not being there for over a week- and then I reminded her she had been there only since Thursday. I also reminded her that we had been there with my daughter and grand-daughter “Little-Bit.” She said:

“I remember Little-Bit being here, but I don’t remember the rest of you.”

“Mom, Little-Bit didn’t come by herself. She doesn’t drive.”

“How old is Little-Bit?”

“Six”

Laughing- “Well I guess she didn’t drive then did she?” Turning to her roommate- “I thought my six-year-old great-granddaughter came here by herself. Isn’t that funny?”

And they both had a huge laugh.

Thank You God!

After Daycare today

After day care, Mom came home and said:

I talked to Denise this morning. But I don’t remember why.

Did you talk to her about staying at the nursing home?

Yes. That was it.

(Turning to Dad)

Would you mind if I lived at the nursing home?

No. I think you might like it.

I do too. I like being around other people.

I will miss you.

I can probably make some good friends. I’ll miss the day care people though.

I will miss you.

(To me)

Daughter, Denise told me to tell you to call her. She will help do this.

And she walked away.

 

Dad looked a little stunned. But then he gave me two thumbs up.

More Surprises…Good Ones!

I took Mom to daycare this morning- not her usual day, but thought she might like to go after yesterday. On the way, we had this conversation:

How were the social workers yesterday?

Well they were nice. They think your Dad and I should move to assisted living. I told them we looked into it but we can’t afford it.

Hmm.

They said there are two assisted living places that take Medicaid.

I don’t think Dad wants to move to assisted living.

I don’t know. I haven’t asked him.

I think he’s content to live with us. But I wonder if you need to be around more people.

I do. I really do. What do you think of assisted living?

For you, by yourself?

Yes. I  think I would like it.

The only thing that bothers me is you being alone in your own place at night. Without your hearing aids, you can’t hear anything. And that bothers me.

Yes- I don’t think I’d like that.

Well Mom, there is another alternative. You could live at the nursing home.

I could? Would I still get to go to the daycare?

Well, no., you couldn’t go to the day care, but you could be involved in the activities of the nursing home. They do things too. And other people could help you and you could help other people.

I would like that. Nelda was there before she died.

I know. And there would be people your age there. You might even find people you know.

I wish I knew if I’d like it.

Well, there is what they call “respite.” You could try it for a month and see what you think. And we could se what we think.

Where would I do this?

At the nursing home where the daycare is.

Would I still get to go to the daycare?

No- but they have activities. And it’s much nicer than the old nursing home where Noni and Grandpa were.

I don’t remember your grandmother being in a nursing home.

Well, I’m pretty sure she was for awhile.

And I know your grandfather wasn’t. I would remember that!

Hmmm.

Do you think we should do this?

Let me check into it. Why don’t you talk to Denise (the head of the daycare) when you have time today and see what she thinks?

I will!

We arrived at the center and I went in with her to sign her in. As we were going in, Mom spotted one of her friends sitting waiting. Mom whispered to me:

That’s my friend. I’ll introduce you. I help take care of her here.

Mom introduced us and the lady stood up and gave me a hug and whispered in my ear:

I want you to know, I take care of your mom while she’s here. She always wants to sit with me and we go to the ladies room together.

I smiled as I left.

 

 

 

 

Update…

To clear up any confusion…Mom is at home with us. Mom was having one of her good days yesterday. Last night Mom asked me if I am all right.

Are you all right?

I will be….

Did I do something to upset you?

No Mom. It wasn’t you. It was the doctor.

I love you.

I love you too.

Do you need to talk? I’ll listen.

Not now Mom. But we should probably talk soon. I’ll let you know when I’m ready.

Okay- Good!

(pause)

Are you all right?

I will be.

Are you mad at me?

No Mom, I’m not. I love you.

That doctor was nice.

(silence)

Did the doctor upset you?

Yes.

She was nice. But I really didn’t understand anything she was talking about. Except now I can take my “puffer” the way I want!

Yes. Yes you can.

Hugs…

 

 

Sucker Punch…

Took Mom to Day Care this morning and Dad to the doctor for a recheck after being in the hospital. Dad looks good- but when he was in the hospital and they did a CT of his abdomen, they saw gall stones. So now they want to have it checked further and have another test done and see a surgeon. He is not having any symptoms- so we were told they probably won’t suggest surgery until he has symptoms. More appointments. Yay.

 

Brought Dad home and then an hour and a half later, picked Mom up from daycare to take her to the doctor.

 

Her doctor was unavailable, so we saw a resident. The resident has a “real” doctor who follows up. The resident checked Mom out and changed the way she is receiving her asthma meds. He knew I wanted to talk to someone about nursing home placement.

So Mom went back out in the waiting room with my son and I went back in to speak with him about my concerns and how I need to stop being Mom’s caregiver. He had  me bring Mom back in.

 

He gave Mom an MME (Mini Mental Exam) I told him ahead of time that she will ace it. She did. She only missed three things.

Then he went and got the “real” doctor. She is a geriatric doctor. She came in- saw Mom’s test results and said:

Dr.-“You do not have Alzheimer’s.”

Mom- “I don’t?”

Me- “Don’t tell my Mom that.”

Dr.- “It’s true. There is nothing wrong with your Mom. She is fine.”

Mom- “I thought I was fine.”

Dr- That test you just took? That shows you are fine.

Mom- I just took that the other day at the… the…. the….place I go to. You know.. At the nursing home. The care place for grownups.

Dr.- The Adult Day Care?

Mom- Yes! They are very nice there.

Dr.- My mother goes there too.

Mom- Who is your mother?

Dr.- Lois.  She has Alzheimer’s. You don’t.

(Thinking I am at any moment going to hear:“You're traveling through another dimension, a dimension not only of sight and sound, but of mind. A journey into a wondrous land whose boundaries are that of imagination. That's the sign post up ahead, your next stop...The Twilight Zone!" )

Me-“What are you doing?? I’m here to get help. What are you doing? She was diagnosed by Dr. A. He’s a neuro-psychologist.

Dr.- He was wrong. My mother has Alzheimer’s and your mother is fine.

Me- Then you take her home for 24-48 hours.

Mom_ I told Dr. A I hope someday someone tells him he has Alzheimer’s so he’ll know how I feel!

Dr- I don’t see any reason why your mom can’t live in assisted living. She really doesn’t need any help.

Me- What? You’ve got to be kidding me.

Dr.- No- she and your dad would be fine.

Me- It would kill my dad.

Dr- You mom could probably live by herself then and be fine. Let’s get a social worker in here to help her find assisted living.

Me- I am not listening to this any longer!!!!

I got up and walked out. I left my mom. I was furious. Furious.

To make a long story shorter-

I called dad- he was distraught.

My son called my DH and he left work.

I went back into the clinic, but refused to go in to see the doctor. The social worker came out with my mom and told me I needed to make Mom another appointment with mom’s regular doctor and that she gave mom info on assisted living.

I looked at her and when she tried to hand me the papers I shook my head and said:

“No- I can’t do this anymore. I will not do this anymore. You have no idea what is happening here.”

She asked me to go talk with her. I did.

My poor Mom was so confused. She asked my son if I was mad at her. He said, “No- grandma, Mom is upset by something the doctor said.”

Mom said, “I don’t know what the doctor said to her, but she was very nice.”

The social worker is going to try to get respite care for Mom at the nursing home. She may be able to be gone a month.

My DH and I talked to the director at the day care and she is going to talk to the nursing home management and the social worker. She is concerned the other “doctor” may have written a new “diagnosis” for my mom.

Does a 5 minute visit with a patient  by a geriatric doctor trump a three hour evaluation done twice by a neuro-psychologist?

Can’t get another appointment with my Mom’s real doctor until May 18th! I may have to switch her doctor…

 

If you see Rod Serling- would you please tell him to stay away from me. I can’t take much more of this!

 

 

Note written to a friend of my Mom’s

People who love my Mom and see her infrequently do not see the changes. They are not here 24/7 to see what it is like- what she is like. A friend of my mother’s wrote this to me in December:

Thanks for your email. I am glad to hear from you. “Your Mom” and I had a wonderful time.!! She was completely normal, heard almost everything I said,and we had fun !!  The food was great,too. Your Dad seemed fine when I visited with him...... ??  That place sounds great, but I don't think they are ready...they like being with you sooo much.. they both brag about you, and are delighted with their living arrangements, and think it's perfect. It reminds me of the Amish, who never stuff their parents in a nursing home. They build a "Dawdi House", connected to their house. The youngest son gets the main house and the parents live in the "Dawdi House". I am so proud of you for doing what you are doing..I know it must  be very difficult and energy consuming...But, it is the right thing to do,it is what Jesus would do..you are brave, i am proud, they are not ready to move away.I am sorry that this is not the answer you wanted or expected...Keep up the good work ! I know it  is hard, but they are worth it !!Jesus loves you and so do I....

Recently- she wrote to me on Facebook and said:

How is your Mom? She never emails me,, has she forgotten me? She just sends me forwards.. not the same as email.. How are you holding up???? You have a BIG JOB !! Jesus knows what you can handle... yeah..keep up the good work !!

I love this woman- she has been a good friend of Mom and Dad’s for a long time. But it is frustrating to get these kinds of messages. (If you read this sweetie- please know I love you and have left your name out of this.)

This is what I wrote back to her…

 

Mom has Alzheimer's. She can and does "hold it together" for awhile when she is with others. She loves the  adult day care she goes to 3 days a week. She can socialize. She can shine. She is high functioning in her ALZ. But- she has Alzheimer's.

She is not a nice person any more. Not to me- a lot of times not to Dad. It is not Mom- it is the Alzheimer's.  We are the enemy.  And I am the General of the enemy army. She hates me.

Mom does not hate me. Mom loves me. But ALZ-Mom hates me.  She spews venom at me. She can say the words "thank -you" as if they were dripping with poison. And each barb hits home and hurts a bit more. The poison in those barbs is slowly killing me.

ALZ-Mom does not believe that she can lose something. She believes people are hiding things from her. On purpose. To hurt her. ALZ-Mom makes excuses. She hasn't fallen because of lack of balance- she has fallen because she has moved to this house. ALZ-Mom thinks when she says she will do something she will do it. But ALZ-Mom doesn't remember whether or not she has done something, and cannot be relied on.

ALZ-Mom is crafty and angry. And paranoid. ALZ-Mom doesn't believe she can make a mistake. ALZ-Mom thinks (her daughter) shouldn't tell her how to take her medicine and doesn't believe her when she tells her ANYTHING about the meds she takes.

ALZ-Mom uses every chance she has to complain to her daughter about anything and everything.

My mom- my real mom- gave me a hug the other day. It was a real hug- full of love. It was wonderful. But ALZ-Mom took over again. Her hugs are not giving--they are demanding. Her hugs are not to comfort or to show love. They are to demand something from someone else.

What's wrong with me? I do not sleep well and am tired all the time.  I'm exhausted. Mentally and physically.

I do not like my ALZ-Mom. She is too much for me. I hate the arguing. I hate the bickering. I hate being told how little I know and how awful her life is because of me. My ALZ-Mom thinks I GAVE her ALZ. She thinks I WANT her to be sick.
My ALZ-MOM is killing ME. And I cannot do this much longer.

Yes- God strengthens me. Yes- God is with me. And it is only through God and the prayers of the people who loves us that I have gone this far. But there is a limit. And it has been reached. We are looking for placement for ALZ-Mom.

I'm sorry to disappoint you.

My feelings exactly!

Well the day has just begun and I'm already running late

With too many irons in the fire and too much on my plate

I'd be pulling out my hair if I could just get one hand free

And I'd stop this world if I could find the key


What I see is telling me I'm going crazy, but

What is real says God's still on His throne

What I need is to remember one thing

That the Lord of the gentle breeze is Lord of the rough and tumble

And He is King of the Jungle

(Thank you Steven Curtis Chapman!)

Thoughts…

My favorite blog writers all seem to be talking about spring, about seasons and the cycle/seasons of life. As a pastor thinking each day about this Lenten season we are in, I think about the seasons of life as well.  A new season, a new part of our lives is beginning as we look at extended care for my mother. There is anxiety about this. There is guilt. There is relief. There is fear.  All understandable. All probably unavoidable. All very, very human.

For the most part, change isn’t easy, but it is necessary. The seasons change. People die, babies are born. Flowers bloom and then they die. Some are reborn in the spring; others become compost for the earth to help nourish the new flowers. It is all a very complicated and daunting thing to think about.

When a change is made, especially a big change is made, the fear of the unknown can triumph over the knowledge that God is in control. Normally each day, I see the “God-things” that make life worth living. But during a time of fear- it is easy to let them slip away unnoticed.

One of the members of my congregation asked for prayers for her father today because he is facing the truth, the truth that he will die-probably sooner rather than later. Not an easy truth. Not for her father, nor for the daughter. As my dad and I talk about extended care for my mom, we are both hit with that truth as well, and with the fear that goes along with it.

At the ages of 86 and 81respectively, I know that I will not have my Dad and my Mom with me on this earth forever. And we don’t know the day or the time…but we do know life doesn’t last forever.

The “what ifs” bother Dad. “What if she goes into a nursing home and dies two months later?” “What if she hates it and hates us for placing her in extended care? What if…?”

Truthfully- I thought she would hate adult day care, but I was wrong. So I am hopeful she will adjust well to extended care.

Today, we went to a Chinese Buffet for lunch. After lunch, Mom opened her fortune cookie and it read, “Now is a good time to finish unfinished projects.” Mom read it out loud and very matter-of-factly said, “Maybe this means I am going to die soon.” Dad looked down at the table. I wasn’t sure I heard her right, so I asked her what she had said. And she repeated it.

I don’t want Mom to die soon. I don’t want anyone I love to die soon. I also don’t want to see Mom live another 15 years, slowing losing everything that made her who she was… As some have said- Alzheimer’s is a bitch. It’s unfair. It’s like living through the worst nightmare of your life. So Lord- it’s up to you. It always was and still is. There are worse things than death. We who have seen Alzheimer’s know that.

So- this new time in our life, this new season, this new phase will bring with it uncertainty and surprises. Just like every other part of life. I pray we can see the blessings as they occur.

 

Everybody wants to go to Heaven, but nobody wants to die.
Lord I wanna go to Heaven, but I don't wanna die.
Well, I long for the day when I'll have new birth, but I like livin' here on earth,
Everybody wants to go to Heaven, but nobody wants to die