It's Over

I stopped writing months ago- things got really crazy and I just didn't have the time. The stress heated up even more...

Dad had a horrific blood infection at my last writing. He ended up in the same nursing home as my mom, but on a different unit. We kept the fact that Dad was there from her for quite a long time. She knew he was sick, but not HOW sick he was. Dad  wasn't ready for Mom's constant ministrations and she couldn't have helped being a nurse.

Eventually she found out he was there. Cousins had come and visited both of them in the nursing home. They didn't tell Mom anything, but while they were there, they took pictures. They sent cards once they got home. They sent pictures of Dad to Dad. He was sitting in his wheel chair with oxygen right outside of his room.

They sent pictures of Mom to Mom. The problem was, when the nursing home staff person got the mail, for some reason they changed Dad's room number to Mom's and she got both cards. The you-know-what hit the fan!

My daughter was the first one to the nursing home and she got the brunt of my mother's wrath. Dear One was at fault for not telling her grandmother Grandpa was there.  It was quite the scene.

While it was stressful at the time- that was actually a kind of funny/fun period. Keeping the secret and walking through the nursing home like spies, looking around corners to see if anyone was seeing us and we went from Unit to Unit.

Through the next year and a half, there were a lot of ups and downs. A lot of ER visits A lot of meetings.  Dad was on his unit until it was time to apply for medicaid. He didn't want to room with Mom. He eventually was able to get out of the wheel chair and walk, mostly with a walker.

Mom got kicked off one unit for attacking another lady with her walker. And Dad went to the unit Mom got kicked out of. It was a good unit, with good nurses and good staff.

The unit Mom went to was never as good as the one she came from. I know it is hard to believe, but the unit she went to, right around the corner from Dad was as different as night and day. Dad got great care. Mom got mediocre care at best. Occasionally she had a wonderful nurse, nurse M. And occasionally a couple of the nurses from Dad's unit would rotate over to Mom's unit. But mostly she was not treated well. And mostly ignored.

Mom and Dad did not share a room, although they could have. But it was way too stressful for Dad.They ate together and visited. Dad was still very with it- although at times you could see some degeneration.  He made friends with the staff. And almost every day he took a walk with his walker outside.

We tried over and over to get Mom into the Alzheimer's Unit, but she never "qualified." Oh there was no doubt about her Alzheimer's. The staff knew she had it. But she kept passing their damn little "tests." Could it have been she was on medicaid and they could have gotten more money from a private pay patient? We can only speculate.

Dad fell and broke a hip on November 30th, 2012. He had internal bleeding of an unknown origin that had caused him to pass out. They wanted to do some tests. One was a colonoscopy. He couldn't drink the stuff they wanted him to drink and they wouldn't do the test without it. They wouldn't fix his hip without knowing where the bleeding was coming from and Dad said enough. 

He wanted to be made pain free. He wanted to be comfortable. He knew with his heart issues, his blood pressure issues, etc that his chances were not good with the surgery- and in fact wanted the surgery so he might die on the table. Of course the surgeon wouldn't consider that.

So Dad went into hospice. My brother came form Colorado.My daughter, Dear One, promised Dad she would be with him till the end. My brother and I were with her keeping vigil.

On Dec 4th, about 2:45 pm I  left to go to the Nursing Home to talk to Mom and let her know that Dad was still in the hospital. We just kept telling her he wasn't doing well, hoping to break the news to her gradually. My brother went to the cafeteria to get my daughter something to eat. We had both no sooner left, when Dad died. My Dear Daughter was with him, just as she had promised. And Dad spared us his passing.

It was not easy telling my Mom. We all went to the nursing home, my dear daughter, my brother, my husband and my son. At first Mom thought she was being blessed with a visit...but then the reality hit.

We had one staff person tell us it would be better not to tell Mom. But I knew I had to tell her. If she didn't comprehend, and if she didn't remember later, I would not have put her through it again and again. But she knew Dad was gone and she missed him.
She was heart broken.

My cousins came (the ones who had taken  the pictures during our espionage period) and m sweet Miss Maggie took care of Mom throughout the ordeal of getting ready for the visitation and funeral.

We had a visitation on Dec 6th, 2012 and we had the burial a couple of hours later. Mom came to the visitation. Miss Maggie made sure she had her hair done and got her dressed. They came half way through so Mom wouldn't have to endure the full two hours. Dad look really good...I know that is an odd thing to say, but he did. And Mom couldn't believe he wasn't warm. She cried a bit and she wanted to touch him- and kept saying he was so cold.

We went to lunch and then to the burial. It was supposed to be graveside, but we didn't realize that the area where they had there plots had a small chapel and that is where they had the burial ceremony. It was raining and muddy, so it worked out, but it was also very cold. Dad was a WWII Vet, and so we had the Honor Guard.

The next day, we had a Memorial Service at my church, and my mentor, a pastor from a neighboring church, did the service. it was very nice. Mom did not come- she would not have been able to hear anything, and since the burial had been the day before we felt it would be confusing. It was a nice service. I believe Dad- who said he didn't want much in the way of a funeral, was pleased. We toasted him with Chocolate Milk during the luncheon. Chocolate was his favorite food and after bourbon- chocolate milk was probably his favorite beverage.

Soon after Dad's death, I became very ill with a laryngitis type illness. I pushed myself to work (preach) and got sicker. I ended up missing most of the month of December- including Christmas. I went to the doctor three times- there was nothing to do but wait it out.


In Mid December my dear daughter went to visit Mom and found a handful of Mom's medication hidden in one of her drawers. I raised hell  with the nursing home and was promised they would watch her take her meds.

Mom had some other issues going on- including a terrible rash...I'm not going to go into details on some of this, at least not at this time.

Mom had a fall on Jan 2- one of many I'm afraid. The nursing home would say she couldn't use her walker because she wasn't safe, then they would say she needed alarms because she wasn't safe and then they would get tired of her complaining about the alarms and not having her walker and they would give in to her.

I saw Mom frequently and I was concerned about her weight and her not eating, but I kept being told she was fine and eating normally. We again found medications Mom hadn't taken-
in her bed. To not go into too much detail right now, on Feb 4th, 2 months after Dad died, Mom fell again and when my daughter went in to check on her she found her to be severely dehydrated, although the nurse on duty denied it- she told my daughter that my mother just had "old skin."

Mom ended up in the ER that day- and the next day, Tuesday Feb 5th,  hospice was called in. My mom could not hear without her hearing aids. And she had not been reading lips for a few months. But in the ER, she was reading our lips. And she kept telling us she loved us, over and over again.

On Wednesday Feb 6th, I told my daughter that Mom might want us to leave before she would feel comfortable dying...she was a very private person when it came to her body...so a little before 8 am, we told the nurse our thoughts. And we decided we would leave the room a few times during the day to give her the chance if she wanted to. We didn't think she was really ready yet. And I had no idea how to tell her since she was no longer opening her eyes and she wasn't wearing her hearing aids. But I just went up to her and told her( as if I was talking to someone with good hearing). I told her it was okay to leave us if she wanted to, that we respected her privacy. We loved her and Daddy was waiting. We were just going to leave for a few minutes and come back.

We left for 10 minutes. When we got back, she was gone.

                                       Dad and Mom at one of their favorite restaurants. 
                                     
 I miss you guys.

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!)