An Alzheimer's Disease Blog

Mom’s been in skilled nursing for a month. Maybe a little longer. I’m going to be seeing her soon. As you know, she is now out of state. The drive for me is a little over 500 miles.

In a way, I hope mom won’t remember that she ever lived with me. I don’t want her to have any feelings of abandonment or to be hurt in any way.

I have an appointment with the Medicaid people there next week. Three years ago, according to a loan application she signed, she had about $500,000 in cash and assets. Now she has none. She has huge debts and owes the IRS. More on that later, after law enforcement has finished their investigation.

category: Alzheimer's Disease, Caregiving, Dementia, Financial Exploitation, financial exploitation of elders, Skilled Nirsing Facility    

I really wish I could go back in time and pretty much do my whole life over again. Of course, I would need to know the things I know now.

I wish I could go back in time and get my mom to exercise.  That could’ve been one thing that could have helped forestall this disease.

It’s so hard knowing that the mom I knew when I was growing up and during most of my adult years is gone.

If I could go back and do it again, I would have been more helpful.  I would have treasured all the time I got to spend with her.   I would have been nice.

Why didn’t I appreciate her more when she was here?

category: Alzheimer's Disease    

I just got a call from Darlene, at the SNF where mom’s been for about a week.  She’s fallen again.  This is the second time now.  She is being taken to the Emergency Room for an evaluation in a nearby town. They say nobody saw her fall.  They found her in another resident’s room, sitting on the floor. She complained of her head hurting and they felt a knot on her head, so they thought it best to send her off to the ER.  I agreed.  Especially since this is the second fall since she’s been there.  I really feel bad for my mom.  I wish I could be there to help her when she needs it.

I don’t feel well today.  I really feel as though I need to take a long break and sleep for a good long time. Uninterrupted sleep. For a week.

category: Alzheimer's Disease, Caregiving, Dementia, Emergency Room     tags: Emergency Room, Fall, SNF

Mom seems to have slid into another stage or soemthing. Her mood is much better now that she has the fentanyl patch, but her behavior is getting weirder. She’s eating all the time. I’ve seen her try to eat paper products, her hairbrush, dirt from potted plants, her blanket, towels and her own fingers.

We’re trying to keep snacks around for her to munch on so she won’t try to eat these other things. It’s hard to imagine why she does it. Does she think it’s food? Is she that hungry?

She’s also been urinating in places that are inappropriate. An eye must be kept on her every waking moment. That means even in the middle of the night. That means someone’s going to lose sleep. I feel as though I’m operating at about 25% capacity.

I thought she was going to bed now, but she’s up. Gotta go.

category: Alzheimer's Disease, Caregiving, Dementia, Prescriptions     tags: dirt, edible, food, paper products, urinating

Mom saw the doctor today. Dr. S. decided it was ok for mom to stop all her meds now. All she has is something that relieves bladder spasms and a fentanyl patch for pain.

it was as though someone flipped a switch! After applying her new patch and giving her the one pill she has to take, she brightened up within a few hours. Mom was smiling and laughing! She was saying funny things again. We actually drove out for junk food! When we got home, she ate!

I hope things stay this way for a while.

category: Alzheimer's Disease, Alzheimer's disease Drugs, Caregiving, Dementia, Health, Hospice, Prescriptions     tags: Alzheimer's Disease, bladder, dementia, doctor, fentanyl

First, I’m not religious. I just had to write something that clues the reader in on what last night was like.

It was not my shining moment, let me tell you.  I lost my temper and was impatient with someone who’s very ill. I allowed my lack of sleep and the long, tiring hours of being a caregiver get to me.  I blew it.  I did everything I wasn’t supposed to do.  I tried reasoning with an Alzheimer’s patient.  I argued with an Alzheimer’s patient.  I tried to get an Alzheimer’s patient to do something an Alzheimer’s patient did not want to or, more accurately, could not do.

Starting at about 10:30pm last night, mom got up to go to the bathroom.  She never stopped.  She had a frequent urge to urinate, and there was no urine. A few days ago she had experienced that and I called the hospice nurse, who came and did an in and out cath to get a urine specimen.  The result was negative for any bacteria, the nurse said. There was no UTI this time.

During the weekend, we had started mom on pyridium and cipro.  She seemed to get better.  Then the LPN from the doctor’s office called and said we could stop the meds. There was no infection. A few days passed and mom’s symptoms reappeared. Why I didn’t call the hospice nurse again, I’ll never know.  I wish I had.  All three of us were up all night. Mom, with her need to walk to the bathroom 15 times an hour. Everyone else had to keep watch to make sure mom didn’t fall.  She did fall. By early morning, she was so tired she could hardly keep her eyes open or move her feet, but her drive to go to the bathroom was so intense that nothing else mattered.

This was what her brain was telling her to do last night:  Get out of bed. Go to the bathroom. Sit on the toilet for a few minutes. Go back to bed for a few minutes. Get up again. Go back to the toilet. Sit down for a few minutes. Shuffle back to bed. Wait no more than 3 minutes and get up to go to the bathroom.  You get the picture.

I learned that I should second guess myself sometimes. If it walks like a duck and quacks like a duck, it must be a duck. When an elderly person (with or without dementia) has a UTI, the person can become very confused (sudden change in mental status) and that frequent urge to urinate is also a symptom.  Even though the UA said no UTI, I should have assumed that’s what it is.  I still do think that’s what it is, and am going to push for treatment.

I learned that I need to stop myself from getting tangled up in arguing with mom.  She can’t understand what I’m saying when she’s like that anyway, so why did I do it?  I was so frustrated that I had to say something. She was not the person to say it to.  I should have called a nurse. Or, I guess I could have called someone at the Alzheimer’s Association hotline. They’re there 24 hours a day.  I will do that from now on when I find myself in an unbearable situation. Their number is 800-272-3900.

category: Alzheimer's Disease, Caregiving, Dementia, Hospice     tags: Alzheimer's patient, caregiver, cipro, pyridium, urge to urinate, urine specimen, UTI

We moved mom’s bed into my room so I can help her during the night if she needs anything. So far, it’s allowing me to sleep in my own bed, which is a little bit less stressful than spending the night half awake listening for sounds from the other side of the house. Still, I’m not getting a good night’s sleep.

Mom’s in a stage where she spends nearly every waking minute walking around the house. It makes me very nervous. Right now she’s just left the room, so I have to go reel her back in.

Mom has a doctor’s appointment Friday. I really hope the doctor has some ideas about how to deal with the latest developments. Those include agitation, combativeness and extreme restlessness. This kind of stuff seems typical for Alzheimer’s/dementia sufferers. Sometimes medications can help.

Mom is still using the Exelon patch. A patch is a good thing when dealing with someone who spits out or refuses pills. I’ve kept her on this medication just in case it helps keep her continent longer. She still uses the toilet, although she usually doesn’t wipe and never flushes. I go with her on every trip to the toilet to make sure she gets cleaned up. I have to confess that I probably miss some of the night time excursions.

Well, mom’s finally sleeping, so now’s my chance to watch TV. Yay!

category: Alzheimer's Disease, Caregiving, Dementia, Hospice     tags: Alzheimer's Disease, Caregiving, dementia, Hospice, mom, sleep

Mom’s home. Even though it’s a lot of work, it’s nice to have her here again.

The hospice home people weren’t equipped to take care of someone like her. The other patients were all pretty much bed ridden.  I never saw one of them come out of their rooms. Mom was/is a handful, I have to admit.  She never stays still when she’s awake, and that made it hard for them to monitor her.

Now that she’s home, I can really see how much of a decline there’s been in her mental status. She has lost her verbal skills and she walks very slowly. It reminds me of the “thorazine shuffle.” She still knows who we are. She sticks to us like glue. I have even put her bed in my room to keep her from walking in every 15 minutes while I try to sleep.

Mom has fallen three times since she got home. She doesn’t look down anymore when she walks. If there’s anything in the way, it seems as though she just tries to walk through it instead of around it. That results in falls. So far, she hasn’t been injured, thank goodness.

Well, I’ll fill you in as things happen.

category: Alzheimer's Disease, Caregiving, Hospice     tags: hospice home, patients, thorazine shuffle

I’m sitting with mom, while soft music plays. I just got here about an hour ago. She’s not been eating. I don’t see how she can last much longer.

I’ve asked them to bring her some Imodium. She had diarrhea before I got here. An aid and I put her in the shower to get her cleaned up.

I wonder if her not eating is a choice that’s coming from deep inside someplace?

I can’t stop crying. Nothing can prepare you for a loss of life. Regardless of how much I thought I was ready, I’m not.

category: Alzheimer's Disease, Caregiving, Health, Hospice    

I just ordered a concealed camera to place in my mom’s room. I won’t say much about that, except that it’s motion activated and will store several days of video on its card. I want to know what happens when I’m not here.

When I came to see mom yesterday, she had been confined to a geri chair with the tray on. She had spilled her drink and her left foot was resting in the puddle. Her sock was soaking wet and her foot was ice cold. I placed one of those disposable pads under her feet and took off her socks to dry her feet.

I’ll tell her social worker tomorrow that I want to be notified when they confine her and again when she’s released, along with the reason. I want to make sure her feet aren’t left dangling, too.

I’m here with mom now, and it’s time for me to leave. It’s a sad time. Mom usually cries and I feel terrible about it.

category: Alzheimer's Disease, Caregiving, Hospice     tags: camera, nanny cam