Homeward Bound

Mom is going home to CB today. I think she will be happy about that. A and I conferenced with the Palliative care team today. They have recommended that Mom be evaluated for hospice. We are not sure if Mom's sharp decline is from the UTI or from a progression of her dementia. In either case, it will be helpful to have another resource to help make her comfortable and add some quality to her life. The palliative care doctor believes that Mom is having some problems with swallowing which may or may not be related to her UTI. It's most likely related to her dementia.

How am I with all of this? Shocked, stunned, relieved, worried, sad. I realize that having hospice involved does not mean that the end is imminent. I learned that from watching my dad who lived months after he went into hospice. It has happened so fast with Mom though. She still needs to be evaluated but I think they will find that hospice is appropriate for her. And that makes me sad.

One Day at a Time

I visited Mom tonight and she is making progress. Her eyes were clear and she seemed engaged. She could answer some of my questions and I was able to get her to drink some water through a straw. I could even see a flicker of her sense of humor while we watched Seinfeld - she rolled her eyes at some crazy thing they did. She didn't tear up until I put my coat on and started to leave. I told her that it was important for her to rest and I would see her tomorrow.

Tomorrow my sister and I will have a teleconference with the palliative care coordinator at the hospital to help plan for the future with the goal of keeping Mom comfortable and maintaining her dignity.

Life is like an Amusement Park Ride

Mom's mood has been like being on a roller coaster. Up and down, happy, teary. Agitated, calm. She keeps asking when she can go home. I try to distract her with a hand massage or a game and that seems to work for a while. Television programs will agitate her. Today she was watching "Little House on the Prairie". It was an action-packed episode about a runaway train. Mom was agitated and upset so I changed the channel to a comedy and she calmed down. But I'm not sure how to answer the "I want to go home" statements. It must be frustrating to be told that you are already home so I just try to make her feel safe and comfortable instead. There should be a college course on caring for the person with dementia.

I'm also worried because I was never able to obtain a follow-up specimen to make sure that her UTI is gone. I feel like such a poor caregiver because I don't want to upset her so I choose the path of least resistance.

I think the antibiotics are helping alleviate some of Mom's confusion. She seems to be back to herself and has more interest in doing things. She's sleeping through the night too, which is good for both of us.

It was a beautiful day today so we sat outside and watched the WWII planes fly over (there was an airshow this weekend at a local airport). Those planes are LOUD! But it was fun to watch them fly.

I'm sad that summer is winding down. I know it's only August but already the sun is setting earlier in the evening and rising later in the morning. The Minnesota State Fair, which is a big deal around these parts, starts later this week. I haven't been to the fair in over 15 years. I just am not that into crowds.

Yesterday was my uncle's birthday. Happy Birthday! Lucky guy shares his birthday with Madonna.

Lily's calcium level is back to normal! Yay! We will continue to monitor it annually. I'm so relieved.

Mom is back on antibiotics. Yup, another UTI. I had to follow up with the clinic to find this out. No one ever contacted me after nearly a week. I was very angry and I let them know it.

Alzheimer's Sucks!

It looks like the room will be available for move-in in September. That will give my sister a chance to get my nephew off to college in August. Perhaps it will be just in time for the Republican National Convention. Mom is sometimes sleeping through the night. Last night she fell out of bed at 3:00AM and my saint of a neighbor Mary came over to help get her back into bed. I put the bed rail up when I got home from work. Hopefully this will be the last of the falls from bed.

Everyone tells me not to mention the impending move to Mom until the day she is dropped off. This is hard for me, but I will follow their advice. They tell me it is going to be hard, probably the hardest thing I will ever do, but it must be done. I hate this disease and the dignity and independence that it has robbed from my mom. She is in distress most of the time; weepy and crying, angry and depressed. And she has every right to be so. I only hope that she can find some peace and joy in her new surroundings.

I'm tired. I had kind of caught up on my sleep. I need a few good nights where I sleep through the night without any interuptions. And guess what? Mom is very incontinent so once again I am trying to get a urine sample. I have no time to pick up the supplies or collect the specimen and drop it off. I need a helper. Desperately. The only indication that it might be a UTI is the fact that she is soiling right through her Depends. Several times per day. Does that indicate a UTI?

Today the afternoon aide and the PT were able to collect a specimen from Mom and I dropped it off tonight. Cross your fingers that it comes back negative. The aide said that Mom was in a great deal of pain today and did not want to go to the bathroom. Mom was upset and called the aide a bad epithet. This upsets me because this is not characteristic of my mom. She's always been a very gracious woman. I suppose it must be hard to have to be helped in the bathroom and perhaps she is just voicing her frustration. Afterward, the aide said Mom had returned to her usual, sweet self. I am so grateful to the aide and to the PT for taking care of this for me.

I cannot believe that next Monday is Memorial Day. It seems like I spend all winter waiting for spring and summer. I savor every minute of these seasons. But before you know it, spring and summer are over.

Today was a cool, cloudy day. Our crabapple trees are blooming and they are beautiful. I bought an Endless Summer hydrangea. It's so pretty. I'm not sure if I will plant it or leave it in a container.

Caregiving...It's not for Sissies

This is getting harder to do. Mom has so much trouble walking, I think if anything, that is going to be the major reason for placement for her. It is such a struggle to get her to and from the bathroom; getting out of the house is nearly impossible. Plus I have to obtain another specimen to make sure the UTI is cleared. I don't want to be desperate when the time comes to move her. She is going to hate it and be mad at me and I have to work up the courage to face that. And I have to work up the courage to live by myself again and get on with my life.

Our weather has been gorgeous these last few days. This morning there was a beautiful red cardinal at our feeder and last night there were hummingbirds zipping around our neighbor's patio. We also see lots of goldfinches and have even seen a bluebird.

I've been trying to 'embrace the suck' this week. At work. Things at home are fine. I don't know why I bother talking to my management, they just make me feel worse about myself and my job. I have to stop letting them do that to me. I have enough to keep me occupied without having to deal with them too. You see, I've had several bouts of depression and during the last bout I wasn't a model employee. Looking back I realize that I should have gone out on disability; live and learn. Anyway, my management won't let me forget that. But I have to move on and try to do the best job I can now that I feel better. I have problems with concentration which doesn't exactly lend itself well to my job. And the fact that I am a caregiver doesn't make things easier.

Mom is having a good week. She's mostly sleeping through the night. I need to pick up stuff for another urine analysis to make sure that the antibiotics worked. She seems to be better. I think that the sunny weather helps too.

I was able to get nearly a full night of sleep last night. Mom only woke up once; with an accident, the one downside of antibiotics. It felt good to sleep for 7 hours. And today is a beautiful day! Sunny and warm. I hope this means that spring is finally here. Mom is napping for the first time today. She got herself up and out of bed on her own this morning, either I was too tired to hear her or she was capable and didn't need help.

Another UTI

Mom's PT called today. She said that Mom was weak and didn't want to do her exercises this week. She suggested that Mom might have a UTI and sure enough, after taking her to Urgent Care and testing a specimen along with blood work to make sure she wasn't anemic or something else, she does. She's now taking an antibiotic and hopefully it was caught soon enough so that she won't have to be on multiple courses. I'll bet this explains her restlessness from the other night. The UC doc was a male and Mom liked him. She's so anti-male doctor, but she always likes them when she gets them.

It has been raining very hard here today, all day. And it is cold. Not the best time to have to take Mom to the doctor, but it worked out OK. Tonight I said to Mom, 'it's pouring rain outside again', and she said 'I don't care, I'm inside nice and warm'. My crocuses are blooming and the grass is really getting green. The trees are leafing out and my allergies and Mom's are kicking in. I don't care, I'm so ready for spring.

Annie has given me something to look into regarding Mom's sore ankle; she said that the side effects of cipro, an antibiotic that Mom was indeed given during the UTI she had, can be a ruptured achilles tendon. I don't think that it is that serious, but I wonder if the antibiotic did some damage to her tendons. I emailed Mom's doctor about this so we'll see what she has to say. Along with the pain, Mom also has some snapping and popping that can be heard as she walks. Thank you Annie!

I have to go to work tomorrow :( I'm not looking forward to it. But it's only one day then I have one day off, New Years!

Olivia had a sneezing fit this afternoon. It startled both Mom and me. Mom was upset and started to cry thinking there was something wrong with her. She seems OK though. I took a picture of Lily crouching under the tree next to my Pretty Little Mistakes book.

Today was a good day. We met with both the nurse and the social worker for the home health agency. I was very impressed with the both. The nurse took Mom's BP (102/70), pulse, listened to her heart and lungs and then checked her skin for issues. She spent quite a while here. If the aides are as good as everyone else at this place then everything should be fine. Mom had her coumadin level checked today too. It was really high due to the bactrim that she was taking for her UTI. We have to stop the coumadin for the weekend and then re-check on Monday. I think that I will work from home that day. Tonight Mom's appetite seems to be back. She had several small slices of pizza as well as several small meals throughout the day. I bought a blueberry-pomegranate juice that she just loves. She drank several glasses of that. And best of all, I got a urine sample and dropped it off at the lab.

While the nurse was here today checking over Mom, Olivia watched her like a hawk. She would jump up on Mom's lap frequently too. It was like Olivia was making sure that no one was messing with Mom. What a great little kitty.

It was a windy, gloomy day today. Tomorrow is supposed to our first peak at the sun in about a week. If the sun does come out I plan to take some pictures of the lovely red maples that line the street on the way into our neighborhood.

Mom's UTI still has not cleared so we have started another course of antibiotics. Guess it's time to break out the yogurt again. I hope that this round clears it up. Poor Mom. I have to be more diligent with making sure that the specimen is taken 48 hours after Mom finishes the antibiotic. She seems to be more upbeat tonight. Tomorrow she goes to the day program. I hope she has fun. Her nose seems a little stuffy tonight, I hope she hasn't caught a cold. There is one going around.

I made an appointment for our flu shots. The soonest that we could get in is Oct 26. That should be soon enough I hope.

The weather has cooled off nicely. It was a cool, crisp autumn evening, perfect for a fire. I'd love to have a chimenea on the patio.

Lily has been talking. She's part Siamese so this is not unusual. She has always been a chatterbox and will hold a conversation with me. Olivia has not been a talker, but I think she's learning from Lily.

It's too hard to do this today. First I had a humongous migraine which only lessened after I took a nap at lunch. Then as I was driving home the tire pressure monitoring system light was on. Took the car to have it checked; there's a screw in the side of tire where the rubber meets the road. Luckily VWs come with a full sized spare but now we have to buy a new tire. Got home and Mom had a mess in her pants. Got that all changed, got her as cleaned up as possible then sat down to relax. I obsess about whether Mom is clean enough, especially after the whole UTI thing. Speaking of that, I have another urine specimen to drop off at the lab, when will I have time to do that with my 6:30 to 5:00 schedule?? I need an assistant. I lost it tonight and just let the tears flow. I felt better afterward. Remember to take it one day at a time. But it's so hard. There is nobody to really confide in on a day to day basis. I try to keep it inside at work.

The days are getting shorter; it's dark by 7:00 and no longer light when I drive to work in the morning. I don't like winter and shorter daylight hours. Time to move to the equator.

Flinty is right, things come in 3s. I hope in this case, they don't.

Mom fell out of bed again last night around midnight. This time she was able to get up and back into bed on her own. And she was laughing. She doesn't seem to be hurt and this morning, she remembered the incident and laughed again about it. Don't ask me how someone who sleeps in a king sized bed can possibly run out of room, roll over and fall out. She sleeps on the edge. I really think that UTI took it's toll on Mom and now she is feeling lots better.

She was emotional about the day program yesterday when I got home but she said it was better than sitting around the house all by herself. On Monday they are going swimming, which she loves.

Mom finished up her antibiotics yesterday. I hope that the UTI is cured and that the diarrhea will now cease and desist. I think some relief from that will do us both a world of good. This morning I had to strip Mom's bed and wash the linens because of an accident. I also scrubbed down her bathroom with Mr. Clean. This routine is getting very old as she gets very upset and emotional about it. Something in her childhood must have affected how she views this because she now thinks that she is unclean when this happens. Baggage sucks.

It is a beautiful day here today, sunny and in the 60s. Lily and I are laying in front of the sliding glass door enjoying the cool breeze. At least until Mom pages me and demands that I spend every waking moment with her.

My uncle called today. He is thinking of bring my mom's sister, my auntie, to visit at Thanksgiving. In fact, he's kind of looking at it as a family reunion. His son and daughter are thinking of coming and he suggested asking my brother and sister and their families. That would be fun! We haven't all been together in a long time. I hope we can swing it. Aunt Mary Ellen, Mom's sister, has Parkinson's. She is pretty with it cognitively but like Mom can no longer drive and has difficulty walking. I will need to get going on the ramp at the back door and perhaps railings at the front door.

Well, it's set up for Mom to try daycare on Tuesday at 8:30 am until about 2:00 pm. I hope everything goes well. I'm going to try to work from home that day so that I can be there in case. Mom has been asking about it, and about the woman and seems to want to be with her. I hope Mom doesn't throw a fit though when she sees that Joyce is just going to pick Mom up and take her to the center and then bring her home later. How can I turn off my worry about this? And why am I worried so much about this? If I had a kid, and I dropped them off at daycare would I worry and obsess about it this much?

Also, Mom's appetite seems to be back. She is actually asking for lunch and dinner nowadays. It must have been the UTI that killed her appetite, or else this is just part of the rollercoaster ride that is AD.

They x-rayed both of Mom's hips and the appliance in the right hip was just fine. That is good news. The doctor said Mom has two choices; become less ambulatory or have a hip replacement on her left hip. At first it sounded like Mom might consider the hip replacement. But then she wavered and decided against it. I told her we could think about it.

She seems better since taking the antibiotics. I guess it's true that a UTI causes more confusion in the elderly. Tonight she said that she would like to have someone come be with her during the days when I am at work. I got a name from my therapist of someone that her family used for her mom and they really liked this woman. I'm thinking of calling her. Or I could call the ex-police officer. That woman would just provide companionship though. Her card sounds like she doesn't do a lot with people who have memory loss, but it can't hurt to ask.

I ordered a Hoover deep clean steam vacuum that can clean both carpet and upholstery. It had 300 reviews on Amazon with an average of 4 1/2 out of 5 stars so I figure it must be pretty good. The price seemed reasonable and shipping is free so I'll give it a try. It hopefully can help get up some of the stains from Mom's bed into the bathroom. Luckily this is only about a 4 foot space. It might also help to clean the upholstery on Mom's chair.

UPDATE: I've emailed the ex-police officer. I'll see what she says in her reply. Meanwhile Mom is up and about after wanting to go to bed at 8:30 tonight.

Mom's UTI has not cleared up so the doctor is prescribing Augmentin for 3 times/day for 10 days. If it still doesn't clear up then we need to make an appointment with a urologist. I hope it clears up. Am debating about whether to start up the home health care aide. Allyson thinks Mom will resist it after having witnessed Mom's reaction to the mere suggestion. She thinks a better idea is to call a woman who works as a companion. She might be right. It's sure nice to be able to use Allyson as a sounding board and for advice. It makes me feel less alone in this.

UPDATE: I talked to Mom's case manager/RN at Homewatch and she said that clean catch urine specs are hard to get no matter how careful you are with the elderly. She basically said that Mom might not have a UTI, it might just be contamination from the area. Hmmm.