Mom had her dental appointment yesterday. We thought she was going to have to have the tooth pulled that her partial hooks onto, and that it was the source of her infection. It turned out, the tooth was fine! It was her gum above the tooth that was infected. Because she needs premeds for any dental treatment, and had taken them yesterday morning, they fit her in for a cleaning (which was overdue because of all hospitalizations and everything we’ve been through in the last few months). So, Mom left wearing her partial and is now back to a normal diet. The nursing home has been grinding her meats, etc. because of Mom not being able to wear the partial. My husband and his Mom are at the nursing home now, feeding Mom lunch. (Scratch that. My husband just called, and Mom spit her bacon out this morning so they have her in the assisted dining room for evaluation). Some good news was very welcome. Her sodium level is also back to normal.

What isn’t normal is her confusion level and mobility. The nursing home was telling me that she would be released next week because she isn’t making much progress in her mobility and is medically stable. We were supposed to have a care conference this morning to discuss her release. The nursing home rescheduled it because the nurse practitioner wants to order more tests first. She is trying to rule out any possible causes for the confusion. Mom scored a “0″ on the cognitive exam. I know that Mom has dementia (or something), but she is much worse than normal because of her stress level and the unfamiliar environment, combined with being away from me. I am glad that they are trying to rule out other causes, though. I  called and spoke to the nurse practitioner, and she warned me that this may be Mom’s new, permanent, state mentally. I know it’s a possibility, but that’s what the nursing home in January said, and Mom did get back to baseline or better for seven weeks.

I don’t have a clue where her mobility is. The therapists, nurses, and aides are telling me that it changes constantly and that Mom is all over the place. Some days she is up on her walker, and other days she is a tough transfer for two people. It is impossible to tell whether Mom has lost her mobility, or if it just that she is so overwhelmed with the environment and everyone having a different idea of how she should move. I don’t think that there’s anyway for me to assess that until I get her home. Makes it tough to plan ahead!

The new care conference is scheduled for Thursday, March 31st. They plan to release her on April 1st or 2nd to come home. She has the appointment with the urologist to try to determine the cause of the UTIs (including a full bladder workup) on the 1st. I’m thinking that would not be a good day to bring her home, so maybe the 2nd.

Meanwhile, I have been talking to an adult family home that has two people on staff at all times during the day, an awake staff person at night, and is owned by an RN. Having an RN on staff should allow Mom’s nursing home insurance to help with the cost. It also allows them to administer antibiotics through IV, do catheter urine samples, etc. There is a doctor on staff. I’ve talked to them about what has gone on with Mom in the last few months, and they have assured me that these infections could have been handled at their adult family home without the ER visits and hospitalizations. They do not have an opening now, but are anticipating one.

Again, our decision to keep Mom home or place her in an adult family home is coming down to access to decent medical care. There is something very wrong with this picture. Our culture, or society, is just not set up to support those of us that choose to care for our elders at home because they are so important and so special to us. I am sure that all of you that care for a senior have probably experienced this.

I want her home. I want to tuck her into her own little bed, with her own little dog, in her beautiful home. I want her surrounded by her children, grandchildren and great-grandchildren until the very end. I want her to feel safe, and loved, and special. But at what price? I don’t want her to have to go through these hospitalizations and ER visits, or have an infection become a raging infection before I can get lab tests done to confirm it. I don’t want to have to scramble for a bed at a facility after a hospitalization, or have Mom moved to all these different environments that cause her such mental anguish. Short of the seven weeks between infections that allowed my mom to celebrate her birthday at home, none of her life since January has been helpful for her.

Tough decisions. My siblings and I are working well together. I had a long, honest, talk with my oldest brother. He believes that I should look for a long-term placement for Mom, even though he knows she gets great care at home and is happy here, because of the reasons I listed in the paragraph above. He ended the conversation by telling me that he loves me. I realized after I hung up that I’ve never heard those words from him. I know he does, but he’s a man of few words who hides his feelings. There’s also a huge age gap between us (17 years) that has been tough to bridge. I’ve always been the “little sister”.

My fears about the adult family home include 1) knowing how miserable Mom will be away from me and from home 2) running out of money to be able to pay for it 3) having to sell Mom’s house and not having that resource if #2 happens and I need to bring her home again (we have our home, but it is not nearly as functional for taking care of someone with Mom’s level of disability) and, of course 4) her not receiving the level of care she deserves and the guilt I would have about that.

When Mom was in the hospital and I wasn’t sure she was going to make it through, I reached a point of acceptance of that. At that moment, I knew that if that was to be her last day on earth, that I would not have regrets about Mom’s last five years (the time she’s needed 24-hour care) and that is was okay. Somehow, I need to balance all of these decisions so that I can have that same peace at the end of Mom’s life. As of today, I know that I’ve done everything that I can to keep her healthy, happy, and treasured. Maybe I need to rethink everything with that end goal in mind. It just feels like there are so many things working against that goal!

Tomorrow’s project…researching a reclining shower seat/commode and the sling needed to use that equipment.

The things we do for love! Thank you, my supportive and trusting husband.

I’ve been at the nursing home every day, and I think they are taking pretty good care of her. She wants to come home, and asks me to bring her home each time I go. I have been sleeping quite a bit, and cleaning my house (I haven’t been at our house very much the last few months, as I’ve been mostly next door at my Mom’s).

SATURDAY….We were on our way to the big city, and a new ER after the problems we’d had at our local hospital the week before (almost combined Ativan and a sleeping pill, then forgot to give Mom her antidepressant for four days- causing paranoia, etc). So, that was Saturday. We got to the ER at 3:00 in the afternoon. Waited in the waiting room for 3 hours with Mom’s confusion getting worse by the minute. Finally got her in. They ran all sorts of tests, including a CT of her brain. The bottom line was her sodium level was really low (hospital discharge instructions from the week before had told me to continue her low sodium diet because of her hypertension and to push fluids because of all the antibiotics she was taking) and her white blood count was elevated. Mom complained of tooth pain on Friday, and I noticed that one tooth was red above the tooth. Apparently, all the antibiotics she had been on from January until now for the UTIs had kept her “questionable” tooth from becoming really bad. Urinalysis came back clear. At midnight, they told us that Mom would be admitted, but that they had no beds. Finally, at 6:00 AM, they said that there were no beds anywhere in the big city and that we would have to go to another hospital’s ER for Mom to have a chance at a bed. Mom hadn’t slept the whole night. They said she was medically stable after giving her a saline IV drip. The doctor and I decided that it was in Mom’s best interest to take her home to sleep, keep a close eye on her, and then head to another ER if necessary. My oldest brother was with me that whole day and night, which I so appreciated.Hospital in big city lectured me about regular dental checkups (she goes every 6 months) and told me that she didn’t need the low sodium diet and that I was giving her too many liquids.

SUNDAY…Got Mom home from the big city ER. My oldest brother was still with us, and my other brother pulled in shortly after. Together, they got her into bed. She still couldn’t stand at all. Legs like jello. Brother #2 took over while I got some sleep. I slept for 3 hours, then checked on Mom. She was babbling incoherently- obviously much worse. By 3:00, we headed to the ER at the hospital that she had been in the week before. Long story short, my sister came up and I attempted to sleep in my Jeep in the parking lot (didn’t sleep, but it helped to stretch out). Mom was finally admitted to the hospital at 4:00 the next morning. My husband came and picked me up because he didn’t want me to drive after 2 nights of no sleep (and I was already exhausted before that). My sister stayed with Mom. Mom didn’t sleep again this night.

MONDAY…I got to the hospital about 11:00 AM, after 4 hours of sleep. My sister was incredibly frustrated. Mom had not been treated. I talked to the nurse, and they had her down as “observation only”. Daytime doctor came in. I told him about the tooth. The nighttime doctor had looked at her mouth, and said it looked good to him. Daytime doctor took one look, and put her back on antibiotics. Her sodium level had dropped further after the saline drip the night before. Mom was trying to eat her hands, so they put mitts on her to prevent that. I stayed for most of the day, then went home for bed. I left Mom alone in the hospital, which I’ve never done before. I just couldn’t go on. My sister was wiped out (she’d been up the whole night before) and both brothers had to work. Mom finally slept, after 52 hours of no sleep.

TUESDAY…Mom in the hospital still. I spent the day trying to find placement for Mom. It was obvious that I couldn’t take her home yet. She was still hallucinating, and couldn’t bear weight. Mom has “mild dementia” on her diagnosis, and between the dementia and the hallucinations, many of my first picks turned her down. Wow. My sweet, easy Mom who just has mild memory issues! As if the mobility issues weren’t enough to deal with. We finally found a rehab center that would take her, but it wasn’t my first pick. The one where she was in January for 12 days wouldn’t take her. They said they couldn’t make either Mom or I happy. I went in and spoke to them, tried to explain…but they still said “no”. (Brief review of what happened in January. They were very caring and helpful, but the physical therapist said that Mom couldn’t walk because she was unable to walk on parallel bars. Mom’s left hand is “clawed” and she can’t grip.) Again, I went home to sleep and to cry.

WEDNESDAY…Mom out of hospital, and in her right mind again. At this point, she had been in bed since Saturday. She has developed a Level One pressure sore on her bottom. Sodium level coming back up slowly. She was transferred, by ambulance, to the rehab center. Because the hospital record said she had dementia and was hallucinating, they put her next to the nurses’ station with a patient with severe dementia who is territorial and screamed at us whenever we tried to get to Mom’s closet to put away things.

THURSDAY…Mom had rehab today, and was able to stand and walk a short distance with her walker. She got a bath and we had corned beef and cabbage in the nursing home lunch room together. It really was delicious. We went back to her room, and the physical therapist came in to do a full assessment. He was very helpful, and started by asking me to show him how we ambulate at home! The downside was that Mom’s roommate started screaming and went on an hour long rampage about all the stuff in her room. She hit the physical therapist with a Kleenex box repeatedly. I asked for a room transfer, which they did. My sister is with Mom now.

I think that’s it. There’s so much more I could write. This has been the first time that Mom has had a hospital stay where so many medical professionals have blamed it on her home care. I’m much more used to getting praise for the care I take of Mom! It has been the most frustrating experience ever with Mom’s dementia diagnosis. I felt like I had to fight to get treatment because they wanted to brush off the delirium and blame it on dementia.

I don’t know what comes next. I don’t know if I’ll get to bring Mom home, or if we’ll be looking for a permanent placement for her.

She’s not eating much. I tried using Orajel before dinner because her mouth hurts from all the antibiotics, but she still only ate about 5 bites of dinner. I’ve been trying to fix her favorite foods to entice her to eat, but so far, not much luck. One of my brothers is coming on Saturday, and another on Sunday. I can barely do transfers on my own, but it is much easier with two people. She’ll be doing okay, and then decide to sit mid-transfer, so it’s pretty unpredictable right now.

We have a doctor’s appointment in the morning. It doesn’t look like we’ll get a urinalysis done until Monday because the doctor didn’t get the order in for the home health nurse in time. I hope that the infection is gone, and doesn’t build back up between now and Monday. She finished her antibiotic this morning.

The swelling in my husband’s leg is down (they were afraid he had a blood clot) and he also sees the doctor tomorrow.

I tried to focus on feeling more rested and emotionally stronger today. I’m going to bed early tonight, and hoping Mom sleeps.

I tried to call the nursing home admissions coordinator to see if they had openings, but didn’t get her today. I haven’t decided that it is our next move, but I’m exploring options. If we decided Mom needs the nursing home, I’ve asked my siblings to hold me to it and not let me “bust Mom loose” when things get tough. I just want to fix everything for her, and I just can’t. This is way bigger than I am!

Goodnight, all.

Right after I got her under the hair dryer, that changed drastically. She got very panicky, and extremely confused. I gave her the Seroquel that the hospital prescribed for the first time. She fell asleep, but even in her sleep, I could tell that she was agitated. She’s chewed her bottom lip, and her body was jerking. After 3 hours, she woke up. During that time, I got to thinking about the nurse telling me when going over Mom’s medication list during discharge that they had not given Mom her Paroxetine while she was in the hospital (something she’s been taking for several years). The nurse said that it was a hospital oversight. I called her pharmacist, who confirmed that stopping Paroxetine suddenly could cause agitation, confusion, and hallucinations. I then called her primary care doctor, who couldn’t get Mom in until Thursday. She told me to take Mom to the walk-in clinic, which I did. All of this was yesterday. The walk-in clinic doctor told me to stop the Seroquel, and get Mom back on her normal medications (which have kept Mom’s mental status fairly stable).

Mom slept all night last night, but didn’t wake up at her normal time. I woke her up at 9:00 this morning. She smiled at me, and said “Good morning, Mom.” I brushed it off, thinking it was just morning confusion. It wasn’t. All day today, she called me mom. When I’d walk out of the room, she’d start calling for Mom. Per advice from walk-in clinic, I gave Mom Ativan for anxiety this morning. She slept most of the day, but at least it was a restful sleep. I asked her how she was feeling this evening, and she said, “Crazy.” At least there was no paranoia today. Yesterday, she didn’t recognize her caregiver or my husband. She thought my husband was trying to kill her dog.

My heart is breaking tonight. I know that I can’t handle this if it’s permanent. I’ve told my siblings that I want to give Mom a week to see if she can come back from this before we make any decisions about nursing home care.

The hardest point of yesterday was when Mom directed her frustration towards me. She has never, ever done that. I know some of you are dealing with this every day, and I am amazed by your strength. I honestly don’t think I’m strong enough.

Tomorrow is another day.

There was almost no confusion yesterday afternoon. I did keep her in bed, which I had moved into the living room because I expected her to be confined to bed, at least for a while. I learned how to change diapers in bed, with another person assisting. (Because of my mom’s mobility, there is no way for one person to do this.) I lined up extra help for this week so we’d have two people at all times except night. I researched medicine for the hallucinations, and got the prescription filled.

She went to sleep at 8:30, and slept through the night until 5:00 this morning. I gave her tea in bed, and her morning meds. She said, “I want to get up.” As soon as the daytime caregiver came at 6:00, we got her changed and let her sit up on the side of the bed. After a few minutes of sitting, we were ready to try a transfer. She got up on her walker, legs were strong, and transferred to the wheelchair. Got her into her recliner for breakfast. Then she said, “I really need a bath.” (What an understatement.) She’s now had a full shower, dressed and is currently getting her hair rolled. Her mind is clear, she’s cracking jokes, and smiling.

God is so good, and I’m so glad that I didn’t send her to the nursing home like the hospital was advising. I’m also so glad that we are not dealing with agitation, hallucinations, and being bed bound! Thank you all for your caring, prayers, and advice this week. We’re back on track, and going to continue the upward path we’ve been on!

I received Denise’s books and a wonderful coffee mug from my solitaire win (not rubbing it in…but I did win!) It was a great way to start the day. Thanks, Denise, for everything you do for us.

I know that I can’t handle caring for Mom if it doesn’t improve. However, I want to give here a week at home to see what happens, and if she can get back to baseline. This will require two caregivers for all diaper changes. We won’t be transferring Mom out of bed unless things improve. I’ve moved her hospital bed to the living room, and lined up an extra caregiver for the next few days.

The title of this post reflects a combination of my sister’s and my names (Shandi) and now my brothers’ names as well. I am so, so proud of their response this weekend. When Mom was hallucinating on Friday night and my presence was making it worse (she wanted to “bust loose” from the hospital, and knew I was the one that could make that happen), one brother slept with the phone by his side to come up and be with Mom if I needed to leave (in order to calm Mom down). The other brother (the one that didn’t come during Mom’s second hospital stay in January because “he didn’t like hospitals”) came in yesterday morning to hear what the doctor had to say. Mom’s breakfast was there when he arrived, and without me asking, he took charge and fed her. He then blew me away by offering to come spend the night with her one day a week (his idea, not something I asked for)! The miracles continued when he said that, if I couldn’t find a female to help today, he would help with diaper changes in bed today (he doesn’t have to, female family and friends are helping me today). That’s not a line that I want to cross, for Mom’s sake, and my brothers’. But, I was blown away by his willingness. My sister stayed with Mom during the day yesterday (as well as being there for the meeting with the doctor), and then the brother who had been “on call” the night before spent the night. We really, honestly, acted as a unit.

As Mom prayed during her extreme agitation and hallucinations, “Thank you, Lord, for our determination”. We get it from Mom! If anyone can come back from this, it will be her.