Monday Memories With My Mom

The Adventures of Caring For a Mom With Alzheimer's
    It's been two weeks since I gave an update on my mom.  On one recent visit I found my mom sitting with this blanket on her lap.  She was dozing a bit by the TV and we chatted for awhile.  Often if I wake her up from napping she kind of rambles on a bit.  It's as though she's kind of talking in her sleep which, in fairness, she pretty much is.  I kind of startle her awake and this time she told me an elaborate story of how we were working on the quilt in her lap.  She explained how we cut the squares and then we took a break, and then she pointed out different things we did on the quilt.  I couldn't help but think she had been thinking back to some happy memories of her and her BFF, Jane, and how they spent many days working on Jane's quilts at her cottage up north.  

     Speaking of Jane, she was nice enough to visit again in mid October.  She and her husband spend quite a bit of time with my mom on their visits.  Jane calls me and let's me know how their visit went and she speaks highly of my mom's new nursing community and the staff.  My mom is still able to make many connections with her longtime friend as they have made many memories through the years.  Jane even secretly brought her "Muffin" dog (yes there's another one) to my mom so that we would have a backup when we wash "the original" Muffin.  The whole Muffin thing started with my mom and Jane goofing around and being facetious.  Long story.  I wish I had pictures to share of their visit, but maybe she can send some to me if she's reading this.
      Last Thursday my kids had the day off school so we stopped by just before dinner time.   It was the first time I found my mom in her chair when I arrived.  She was reclined and sleeping.  Again, we had to awaken her because...we brought her favorite slushie cherry coke drink.  My son got a kick out of watching Grandma trying to take a sip while lying down. Once I got a staff member to help me sit her up, things went better.  I was glad to meet some staff from the second shift whom I had never seen before.  I'm going to make more of an effort to visit at different times once in awhile.  I think its so important for staff to see and meet us and know that family is involved.  To be honest, I rarely see visitors on my mom's floor.  Maybe more come on the evenings and weekends when I am less likely to be there. I hope so, but I'm not so sure.  It is heartbreaking and amazing to me how easily people give up on their loved ones and family members because it makes them feel uncomfortable.  A little empathy would sure go a long way.  
     Linda, the activities lady saw us there.   She said, "oh, it's my favorite family".  I spoke with her briefly and she actually told me she is dating the umpire guy who was there to talk about baseball that day my mom shared her signal for "you're out". You can read about that here.  I was so happy to hear that they are dating!
       My mom drank about half of her slurpee and then we left so she could rest before dinner.
       Now, at 2:30 am yesterday (Sunday) morning my cell phone rang with the words "Canterbury on the Lake" displayed.  I knew this couldn't be good news.  The nurse on staff said my mom was having significant bleeding and that the doctor recommended she be sent to the ER.  She asked me which hospital.  This is always so confusing to me as they all seem to have their pros and cons and when you don't know what is happening, it's hard to choose.  They recommended a nearby hospital based partially on the fact that they have an Alzheimer's care floor. I hesitated, but agreed as I tried to snap myself back to reality.  She has been there before, but it was just for stiches on one of her falls in the earlier days.
      I woke my husband as I was not comfortable going alone, particularly in the middle of the night.  We arrived by 3:30 am, but they didn't let us see her until they got her settled in. We ended up waiting about 45 minutes and then we found her relatively comfortable and sleeping.  They put her in a nice private quiet corner and said we had just missed the mad rush at the ER a bit earlier.  The nurse was awesome and soon a doctor filled us in.  He was suspecting an intestinal infection, such as diverticulitis.  They were waiting for a CT scan which would show more.  She had a slight fever and was on an IV.  The doctor said she would definitely be admitted.  They encouraged us to go home and sleep and gave us a bunch of names and phone numbers and the nurse promised to update us when her just before her shift was over.  She did call me at 6:30 am and indicated the CT scan found a GI obstruction and that meds and antibiotics were being ordered.  They were moving her to the "step down" unit.  I tried to sleep but was never able to get back to some "real" sleep.
     Of course, it was Sunday -- the weekend.  My experience is that generally speaking a whole lot of nothing much happens at hospitals on weekends.  I will say, the staff was attentive and nice.  My husband and I returned to the hospital around 1pm after we took care of some things around the house.  Before we left, I had also finally reached my brother who I found out is up north deer hunting.  If only I had a nickel for every time he was up north when my mom and I could use some support...but I digress.
Sunday Afternoon
   She seemed in good hands and stable, but yet there were not many answers forthcoming nor did it appear there would be many answers until Monday (today) when the GI and other doctors would be making their rotationsWe left around dinner time so my husband could watch the Lions game.  Of course, the more time that passed without me really feeling sure about what was going on the more uneasy I got.  When you let your mind wander (and start playing Google doctor) it can make matters worse.  That said, I also strongly believe you can learn A LOT on the internet and all in all surfing for answers has worked to my advantage -- knowledge is power! 
     I also started thinking about how they have her on a "water only" diet and I just feel so bad for my mom the more time that passes.  Yes, I do know we can live without eating for quite awhile, but I think most of us (including my mom) would prefer not to!! 
     So, this morning I headed back to the hospital.  It didn't even occur to me to check on visiting hours.  (Remember, I am used to Emergency Rooms and not often being actually "admitted", so it didn't even occur to me to check.)  I was surprised that visiting hours were 11am - 8pm.  I arrived before 10am and ended up having to wait for visiting hours.  In the meantime, I found out she wasn't in her room anyways, she was having a test.  So, I chilled until 11am and when I went up to her floor she was still out for testing.  Sooo much waiting.  Times like these I am thankful for my phone and social media.  I have killed so much time surfing on my phone while waiting and waiting. 
     In the meantime, I spoke with my mom's nurse and told her I was hoping to talk to the doctor, but the GI doctor she said had already come and gone (of course).  This "game" of trying to gain information at hospitals is never fun.  However, I will say the staff was very accommodating and personable, and I am very aware that saving people comes before talking to me.  The main goal right now is for the doctors to clear her digestive tract so that they can thoroughly evaluate the cause of the bleeding and determine if there is any infection.  Meanwhile, she was also found to have another UTI and an infection in her mouth (thrush).  (My mom also has lupus which compromises her immune system -- something we rarely talk about anymore as her dementia mostly over shadows her other health issues.)  She is on antibiotics and receiving various treatments in an effort to clean out her system.  In all likelihood, this would all go faster if she was able to walk.  Sadly, that is no longer much of an option.  In fact, earlier in the day the nurses had tried to get my mom standing with their support and she was too weak to even do that.  As I've said before, the wheelchair and not walking are sooo hard for me to get used to.
Monday Afternoon
      My mom is groggy, but seems relatively comfortable.  She is stable, and I feel comfortable with the attention she is getting in the Step Down unit.  (My understanding is the Step Down is a "step down" from ICU and at this hospital they share the same floor.)  A nice doctor came in specifically to talk to me.  He gave me a good overall update, was very personable and understanding of how difficult it is to be in my position.  He basically told me she would be there at least 4-5 days and that it was normal for things to take awhile to happen in this case.  I am still kind of processing everything myself as this is one of the first times my mom has been in the hospital for something not related to a fall in years.  It was definitely a bit of a shocker to hear from the nursing community in the middle of the night as I know she receives such good care there.  I am now learning that there is yet another complication that can occur in people with dementia and this is likely one of them. 
     That nice doctor even called me this evening when he completed his rounds.  One thing he mentioned is that they now have reason to believe my mom has had this issue for months...like six months!!!  I am shocked, but I am trying to focus on how much better she will have to feel once they treat her!!  My poor mom has likely been in pain for some time and yet not able to communicate it to us. 
     While I was there, she kept fidgeting with her oxygen while trying to sleep.  She took it off a couple of times and I just let it go the last time.  When I was leaving, she spent about ten minutes trying to get the oxygen on Muffin.  She hasn't complained once and has not even said she is hungry.  She drinks water when I give it to her and seems content despite being in pain and out of her comfort zone. 
Muffin Getting Oxygen
      I don't think there is any question at this point -- my mom has some Energizer bunny in her (ya know, she keeps going and going...).  I am proud of how her sense of humor shines through in even the most difficult of circumstances.  She has an inner strength, she is brave, and she is a real trooper!!!!!





Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     Last Tuesday I stopped by to visit my mom.  I did not go at lunch time, but when I arrived they were in the midst of making their own personal (biscuit dough) pizzas.  I sat with my mom and joined in while they each waited for their pizza to be baked.  Since there is no oven on their floor, the activities lady had to do each one on an electric grill.  I helped a little bit passing out napkins and drinks and just trying to keep everyone entertained while they were waiting. 
     There is one gentleman currently on my mom's floor, Tim, who is actually an overflow from the rehab floor so his mind is much better than the other residents on the memory care floor.  I chatted with him for a bit and he is quite a character  My mom shared her pizza with me and it was good, but some of the residents complained and were being picky about things.  I think it was one of those things where there was no making them happy, and I felt bad for Linda going through a lot of work to try to make them happy!  I guess the residents  cook or make things a few times a week.  I found the whole thing reminiscent of my kids preschool days.
     Once the baking was done, Linda got everyone involved in some trivia.  I decided to stick around and visit with my mom.  I have sat in on several of their trivia sessions before.  She gives hints on famous couples or different topics and waits for the residents to piece the answers together.  They actually do pretty well.  Sometimes it's hard for me to keep my mouth shut when I know the answers, but some are hard and I don't have a clue!  Some of the answers are people like Abbott and Costello or Fred Astaire and Ginger Rogers, etc...  My mom does pretty well as I've said before, but I realized on this visit that I think her favorite part is watching Linda "imitate" and do voice impersonations of the people she is describing.  My mom says, "she's so cute" or "she's so funny".  I even think, just knowing my mom, that sometimes she actually knows some of the answers but holds back on shouting them out because she likes watching Linda do her impersonations so much!!  You can just see the "wheels" spinning in their heads, sometimes smoke coming out of their ears, and it's fun to see them finally make the connection!!   I stayed with them for a couple of hours.  There were only about eight residents participating.
      Afterwards, I wheeled my mom back down to the sitting area just outside her room. 

     She tried to feed "Muffin" her mini Teddy Grahams snack.  When I have to leave, sometimes I just tell her I have to go let out my dog, Lucky, because he isn't trained as well as her dog, Muffin.  She thinks that's funny and important that I go and let him out.  She also understands when I often have to leave to pick up my kids.  I am thankful she usually does not give me much of a hard time when I have to go. 

So, I turned on Ellen for her (which she loves) and was on my way.

     On the afternoon of Halloween I received a call on my cell from her nursing community.  My heart still sinks, but so far the calls have normally been something relatively minor or something they want to make me aware of.  Thankfully, it was one of the nurses who said my mom was "fine" and having a "really good day".  My mom had already passed out candy to several children who they had come through.  Apparently, my mom told the nurses and CNAs that she thought it was "way cool" and they got a kick out of that.  They had a busy day of activities planned, and the nurse talked to me for quite awhile about her own mother and how she is gradually declining in ways similar to my mom.  She acknowledged how different it is when it is your own family member rather than being a nurse with a patient.  She was temporarily working on my mom's floor for a couple of days, but normally works on the second floor.  They noticed bruising on the bottom of my mom's legs and they think she must be bumping them on the foot rests of her wheelchair.  They wanted to let me know they are going to try to come up with something so she would not be able to bump them as much!!!!  These kind of calls I would take anytime!
     Later that same Halloween night I was able to sneak out to dinner with my husband as all of my kids were at parties and the few trick or treaters we had were long gone.  During dinner, my phone rang and it was my mom's nursing community again.  This time I was definitely apprehensive because I had already spoken with the nurse earlier.  It was the same nurse and she regretted having to tell me that my mom had fallen out of her wheelchair while it was parked near her bed.  She was left there just before they were going to put her to bed, and we think she must have decided to try put herself to bed.  In fact, my best guess is that because she was having such a good day, she must have been sitting there thinking, "what am I waiting for, I should go to bed"... and then fell.  There was no visible injury, they checked her vitals, not sure if she hit her head, but no evidence of it.  While on the phone, the nurse decided we should put in her "care plan" not to bring her to her room until she is ready to be put into bed in an effort to prevent this from happening again.  Also, the staff will likely be in touch with me now that she has had a couple slips and falls out of her wheelchair to try to come up with a solution.  
     I am grateful they seem to be doing their best taking care of my mom, and also seem to want my opinion on her course of care.  I certainly wish I could ended the day with the good news of that first phone call, but the reality caught up to us that night when she fell. 
     Meanwhile, the seasons here in Michigan are definitely changing.  As I walked back to my car and saw these beautiful Fall trees, I realized how very cold my walk is going to be on my visits in the months ahead.  Hope we can hold on to Fall at least a little longer!