12.09.2014

Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease  

     Well, after feeling a bit uneasy on my last post, I went for a visit with my mom a few days ago.  Soon after I arrived, I realized my timing was good!!  The elevator ride up to my mom's floor had a posting of the activities calendar, and I noticed a sign declaring it National Cookie Day!! 

Looks Like I Came on the Right Day!

      I was greeted by my mom and one of the CNAs, Colleen.  The staff was busy keeping the residents out of the way of some heating and cooling workers who were doing some updates throughout the building.  Colleen told me "the old Mary is back" and that she is her old "sassy" self (my mom gave her a look when she said that) and eating and feeding herself.  That was good to hear.  I was glad to see my mom was awake!  We talked a bit, watched some TV, and looked at the Christmas decorations.  When I asked my mom if she still likes living there, she said yes but I was surprised that she seemed to indicate that it was hard for her to make friends there.  At least, that is what I gathered from our conversation.  I can definitely see where it would be hard to make a connection with someone on a memory care floor such as the one where my mom lives.  Now that my mom has lived there for five months, I will try to see what I can do to help her make some connections.  I will also talk to the staff for some insight.  The good thing is, there are always people around.  At her assisted living community, she spent a lot of time alone in her apartment, especially the last several months.
Hanging Out Watching TV
     I also asked my mom what she wants for Christmas.  She said "no more wars".  Then, I asked her if she could think of anything she wanted for herself.  She said a "pinkie ring" and pointed to her finger.  I feel bad because I've noticed that my mom no longer has any of her jewelry on.  We were down to the silicone bracelets and a watch, but I've noticed the staff stopped putting them on.  I am sure with her daily showers, it is difficult to keep up with the jewelry off and on so I'm willing to let it go.  I do think she misses "fussing" with the jewelry more than anything.  If you're used to wearing jewelry and then suddenly don't, you feel like something is missing.  There have been so many changes these last few years. Things have become so simplified.  So few personal belongings with her.  Too many changes to list.  Big things and little things...so many things have changed.
     A bit later, it was time to go the second floor for Happy Hour and the National Cookie Day Celebration.  I don't think I have been to a Happy Hour since the day my mom moved in on July 3rd.  I love that they have a Happy Hour every Thursday.  Only five residents from my mom's floor were escorted down to the second floor for Happy Hour.  I am glad my mom is in the group that still seems to enjoy the social activities.  I talked to Tim, a resident who I learned is there for rehab.  I believe he had a recent pacemaker and defibrillator surgery.  He is a talker and very interesting.  He gives me some insights into the residents and seems mentally aware.  For the record, my mom called Tim a "cookie monster". 
     There was Christmas entertainment, a singer/musician and cookies!!  I don't think my mom has ever met a cookie she didn't like.  The hard part is for her to pick one.  (She wants them all!)  I had to leave soon after the fun began.  It is always nice to leave knowing my mom is being looked after and entertained.
Patiently Waiting for the Entertainment
Things are Looking Up!! 

The Gang

     Behind the scenes, I had telephoned my mom's on-site social worker who confirmed with me that my mom did see a dentist and podiatrist in November (after I had inquired about it at our "care meeting").  Apparently, a dentist visit will be made once/year and podiatrist once/three months.  This is what I was told is covered by insurance.  It used to be more than that, but I don't know if things change because my mom is now in skilled nursing.  I will add that to my list of things to look into.
      I also have a list of items to discuss with my mom's doctor.  Over these last few months, I have learned that I no longer have an Area Agency on Aging care manager.  They used to check in with me on my mom's behalf at least once/month to see how my mom was doing and report any needs or changes.  Everyone is helpful, but they definitely don't spell things out for you when you first move in.  It appears that many of my old responsibilities are now handled by the nursing community staff.  However, I still need to remain vigilant and proactive in overseeing things.  I am still learning my way around the staff and how things work, who handles what, and who is best for my mom, etc...  That last hospital visit was kind of a reminder that I have to be careful not to get too complacent.

 

 

It's Beginning to Look a Lot Like Christmas...

 








12.01.2014

Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
      Before I go on, I have to thank all of you for your nice comments and emails.  It feels good to be validated by the few of you who have been in my situation or those of you who are just nice compassionate people -- you know who you are!!!!
     The good news is, my mom returned to her nursing community after six days in the hospital.  I am relieved she is back in the caring hands of those who have come to know her, but I remain a bit tentative as I was hoping to see more of an improvement in her drowsiness and appetite.  The week in the hospital was another roller coaster ride filled with all kinds of emotions and contradictions from medical staff where at the end of it all I couldn't help but wonder things like what would happen if I wasn't there to advocate on my mom's behalf, if we really needed to be there in the first place or even if we should still be there!?
     I also learned that nurses are my friends.  They were so helpful!!  I was friendly with all of them, and they all enjoyed my mom's demeanor, sense of humor, and described her as "pleasantly confused" and sweet. 
     One thing I didn't mention in my last post was the underlying stress of this whole hospital stay.  You may or may not know that if my mom was hospitalized more than a certain amount of days (10-14 or so), she would be at risk of losing her "bed" at her nursing community.  As I understand it, this is the case in most all nursing community contracts.  I signed the contract when my mom moved in, but never had the time or courage to look up the specific number of days while my mom was in the hospital.  Can you imagine if I had to start over again!?  I really don't know the details of how this works, but I do know I probably would have ended up in the hospital myself if that had happened. 
     This post picks up where I left off in my last post.  If you'd like to finish our week at the hospital with me, please continue reading -- my apologies for the scattered writing, but it was a scattered week!! 
Tuesday, November 18th
     I arrived at the hospital about 11:30 am this time.  My mom had a new roommate (whom I never even peeked at as the curtain was drawn.  When I arrived, I found my mom as pictured below.  She had a heart monitor held up to her ear and was laughing at the TV.  At first I thought she was thinking it was the phone, but soon realized she thought the sound from the TV was coming from this heart monitor.  In her defense, the sound does come from the nearby speaker on her bed...  After sitting with her awhile, I also realized she was pretty alert and also a bit fidgety.  Fussing with her blankets, and the wires for the heart monitor and her gown...  It appeared that feeling better might mean feeling better enough to be a bit more difficult.  She enjoyed the celebrity gossip on the Wendy Williams show that happened to be on.  Eventually I talked to the nurse who was the same as the day before.  There were not too many changes, although she did indicate my mom took an IV out and they were waiting for an ultrasound tech to helps put in a pic line since my mom's veins are so difficult to find (always have been and so are mine). 
Cardiac Monitor...Speaker....L-A-M-E!!
     Around 1:30 pm a girl came in with a food tray and said "Mary"!?  I said yes, but are you sure that is for my mom...she is on a water only diet and I pointed to my mom's care board. She gave me my mom's birth date, but I still questioned it as I had just talked to the nurse a short time before.  The girl left to check and never returned.  I then started second guessing myself and thought, what if it was soft foods and I just refused my mom's first meal in three days!?  So, I rang the nurses station, but our nurse was still tied up.  When another person from the kitchen staff came in for my mom's roommate I asked her about it.  She indicated she had brought my mom breakfast earlier that morning!!!!???  C'mon people -- don't even tell me this!  I'm being told a water only diet and that we are trying to clear her entire system of any blockages and then they brought food!?  Awhile later another nurse told me she was not supposed to get the tray!  I put a call in to the doctor to express my obvious concern!? (The nice doctor from day one seemed to have disappeared and I never did get a return call.)  I have no way of knowing whether my mom actually ate the breakfast or not.  The nurse told me she gave her juice, but mentioned nothing about breakfast...  THIS is why you don't want to leave your loved ones alone at the hospital, especially in my mom's case.
     That afternoon, we got a surprise visit from my aunt and uncle (one of my mom's brothers and his wife) who arrived with some beautiful yellow flowers for my mom.  Around the same time, an occupational therapist also came in and got my mom sitting on the edge of her bed and moved her around a bit.  I was relieved my mom had some company, as I had to leave to meet my kids shortly thereafter.


Wednesday, November 19th
     Things started off okay.  She was again very alert, awake and a bit antsy.  Never really dozed off all day.  At one point I heard my mom say "How Lame...l-a-m-e."  I didn't know what she was talking about, but I looked up at the TV she was watching.  This poor woman on TV was making a craft project.  It was a turkey made somehow with an empty toilet paper roll.  I laughed so hard.  That's what my mom thought was l-a-m-e!!  (I think she was right.)  It wasn't long before things took a bit of a bad turn.  I was told they were doing a "surgery consult" on my mom as they were not satisfied with her progress.  I started freaking out a bit as I was there by myself still and couldn't imagine making that kind of decision alone.  Also, couldn't imagine anyone being there with me before I would end up seeing a doctor to discuss it.  Not long after that, a GI resident came in and explained a procedure they were wanting to do on my mom.  I played "Google Doctor" and learned that the "elderly" do not do well with this procedure.  Initially I very tentatively agreed to it, but reserved more questions for later.  Meanwhile, a tray of food showed up with lasagna, garlic bread, broccoli, salad, ice cream, and drinks.  By now I am so confused and distraught...  I confirmed that she was supposed to now have real food.  I fed her as it was just easier for me to help with the tray and the bed and her IVs...  She ate well, and I was happy about that.  She ate almost everything.  A couple hours later, the nurse and I were happy to see my mom make some progress.  A couple of hours after that the surgeon came in to discuss and perform the dreaded procedure.  I told him that the nurse and I had just learned of my mom making some progress and, long story short, he spoke with the nurse and was pleased enough with her progress that he said would fore go the procedure.  He also mentioned the procedure was very painful and he would only put her at risk if necessary.  (Gee, the lady who came in and talked to me about it was more like, "she will be fine", "it is not painful"...blah blah blah.)  I was relieved, but still knew that if she didn't keep progressing in the right direction I could be seeing that surgeon again.  After seven hours at the hospital, and realizing the doctors were gone for the day I thanked the nurse and went home exhausted. 


Thursday, November 20th
     A new nurse, Kristi, was in my mom's room when I arrived.  She was trying to get an IV back into my mom.  It was not working.  I have to say by this day, Thursday, I was somewhat dreading going in to visit as I knew there would be a new nurse and I would have to update her on everything and give my perspective of what my mom's needs were to make sure she understood what was going on.  Advocating for my mom was becoming exhausting...trying to keep everyone happy.  The night before I had written down all of my notes from what had transpired during the week.  My new panic was that they would try to discharge her too soon without any answers.  I decided I would contact my mom's doctor at her nursing community in the morning to try to get answers.  That morning, I spoke with his nurse who has been very helpful the few times I have talked to her.  She understood my concerns and said she would contact the doctor from their practice who was "rounding" that day at the hospital.  When I walked in, a doctor who was tending to my mom's roommate said, "are you Cindy, Franchesca wanted me to talk to you".  Well, that worked out well.  Walking in and having the doctor and nurse right there, that was a first.  He told me they were pleased with how my mom was doing and that sometimes it is less about the CT scan and more about how my mom is feeling and that she is not in pain.  He checked her and said she did not have pain and her medications were starting to help.  I told him I would feel better if they repeated an x-ray to show whether her GI system had improved since she was originally taken to the ER.  Soon thereafter, they took her for that x-ray. 
     These last few days, I also saw firsthand how difficult it was to transfer my mom from her bed to a wheelchair.  It took two people and she showed very little strength  -- it was difficult to watch.  I actually think the nursing community is more adept at assisting her.
     Meanwhile, my brother was back in town and came to the hospital that afternoon.  I did my best to give him the quick version of all that had gone on during the week as I had not heard from him since the day she was admitted.  He saw my mom briefly and we talked for awhile.  He left a bit later once my mom was being tended to by staff and we weren't able to visit with her for an hour or so.  I learned from the nurse that they were giving my mom a new liquid medication through a cup and straw.  I made an effort to help get as much of that medication into my mom as I could while I was there.  Several people came in throughout the day to try to get blood or reestablish an IV on my mom.  Mostly without luck.  By this point her arms were pretty beat up.  The nurse and I spoke several times and by dinner time I headed out as my mom was getting sleepy.  I believe this was also the evening we got our first bad snow storm and the roads were slippery coming home...


     On my way out, the nurse mentioned my mom was being transferred to another floor.  I took this to mean she was making progress after five days in the "step down" unit, but I was also concerned because there would be less staffing on the new floor.
Friday, November 21st
     I was running late getting to the hospital as I had to deliver something to my kids school at the last minute.  My brother was going to meet me at the hospital at noon.  Remember, visiting hours don't start until 11am.  (I thought about getting permission to visit earlier since I am my mom's patient advocate, but it never really became necessary.)  On my way to the hospital, the same doctor from my mom's nursing home practice called me.  He said they were pleased with the progress my mom had made overnight and that she was eating and not in any pain .  He said they were planning on discharging her.  I asked a few questions and was also comfortable that the best place for my mom was right back in her nursing community.  I continued my drive to the hospital and found my mom in a new room, new floor.  There were no more IVs or meds at her bedside.  She was pretty tired and was mostly sleeping.  My brother arrived soon after.  When my mom's lunch came, my brother tried to help and feed her.  She did ok, but was not as into it as she had been with me the last couple days.  She just seemed tired.  Considering the hospital setting, the two full days where she was very wide awake with me, and everything else, I was glad she was tired as most people would be I imagine!  My brother and I talked and got caught up.  Eventually, I was able to feed my mom a bit more for lunch, and then she was sleepy again.  I talked with a few staff members, including my mom's new nurse who said she was due to be transported back to her nursing community around 4pm.  We left around 2 pm and I finalized some plans with the nurse on my way out.  I got the phone number so I could check exactly when she was discharged.


     In the midst of all that, my mom's nursing community called and needed me to sign some "readmittance" type papers.  That is the other reason I left the hospital.  They also told me that since my mom was in the hospital more than three days, she qualified for rehabilitation.  (Yes, the same type of rehabilitation I was hoping (and praying) she would qualify for when she was having all of her falls.  Rehabilitation is the best "door" to get into a nursing community, but that never happened for us.)  Anyways, they said I could have her put on the first floor for five days a week of therapy.   Or, I could have her sent back to her same room on the third floor and they would send someone to do therapy with her three days a week.  I went with sending her back to her third floor home. 
     As a side note, my mom's new roommate at the hospital that last day had a daughter visiting with her.  I didn't not know much about her situation as I wasn't there for long, but while we were there a doctor came in and gave "the talk".  This was very much like "the talk" I was given about four years ago.  "You cannot be at home anymore."  "We can help you find a nursing facility."  (This lady also required dialysis.)  "Unfortunately, it is Friday and it will be difficult to find someone to process the necessary paperwork, blah blah blah."  "That is, if we can even find a bed in the location you desire."  I literally got tears in my eyes for them.  Been there, done that.  When I left, I felt compelled to say to them, "I wish you the best", to which they wished me a "blessed Thanksgiving".  Sigh.
     That evening, Kristin and I stopped by the nursing community to check on my mom.  It was a nice surprise that the Christmas lights were turned on...for my mom's homecoming!!??

All is Calm...All is Bright
     They had my mom sitting right near the nurse's station and they all said how glad they were to have her back.  I chatted with the nurses for a bit while Kristin took Grandma in the sitting area.  I do feel like this is her new home.  It was very cute, one of the other residents (whose name escapes me) asked my mom if she was in the hospital, and if she was ok, and said she is glad she is back.  It was so sweet.  She seemed very concerned. 


Kristin Gave a Free Massage...
and my mom's concerned friend!!

Dropped Off Thanksgiving Treats for the Staff on My Mom's Floor


Back from the Hospital for Five Days

       As things stand, I am so relieved and grateful that my mom's new nursing community got my mom extra help when she needed it.  They have given my mom such a better quality of life and higher standard of care than I ever could.  I also am sorry to say I have a nagging feeling that I might be missing something with my mom and her care.  I am walking that fine line of knowing that my mom is declining, but wondering if there is something being overlooked that would get her a bit healthier.  Unfortunately, this feeling is not new to me, and I will do my best to work it out by talking with her doctor and nurses.  They are relatively new to caring for her after years of working with her previous primary care physician and neurologist. 
As always, thanks for your support and for following along,
 
 



.

11.18.2014

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!!!!!