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).
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!!??
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.
.
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!! |
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...
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,
.
3 comments:
I'm so glad your Mom is back to her 'home'. I can so relate to all that you said as I went through this with my Mother five years ago. I was her advocate and often a very frustrated one, trying to see that she had good care and even someone to look in on her while at a nursing home. She was there about nine weeks as she passed away 11 weeks after her last stroke. However, I would do it all over again to be sure she had the care she needed! She was a precious lady - just like your Mom. Thanks for sharing!
Good Morning, I can relate to so much of this even though my hubby doesn't have what your mom does. When my hubby goes to the hospital, I am there 24/7 because I sign for his health care. Each state must have their own rules and regulations for the nursing homes. We have state inspectors in right now. The state nurse is there and going to talk to every one one on one. It does put a lot of stress on you, My hubby is an only child so there is no one to share the load, but the kids do listen as my sounding board. I have learned which nurses and aides I can talk with to get the information I want. I keep praying for you wishing for a miracle. Take care. Hugs and Prayers from Your Missouri Friend Shirley
I'm glad your Mom is home and doing good. You have had quite the journey. I can't imagine how you hold up through all this, but I do know we will do what needs done for those we love. I've always said that the more time you can spend with loved ones that are in the hospital, the better their care will be. The staff knows you're there and you expect them to know their job. Many times there is not enough staff to go around and having a second pair of eyes and ears is important. I hope your Mom continues to stay well. I know her condition is delicate and I'll keep your family in my prayers. Take care Cindy!
Post a Comment