The Adventures of Caring for a Mom With Alzheimer's Disease
So let's review for a minute. Beginning last summer, I fought hard with the Med Team staff when I realized how many of my mom's services were not being provided or not being provided properly. In November, my mom was given a private aide every morning, seven days a week, Sheri. My mom did not experience any falls or medical problems during Sheri's morning shift. My requests to increase Sheri's hours were rejected. My mom fell at least eight times and was sent to the ER about six times from December to June. To be honest, I've lost track even though I have notes of each incident. Along the way, it was determined my mom has fluid on her brain likely causing her to lose balance and possibly indicating normal pressure hydrocephalus. NPH is treated by putting a shunt in the brain. The weeks of NPH tests were inconclusive and it was suggested that I have the tests repeated in September. Meanwhile, I have been getting to know the staff in the Emergency Room and living on pins and needles between emergency calls. Along the way, an emergency room doctor and the new neurologist have strongly suggested my mom needs a higher level of care. A higher level of care would be a skilled nursing community (a/k/a nursing home). Over the last few months, particularly in April and May, I was beginning to feeling desperate to get my mom to that higher level of care. It had become clear that I would not get insurance approval for more hours for Sheri or another private aide and 24/7 nursing and medical staff are not available at her assisted living community.
Obviously, life does not always go the way we plan or imagine it. In my mind, I had imagined and even sometimes hoped to keep my mom at her senior living apartment until she reached a stage where her memory prevented her from recognizing the people still close to her or she lost her ability to walk. I thought if we ever had to move her, she would be at a stage where most people and things were no longer recognizable. In my mind, that meant she would be at a point of being mostly bed ridden. Never in my plans or imagination did her frequently falling, yet still being somewhat able to walk, enter the equation. I don't know why, it just didn't. I also imagined me staying with my mom overnight more often and perhaps having a visiting nurse or hospice care as necessary in her apartment. I should know by now that things don't always happen as you imagine and only God knows the plan.
Many people are not aware that when considering placement into a nursing community, typically it is not just a matter of driving down the street to the prettiest, closest, best looking, best staffed nursing home and saying I'd like my mom to live here please. Nope. Also, of course, the prettiest, closest, best looking, also does not always provide the best care either. It takes time, and visits, and phone calls, and forms, signatures, research about insurance, etc... There is most often a wait involved -- at least there is around here. From what I am told, there is also a bit of a game to be played. You see, if during one of my mom's falls she actually broke a leg or hip or whatever, she would be hospitalized, likely for more than three days. Her insurance would kick in and then she would likely need short or long term rehabilitation to regain her strength and walking abilities. She would eventually then be transferred from the hospital to a nursing community that offers rehabilitation and stay there for whatever number of weeks until it is determined whether she could return home (her American House senior community) or would require a long term stay in a nursing community. For my mom, those things didn't happen. My mom just kept falling and going to the ER but was never seriously injured enough to be admitted. Thankfully, never breaking a bone. This was good news and bad news because, we were in a race of sorts.
It became a matter of which was going to come first, the chance at a relatively smooth transition into a skilled nursing community OR a tragic fall serious enough to require a hospital stay, rehabilitation and likely then transitioning into a long term stay!?? None of these scenarios is what anyone wants, but factor in my mom's severe dementia with a serious injury and then the consequent move into a rehabilitation and it would become the worst case scenario.
Desperation definitely started setting in. I cannot remember feeling truly desperate for many things in life. (I can literally hear my girlfriends laughing at that one!) Truly though, this quickly became a situation where I was feeling desperate -- for my mom and me. It was, "please don't make us wait for my mom to get seriously injured before we can get her into your nursing community". The truth is, it's easier if you get injured first.
Contrary to how it may have appeared here on the ol' blog, I was very aware a skilled nursing community could also be in my mom's future. I had the lists of places, I had done some homework throughout the last few months and years. There were two or three that I was interested in, primarily by "word on the street" and proximity to my house. I quickly knew my number one choice and so I focused on it and followed this timeline:
Behind the scenes, my kids were busily wrapping up their school year, graduating from middle school and Jacob and Kristin had just had their birthday the day before that last ER visit. To say things were busy would be an understatement. Meanwhile, knowing my mom had no idea what I was planning for her, and I had no real intention of telling her. The whole situation was a bit overwhelming and the sense of responsibility was not something I took lightly. So now although there was the initial excitement of finally knowing I could get my mom to a place where she could be safe -- it quickly turned into the pure dreaded reality that had been looming over our heads all along. All of this meant my mom has declined to the point of needing this 24/7 care and the added element of not knowing how she would respond to the changes in her living situation made me nervous.
So let's review for a minute. Beginning last summer, I fought hard with the Med Team staff when I realized how many of my mom's services were not being provided or not being provided properly. In November, my mom was given a private aide every morning, seven days a week, Sheri. My mom did not experience any falls or medical problems during Sheri's morning shift. My requests to increase Sheri's hours were rejected. My mom fell at least eight times and was sent to the ER about six times from December to June. To be honest, I've lost track even though I have notes of each incident. Along the way, it was determined my mom has fluid on her brain likely causing her to lose balance and possibly indicating normal pressure hydrocephalus. NPH is treated by putting a shunt in the brain. The weeks of NPH tests were inconclusive and it was suggested that I have the tests repeated in September. Meanwhile, I have been getting to know the staff in the Emergency Room and living on pins and needles between emergency calls. Along the way, an emergency room doctor and the new neurologist have strongly suggested my mom needs a higher level of care. A higher level of care would be a skilled nursing community (a/k/a nursing home). Over the last few months, particularly in April and May, I was beginning to feeling desperate to get my mom to that higher level of care. It had become clear that I would not get insurance approval for more hours for Sheri or another private aide and 24/7 nursing and medical staff are not available at her assisted living community.
 |
| The thing I needed most was right there on my Mom's bracelet...FAITH the bracelet my daughter, Kristin, made for her Grandma... |
Obviously, life does not always go the way we plan or imagine it. In my mind, I had imagined and even sometimes hoped to keep my mom at her senior living apartment until she reached a stage where her memory prevented her from recognizing the people still close to her or she lost her ability to walk. I thought if we ever had to move her, she would be at a stage where most people and things were no longer recognizable. In my mind, that meant she would be at a point of being mostly bed ridden. Never in my plans or imagination did her frequently falling, yet still being somewhat able to walk, enter the equation. I don't know why, it just didn't. I also imagined me staying with my mom overnight more often and perhaps having a visiting nurse or hospice care as necessary in her apartment. I should know by now that things don't always happen as you imagine and only God knows the plan.
Many people are not aware that when considering placement into a nursing community, typically it is not just a matter of driving down the street to the prettiest, closest, best looking, best staffed nursing home and saying I'd like my mom to live here please. Nope. Also, of course, the prettiest, closest, best looking, also does not always provide the best care either. It takes time, and visits, and phone calls, and forms, signatures, research about insurance, etc... There is most often a wait involved -- at least there is around here. From what I am told, there is also a bit of a game to be played. You see, if during one of my mom's falls she actually broke a leg or hip or whatever, she would be hospitalized, likely for more than three days. Her insurance would kick in and then she would likely need short or long term rehabilitation to regain her strength and walking abilities. She would eventually then be transferred from the hospital to a nursing community that offers rehabilitation and stay there for whatever number of weeks until it is determined whether she could return home (her American House senior community) or would require a long term stay in a nursing community. For my mom, those things didn't happen. My mom just kept falling and going to the ER but was never seriously injured enough to be admitted. Thankfully, never breaking a bone. This was good news and bad news because, we were in a race of sorts.
It became a matter of which was going to come first, the chance at a relatively smooth transition into a skilled nursing community OR a tragic fall serious enough to require a hospital stay, rehabilitation and likely then transitioning into a long term stay!?? None of these scenarios is what anyone wants, but factor in my mom's severe dementia with a serious injury and then the consequent move into a rehabilitation and it would become the worst case scenario.
Desperation definitely started setting in. I cannot remember feeling truly desperate for many things in life. (I can literally hear my girlfriends laughing at that one!) Truly though, this quickly became a situation where I was feeling desperate -- for my mom and me. It was, "please don't make us wait for my mom to get seriously injured before we can get her into your nursing community". The truth is, it's easier if you get injured first.
Contrary to how it may have appeared here on the ol' blog, I was very aware a skilled nursing community could also be in my mom's future. I had the lists of places, I had done some homework throughout the last few months and years. There were two or three that I was interested in, primarily by "word on the street" and proximity to my house. I quickly knew my number one choice and so I focused on it and followed this timeline:
May 7th - Called and Toured skilled nursing community and was given an admissions form
 |
| Not very pretty. Going from a two bedroom two bath apartment to this was looking like a dramatic difference...but I reminded myself I had to keep her safe. |
May 9th - Faxed admissions form to two doctors for completion and signature
May 12th - Met with doctor at American House and he agreed to help get my mom into skilled nursing.
May 13th - Received a completed admission forms from the neurologist, requested medical records, made lots of phone calls and sent faxes.
May 14th - Hand Delivered admissions form to skilled nursing community. Met with admissions person and again toured the community. Was told that they would call me "when a bed is available"**
**was advised by many health professionals to be persistent and
keep in close contact with the skilled nursing facility**
keep in close contact with the skilled nursing facility**
May 19th - Informed Area Agency on Aging case manager of my efforts to move my mom and sought advice
May 23rd - Called skilled nursing admissions and was told there were "still no beds available". Had a brief conversation and reinstated my interest.
June 9th - Visited and toured the skilled nursing community with my brother
June 26th - Admissions Director left a message at my home regarding placement.
June 27th - Admissions Director said she needs a chest x-ray of my mom and wanted to know when we could be ready to move in.
So, although I had been struggling to keep my mom safe for months, it eventually evolved into this desperate stage of trying to keep her from another head injury or broken bone. My energy became totally focused on getting her into this community for about six weeks. To connect the dots for you, my mom's last ER visit was June 23rd as outlined in my last Monday Memories post on June 30th. The skilled nursing community finally called with an opening June 27th. Behind the scenes, my kids were busily wrapping up their school year, graduating from middle school and Jacob and Kristin had just had their birthday the day before that last ER visit. To say things were busy would be an understatement. Meanwhile, knowing my mom had no idea what I was planning for her, and I had no real intention of telling her. The whole situation was a bit overwhelming and the sense of responsibility was not something I took lightly. So now although there was the initial excitement of finally knowing I could get my mom to a place where she could be safe -- it quickly turned into the pure dreaded reality that had been looming over our heads all along. All of this meant my mom has declined to the point of needing this 24/7 care and the added element of not knowing how she would respond to the changes in her living situation made me nervous.
4 comments:
The transitions between stages of this disease are so difficult. I remember it seems like as soon as we adjusted to one scenario she was moving into the next and throwing us off kilter. As caregivers we need to prepare for 2 steps ahead. You know that and you do it.
Just found your site from the alzheimer's reading room post. My Dad has dementia, still lives at home, is 92 and many things are just day to day but I can see his memory continuing to decline. It is interesting to read other people's experiences - thanks for sharing! I have learned a lot from the alzheimer's blog!
Boy, you have had a busy summer trying to get things situated with your mom. I hope your mom's transition is a smooth one for her...and for you. I know change is really hard for someone with alzheimers. So glad to see your post! Thanks for your comment on my blog...I tried to reply but it got sent back to me. Not sure what's going on with blogger?
You rocked this!! OMG that's a lot going on!! Strange thing about this illness - it's not painful for them - it's very painful and heavy for us. You are a blessing!
Post a Comment