As I mentioned in my previous post, Mom fell recently and often a fall can lead to a downward slope. However, I really was not expecting this quick decline of Mom's in the last week. I just don't see how the fall, which did not hurt her, was just a bit scary, led to where we are today.
She is having trouble feeding herself and can't always figure out how to use her utensils. She is much more confused, sometimes talking like it is 20 or so years ago, but still fully aware that I am her adult child. Her hallucinations have increased. For some reason she thinks her house is actually three houses. Frequently what she says is completely out of context and we feel bad we can't figure out what she is trying to tell us. I am getting the sense that her anxiety has been heightened so much after the fall that everything is scary to her and anxiety can make you pretty confused and flustered. It can't be helping her already compromised brain.
Dementia is just so darn frustrating. In our experience, Mom stays stable for a bit but then gets worse by a big quick change rather than a gradual change. Just as soon as we get used to taking care of Mom the way she is, she all of the sudden gets a lot worse. You feel like you are always playing catch up and not doing enough because you can't figure out how to help her fast enough.
It's like any illness with no cure. When medicines don't help and there is nothing you can really do, you just have to do the best you can.
Blessings,
Rev. Katie
Monday, March 26, 2012
Thursday, March 22, 2012
The Dreaded Fall
I have read in many places that falling is bad for the elderly, particularly those with dementia and other illnesses. It is like how they say getting pneumonia is the beginning of the end for many elderly. It seems that for some people, a fall leads to a downward spiral and no one can really explain why.
Even with all the safety bars we have in the house, Mom fell last week. While we got her up and she seemed ok, she was complaining more and more of different pain she was having. Dad took her to the doctor and they did not find anything, but we see some changes in her. For one, the increased pain, but also an increase in fear of doing things, some more vivid hallucinations, more fatigue, and a more confusion.
The anxiety created after a fall is actually one of the worst outcomes from a fall because then it results in the person being reluctant to walk and move around. Then their muscles weaken and they are at an increased risk of falling again. One of the essential things after a fall is to get the person comfortable with moving again so you can stop the deterioration of their body.
As with any change you see in your loved one, sometimes these things get worse for a bit and then everything resolves to a more stable state. Then again, sometimes things just keep going on a downward spiral. All caregivers dread the day your loved on falls, catches a bad cold, breaks a hip, or any thing happens that could change the trajectory of their disease for the worse.
Blessings,
Rev. Katie
Even with all the safety bars we have in the house, Mom fell last week. While we got her up and she seemed ok, she was complaining more and more of different pain she was having. Dad took her to the doctor and they did not find anything, but we see some changes in her. For one, the increased pain, but also an increase in fear of doing things, some more vivid hallucinations, more fatigue, and a more confusion.
The anxiety created after a fall is actually one of the worst outcomes from a fall because then it results in the person being reluctant to walk and move around. Then their muscles weaken and they are at an increased risk of falling again. One of the essential things after a fall is to get the person comfortable with moving again so you can stop the deterioration of their body.
As with any change you see in your loved one, sometimes these things get worse for a bit and then everything resolves to a more stable state. Then again, sometimes things just keep going on a downward spiral. All caregivers dread the day your loved on falls, catches a bad cold, breaks a hip, or any thing happens that could change the trajectory of their disease for the worse.
Blessings,
Rev. Katie
Wednesday, February 29, 2012
Accepting Caregiving
Now that we have moved from home, Mom and Dad are in need of some more help. Mom can not be left alone at all so unless someone else is in the house, Dad can't go out to the grocery store, to meetings, or really to do anything. Before we left, they got an amazing caregiver who comes four days a week for four hours, but Dad is realizing that they could use her more often. However, this is hard for Mom to accept, and I can understand why.
For someone with mid-stage dementia, they still know much of what is going on. They know they are sick, but they do not really know how sick they are. They may not believe they need to be supervised at all times, after all, they are adults. As Mom says, she does not want a "babysitter." It is very hard to say that her caregiver is not a babysitter though. They do projects together and she helps Mom get dressed and takes care of daily tasks, much of what our babysitters do for our son.
I really do not know how to help someone with dementia accept that they need a caregiver. They don't believe they need one and they don't understand why a family member can't be there 24/7. For some people I am sure they even become angry at their family for getting a caregiver rather than family staying with them all day. I can only imagine what they might be feeling: abandonment, misunderstood, angry, like they are being babied, and betrayed. All of this is understandable.
These are the hard times when it is up to us to make decisions for our loved one with dementia because they can't make the decision for themselves. We will always question when we do this because we really want our loved one to be ok with the decision. We want to treat them as adults who can still make rational choices and we do not want to upset them.
But on the other side of this, I know what it is like to have someone else make decisions for you when you can't. Sometime when my bipolar disorder is particularly bad, my husband has to make decisions for me, like make me exercise, go to bed on time, or tell me what to eat. When this happens, I am pretty mad at him for making choices for me, after all, I am an adult. But in the end, he is really taking good care of me and helping me have a better life.
People with dementia may never be able to look back like that and say that they understand we are caring for them well. However, if we were to go back a few years before the disease presented itself and asked our loved one if this was a good decision, they would probably say "yes." Sometimes we have to hold on to the understanding that if our loved one could understand, they would be happy with our choice.
Blessings,
Rev. Katie
For someone with mid-stage dementia, they still know much of what is going on. They know they are sick, but they do not really know how sick they are. They may not believe they need to be supervised at all times, after all, they are adults. As Mom says, she does not want a "babysitter." It is very hard to say that her caregiver is not a babysitter though. They do projects together and she helps Mom get dressed and takes care of daily tasks, much of what our babysitters do for our son.
I really do not know how to help someone with dementia accept that they need a caregiver. They don't believe they need one and they don't understand why a family member can't be there 24/7. For some people I am sure they even become angry at their family for getting a caregiver rather than family staying with them all day. I can only imagine what they might be feeling: abandonment, misunderstood, angry, like they are being babied, and betrayed. All of this is understandable.
These are the hard times when it is up to us to make decisions for our loved one with dementia because they can't make the decision for themselves. We will always question when we do this because we really want our loved one to be ok with the decision. We want to treat them as adults who can still make rational choices and we do not want to upset them.
But on the other side of this, I know what it is like to have someone else make decisions for you when you can't. Sometime when my bipolar disorder is particularly bad, my husband has to make decisions for me, like make me exercise, go to bed on time, or tell me what to eat. When this happens, I am pretty mad at him for making choices for me, after all, I am an adult. But in the end, he is really taking good care of me and helping me have a better life.
People with dementia may never be able to look back like that and say that they understand we are caring for them well. However, if we were to go back a few years before the disease presented itself and asked our loved one if this was a good decision, they would probably say "yes." Sometimes we have to hold on to the understanding that if our loved one could understand, they would be happy with our choice.
Blessings,
Rev. Katie
Wednesday, February 22, 2012
Everyone Is An Artist
We have expanded the ArtCare for Dementia program that we run from the Carolyn L. Farrell Foundation for Brain Health to include other forms of art besides just the TimeSlips storytelling. Today we had our first papercrafting session and it went really well.
I have been scrapbooking for years and know how fun and meditative working with paper can be so I wanted to bring that to our ArtCare participants. I also needed to think of something that would be simple to do no matter how well your organizational skills were working or your manual dexterity. I wanted everyone to know that we are all artists.
Today I brought different scraps of colored and patterned paper and let everyone tear the paper up and glue the strips onto a white background. Then I cut those collages up in squares and mounted the squares on colored notecards. When you describe the project, it is hard to imagine the beautiful artwork that will be created out of the collages, but just look at these pictures to see what everyone made. The collages turn out to be mosaic and kind of a stained glass effect squares that can be set off wonderfully by a colored background.
The best part of all this was to see everyone have fun with the collage and really see their smiles once they saw their notecards. Projects like this really show how if we just let our imagination go, we can all create beautiful art. The purpose of our ArtCare programs is to bring joy into people's lives, and I think we really did that today.
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This is a project you can easily do at home with your loved one with dementia. Then they have cards to send people for birthday's, anniversaries, etc... or put them into stacks of 5 cards with a bow around them and you can give them away as presents.
Blessings,
Rev. Katie
I have been scrapbooking for years and know how fun and meditative working with paper can be so I wanted to bring that to our ArtCare participants. I also needed to think of something that would be simple to do no matter how well your organizational skills were working or your manual dexterity. I wanted everyone to know that we are all artists.
The best part of all this was to see everyone have fun with the collage and really see their smiles once they saw their notecards. Projects like this really show how if we just let our imagination go, we can all create beautiful art. The purpose of our ArtCare programs is to bring joy into people's lives, and I think we really did that today.
.JPG)
This is a project you can easily do at home with your loved one with dementia. Then they have cards to send people for birthday's, anniversaries, etc... or put them into stacks of 5 cards with a bow around them and you can give them away as presents.
Blessings,
Rev. Katie
Monday, January 23, 2012
Moving Out
It is with deep sadness that my family and I have decided to move out from my parents house. We have been here for two and a half years and have been able to help my parents in many ways. However, I am sure all of you caregivers know, 24/7 caregiving can be very hard to handle. It takes up a lot of your life and while you feel honored to do it, it also takes a tole.
For my family- me, my husband, and son,-it was becoming too hard for us to maintain our life and be live-in caregivers as Mom's care needs have significantly increased. We have discovered that we need our own space in order to create a strong family unit for the three of us.
We are only moving 2.5 miles away and we will still be helping to care for Mom. This actually allows for some help to come into the home and we have found a great caregiver who likes to do projects with Mom. She has worked as a nurse with the elderly population and really knows how to communicate with Mom and engage her in projects. I think this will actually make Mom's life more joyful as she will have more things to do and enjoy.
I do wish we could remain living with Mom and Dad as we love them very much and want to help as much as possible. It makes us sad to know we won't be here all day for them. However, as all of us children need to remember, our parents want us to be happy and healthy-they want what is best for us. Our parents never want us to give up too much of our lives or ourselves in order to care for them. Mom and Dad are supportive of our decision and are looking forward to having us take over some of the big family events in our new house.
We have had many good times living with dementia and we feel honored to have been able to take this journey with Mom and Dad on a daily basis. Jeff and I have learned a lot about family, love, and life by the example of my parents. We are so appreciative of all they have taught us and how close we have grown together. We are looking forward to the ways in which we will still be able to help them in the future in our new home.
I will of course continue to keep up on the blog since we will still be caregivers for Mom. It will be interesting to see how this change goes and what new roads lie ahead for all of us.
Blessings,
Rev. Katie
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| Photo by Jeff Norris |
For my family- me, my husband, and son,-it was becoming too hard for us to maintain our life and be live-in caregivers as Mom's care needs have significantly increased. We have discovered that we need our own space in order to create a strong family unit for the three of us.
We are only moving 2.5 miles away and we will still be helping to care for Mom. This actually allows for some help to come into the home and we have found a great caregiver who likes to do projects with Mom. She has worked as a nurse with the elderly population and really knows how to communicate with Mom and engage her in projects. I think this will actually make Mom's life more joyful as she will have more things to do and enjoy.
I do wish we could remain living with Mom and Dad as we love them very much and want to help as much as possible. It makes us sad to know we won't be here all day for them. However, as all of us children need to remember, our parents want us to be happy and healthy-they want what is best for us. Our parents never want us to give up too much of our lives or ourselves in order to care for them. Mom and Dad are supportive of our decision and are looking forward to having us take over some of the big family events in our new house.
We have had many good times living with dementia and we feel honored to have been able to take this journey with Mom and Dad on a daily basis. Jeff and I have learned a lot about family, love, and life by the example of my parents. We are so appreciative of all they have taught us and how close we have grown together. We are looking forward to the ways in which we will still be able to help them in the future in our new home.
I will of course continue to keep up on the blog since we will still be caregivers for Mom. It will be interesting to see how this change goes and what new roads lie ahead for all of us.
Blessings,
Rev. Katie
Monday, January 16, 2012
Reading For Your Loved One
It becomes increasingly hard to make sure Mom's day is filled with enjoyable activities for her since her ability has deteriorated so much. People often suggest that she can read, but she can no longer see well enough to read large print material. It is not that she is losing her sight, but rather that she is seeing things differently. Words literally jump off the page and move around on her, so she just can't read anymore.
However, my Dad has started reading to my Mom, almost on a daily basis now. I have to say, it is so cute! It is great to see them spending time together and reading something that they can then both talk about later.
Sometimes we are unsure about offering to read to someone for fear of treating them like a child, but many people really like to be read to. It can allow them to find enjoyment in reading again if they can't read on their own and often listening to someone else read is a relaxing and comforting experience.
I think it is great that my fast paced Dad takes time to sit and read with Mom. It shows how much he loves her and likes to care for her.
Blessings,
Rev. Katie
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| Photo by Jeff Norris |
However, my Dad has started reading to my Mom, almost on a daily basis now. I have to say, it is so cute! It is great to see them spending time together and reading something that they can then both talk about later.
Sometimes we are unsure about offering to read to someone for fear of treating them like a child, but many people really like to be read to. It can allow them to find enjoyment in reading again if they can't read on their own and often listening to someone else read is a relaxing and comforting experience.
I think it is great that my fast paced Dad takes time to sit and read with Mom. It shows how much he loves her and likes to care for her.
Blessings,
Rev. Katie
Monday, January 9, 2012
How Does Your Faith Help You?
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| Rehnberg Memorial Window @ Unitarian Universalist Church of Rockford, IL |
I was recently talking with other caregivers of people with dementia/Alzheimer's and many of them commented on what a support their faith is to them. Some expressed that they believe God has a purpose in all things and they trust that purpose. Some said they pray for things like humor in hard times, or patience to help them understand better. Some said they make a point to find the blessings in the midst of this illness.
For me, my I find my faith helps me accept what is right in front of me rather than wishing things were different. My faith helps me remember that all we have is the present moment and if I can learn to stay in that moment, I can truly enjoy what good is happening, because there is always some good somewhere. My faith also shows me the great love that exists in this Universe, lived out by communities of caring people who help me and my family along this path.
How does your faith help you?
Blessings,
Rev. Katie
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