I am back from visiting my in laws and am still trying to catch up to my life back here. I have driven 41 hours in the past week with two little children and I believe I am still twitching. I must say that I am proud of my two, they actually made the 18 hour trip each way without bickering or fighting. It helped that my father let me use his newly acquired van for the ride. Having so much room made rest areas a delight. The children would run and climb over seats and get out all that energy. I am happy to be home and greatly missed my husband. It was nice to come home to refinished floors and Kenzie's new painted room. The strangest part about the trip was how much I missed my mother, father, and brother (as well as my husband). I am used to the daily coffee conversations with my brother, the check ins with Dad, and spending time watching movies with mom. I really missed her and was terrified at how much she would regress while I was gone. Surprisingly, she did not regress as much as I thought. In fact, movie night Tuesday was the best one in a long time.
I am completely baffled lately though. I have been studying up on Early Onset Alzheimer's because I am getting ready to test myself either through my doctor or through a research program. As I read and study each resource, I am noticing that my mother is quite rare and unusual. As I reread her PET scan reports and watch her, I realize how blessed and cursed we are at her progression. As every little ability ebbs away, the only thing that stays is her unbelievable ability to understand everything around her. She is starting to slip away little by little but it is so unlike what many typical Alzheimer's represents. For instance, I took her to the ER on Tuesday because her hand is grossly swollen. it looks broken but does not bother her. We get there and my mother is more concerned with how long it will take because she wants to get home for our movie night. She tells the nurse that I have been gone for a week and she wants to have a special night with me. How is this possible, she cannot scoot herself onto the bed, has trouble with sitting in a chair, and definitely cannot feed herself anymore and yet she is able to complete such complex thoughts. I notice that she is not losing her ability to read people, understand conversations, remind you to set up appointments or ask for her social security money each month. She knows who the president is and what he does. She still prays for my brother's salvation and still worries about what others think. She is still very conscious of herself and the way she looks. I have researched so many diseases and genetic issues because she is so unlike what many people with alz are like. During my speech and Language undergraduate work, I was trained to work with patients with Alzheimer's. Not one of them was like my mother. Of course it is natural to question is it truly Alzheimer's and after all that I read, I am convinced that she has such a unique Alzheimer's that is affecting other areas of the brain, doing the same thing as normal Alzheimer's just in different areas. I think because of her age of onset, the radiation from breast cancer, and her knowledge of Alzheimer's from taking care of her mother all helped her retain the long term memory, reasoning, and comprehension. It is only the last few months that we started noticing her short short term memory was decreasing. I am unsure if it is that she is forgetting or just not caring. At least now her behaviors are not as severe and she is generally placid. It is only on the rare occasion that she gets upset or agitated. Tomorrow we have an appointment with her Dr and i am going to mention the genetic testing. If anyone has experienced this, please let me know. I am so interested to hear from someone experiencing this because it is very different in how to handle her. All the tips on all the sites do not work with her. She is much to aware to trick her although it is getting easier to distract her. I am off to bed-it is pretty late and I am going to regret being up this late tomorrow...
Thursday, April 28
Wednesday, April 6
Assessment time
How do I possibly express the destruction and devastation that Alzheimer’s brings? It literally is eating my mothers’ abilities and leaving her completely empty. How many of you have a loved one with this disease that is able to understand everything that is going on. She cannot do much of anything at all and yet she knows it. She told me tonight that she will die this year. She said that everything takes s o much energy and is so scary. She said when things are not flat or she has to walk over under or around things, it is hard. She feels that she will fall or that she does not have the strength to maneuver anymore. So I did some observations and here is my assessment.
Fine motor: She can no longer manipulate objects, knobs or small items. She cannot move her fingers independently. S he keeps her hands balled up more often now and even has difficulty wiggling her thumb in imitation. She cannot press things on or off and she can barely hold her pills or pick them up. She drops things constantly and does not realize it.
Gross motor: She can walk still but it is unsteady and shaky. She shuffles her feet and walks very slow S he can step over objects but not if the object is wider than four inches. She cannot step down even if it is a 3 in drop or less in some cases. She cannot walk backward is has difficulty with sitting on toilets, chairs or beds. Her coordination and balance are diminishing quickly. She can no longer lift one foot at a time.
Self Help Skills: She has no ability to care for herself. She is completely reliant on us and depends on us to do her hair, brush her teeth, and wash her hands. She never combs her hair or puts on deodorant. She cannot use a spoon without mass spillage and constant verbal and physical prompting. She does not participate in her bathing nor offers assistance with moving her arms/legs etc. I have to manipulate her body to clean or move her from place to place. When she is eating, she has difficulty with chewing, manipulating the food between her teeth and tongue, and swallowing. She cannot drink well either. E very now and then she snorts the liquid in her nose. She has trouble swallowing her pills.
Comprehension: She cannot follow simple one step directions and no longer understands directional positional and quantitative concepts. She understands her life, husband, family, children, and grandchildren. She still maintains a sense of humor. She enjoys pranks more than ever. She is more confused than previously especially with the hows and whys of everything. She has completely surrendered herself to us. For example, the other day she could not sit on the toilet so she peed standing up. She did not realize where the pee went or what she actually did. She now expects us to make her decisions and needs us to give her confidence in what she does. She has given us her complete trust and faith.
Behavior/social skills: Her behaviors have tapered off a lot from the past months. She no longer throws things and rarely screams as she did. She occasionally sees things from other people’s perspectives and does try to change herself to be better to people. She gets easily frustrated and will cry often. She has days when she is totally miserable and wants God to take her. She is tired of being a burden but realizes that God has a purpose for her even now. She believes that it is to save my brother and bring him back to Christ. She is passing my son now in regression. As he moves forward, she moves backward. The only area where she is still as an adult is in her logic and reasoning and understanding of life.
Today was really hard to watch as she spent three hours sitting on a toilet trying to go to the bathroom. When I arrived, she was so happy and silly. But after all that time on the toilet, she became sadder. She looked so pale and beat as I got ready to leave. I just wanted to hold her in my arms. Really what I wanted to do is to take her to Disney with my children or stay up talking about life. Share my frustrations, successes, dreams, hopes for my kids. Really I just want my mom back. She and all of us have lost out on so much and I wish it were different. But God is good and He does have a reason. I am just grateful I have Him in my life and that she does too. I cannot imagine going through this without Him and the peace that He surrounds me with.
Fine motor: She can no longer manipulate objects, knobs or small items. She cannot move her fingers independently. S he keeps her hands balled up more often now and even has difficulty wiggling her thumb in imitation. She cannot press things on or off and she can barely hold her pills or pick them up. She drops things constantly and does not realize it.
Gross motor: She can walk still but it is unsteady and shaky. She shuffles her feet and walks very slow S he can step over objects but not if the object is wider than four inches. She cannot step down even if it is a 3 in drop or less in some cases. She cannot walk backward is has difficulty with sitting on toilets, chairs or beds. Her coordination and balance are diminishing quickly. She can no longer lift one foot at a time.
Self Help Skills: She has no ability to care for herself. She is completely reliant on us and depends on us to do her hair, brush her teeth, and wash her hands. She never combs her hair or puts on deodorant. She cannot use a spoon without mass spillage and constant verbal and physical prompting. She does not participate in her bathing nor offers assistance with moving her arms/legs etc. I have to manipulate her body to clean or move her from place to place. When she is eating, she has difficulty with chewing, manipulating the food between her teeth and tongue, and swallowing. She cannot drink well either. E very now and then she snorts the liquid in her nose. She has trouble swallowing her pills.
Comprehension: She cannot follow simple one step directions and no longer understands directional positional and quantitative concepts. She understands her life, husband, family, children, and grandchildren. She still maintains a sense of humor. She enjoys pranks more than ever. She is more confused than previously especially with the hows and whys of everything. She has completely surrendered herself to us. For example, the other day she could not sit on the toilet so she peed standing up. She did not realize where the pee went or what she actually did. She now expects us to make her decisions and needs us to give her confidence in what she does. She has given us her complete trust and faith.
Behavior/social skills: Her behaviors have tapered off a lot from the past months. She no longer throws things and rarely screams as she did. She occasionally sees things from other people’s perspectives and does try to change herself to be better to people. She gets easily frustrated and will cry often. She has days when she is totally miserable and wants God to take her. She is tired of being a burden but realizes that God has a purpose for her even now. She believes that it is to save my brother and bring him back to Christ. She is passing my son now in regression. As he moves forward, she moves backward. The only area where she is still as an adult is in her logic and reasoning and understanding of life.
Today was really hard to watch as she spent three hours sitting on a toilet trying to go to the bathroom. When I arrived, she was so happy and silly. But after all that time on the toilet, she became sadder. She looked so pale and beat as I got ready to leave. I just wanted to hold her in my arms. Really what I wanted to do is to take her to Disney with my children or stay up talking about life. Share my frustrations, successes, dreams, hopes for my kids. Really I just want my mom back. She and all of us have lost out on so much and I wish it were different. But God is good and He does have a reason. I am just grateful I have Him in my life and that she does too. I cannot imagine going through this without Him and the peace that He surrounds me with.
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