A LONG, LONG WAY FROM HOME
This was probably 1942 right after my mom and dad had gotten married. Dad enlisted in the Navy and mom went to work on a army base in Brooklyn, N.Y. This was over seventy years ago . Unfortunately dad passed away 18 years ago and mom has no recollection of any of this.
Today my mom is not sure where her home is. When she is having a hard day she repeats many times that she wants to go home,and it is always the home that belonged to her parents. It never is the place she shared with my father, and it never is the home where she raised my brother and me.
I remember the first time after she already had Alzheimer's, that when we returned to her home after being out most of the day, she was surprised that she even lived there. I was alittle in shock, since it had been her home for the last twenty something years. A home that she told me that she never wanted to leave.
My brother and I have finally made a decision that our mom must go into a nursing home. A decision that breaks my heart as it would any child who had to do this to their parent. Yet nursing homes are all filled to capacity with others' loved ones.
Since I believe Florida will be best for her, I will continue to be a long distant caregiver for mom. Another decision that unsettles me greatly. Yet as a long distant caregiver who speaks to my mother each and everyday, I am filled with deep emotions like any other caregiver ,no matter how close or far they might be.
I now coordinate her care with her caregivers on a daily basis and I am in constant communication anytime an emergency seems to happen. I help plan her daily activities, her health care issues, as well as stimulating my mom by spelling, singing or simply laughing.
Am I not a caregiver? The answer is yes, just that I am a long distant caregiver. It can bother me when another caregiver thinks I may not understand because of the distance. Let me explain. I too see my mom disappearing. I also speak to her each day and go through the feelings of not being able to see her everyday or once a week. I too am a daughter with a mom who does not know who her grandson is, nor my husband of 33 years. There are moments when she is confused about who I am, giving me the title of being "her good friend."
After I see my mom for 3-7 days in a row she has no memory that I was with her, and questions when I will be coming to visit. I too understand how horrific this disease is. It is part of my life every single moment of every single day. It does not matter how far away I may live. it is still part of my life. I cannot escape any of this, nor do I want to. I am happy when she is having a good day and troubled when she is not.
The love and commitment I have for her cannot be measured . I will love and cherish everyday of her life, even if she and I are a long ,long way from home.
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My Mom My Hero is for the special people in our lives. A story of love and relationships. Available on Amazon & Kindle worldwide.
I love the picture! How happy they look. I hope that in your mom's mind, she can still see that life.
ReplyDeleteEven being a long way away, you are more of a caregiver than some people are that live on the same block. I will continue to send you all positive thoughts, that this transfer will be "easy" for all of you. Dacia
Thank you so very much for your supportive loving comment. Unfortunately my mom does not remember most parts of her life. She doesn't remember that she ever gave birth to me.Yet today she still knows my name. I am thankful and grateful for that. Hugs, Lisa
DeleteOh Lisa! I send you a huge hug for all that you do for your mom! Long distance or live in, YOU do more for your mom than most of us can do. I can only imagine the pain of having to do this for my mom when the time comes. We had the cat scan for her on Wednesday, and tomorrow is the caretaker seminar, so I'm hoping that I can learn how to handle the same question being asked 5-10 times a day. I love my mom, and want to be just like you when I "grow up"
ReplyDeleteThank You Lisa, for being here, and sharing your blog, and book with us. It's a help for so many caretakers out there, both live in and long distance.
Hi Lynn, One big huge hug to mom and you .As always xoxo Lisa
DeleteI have been following your blog for a few months as my mother also has Alzheimers. She's not as far down that road as your mother, but each time i see her a little more of my mother is gone. Twice in this past week my mother has not known who I was. Even when you know it is coming it's confronting when it happens. It is good to know that our family is not alone, and that others walk this same path. I am fortunate to be a close by caregiver as my mother lives 20 minutes away with my dad, who is her primary caregiver. My sister though is a 23 hour flight away from my mum - something that brings its own challenges. I love to read your blog and to see how you maintain that close relationship with.your mother.
ReplyDeleteAnno, Your message to me was so touching and my heart goes out to you, your dad and your sister.Please just cherish what time you have with your mom and try to be grateful for all the times that she still does know your name.It makes me feel good that my blog has somehow, someway comforted you. Please know that I am here for you. I hope you see this message for you did not give me your email address. Sending love & support. Lisa
DeleteLisa, you are amazing. I truly loved your book, My Mom, My Hero. It is so touching, honest, and heartfelt. I would like to converse with you privately, if possible, about your reviewing my book, Blue Hydrangeas, a love story about Alzheimer's. Please email me at MarianneSciucco@gmail.com. Thank you. And God bless you and your mom.
ReplyDeleteHi Marianne, I will contact you directly.
DeleteI cannot wait to read this book...
ReplyDeleteMy heart goes out to you... and hugs for the loving care that you give...
Sadly my 90 year old grandmother has dementia. I moved in with her last year to care for her (a big change for someone who is 37 but I wouldn't trade it for anything)... My grandmother has lived through 2 children dying (my mother just died in Feb) and each time she goes much further downhill. My remaining two aunts and I say it takes a village to raise our 90 yrs old toddler because that is often how we relate to her. We are tryign to keep her at home for as long as possible.. but we discuss the possibilities of sometime in the future we may need help. I find it so strange how they seem to revert back in time.. although my grandmother remembers me.. so much of the past 40 years or so is a blur for her.. She remembers her childhood and her earlier years more vividly now than ever...
Hi f.m. Your committment and compassion to your grandmother and the love you show is breathtaking. You are such a special grandchild and I'm sure to a very special woman -your grandmother. I'm sorry that you you lost your mom recently. That must have been so hard on you. Sending big hugs to you and grandma. Lisa
DeleteHi Lisa,
ReplyDeleteI want to first off let you know my name is Sandi and in case the post does not show an e-mail address it is sandra.bonneau@yahoo.com. You are a true inspiration and advocate to so many people. The help in just sharing all of this is good for you, yet your probably helping hundreds of thousands of others. My great grandmother had Alhezimers in the 80's. I was only 17 and could not understand why my grandmother did not know "ME" her first great grandchild that she spent so much time with. When my grandfather & his sister had her moved to the Nursing home I went to see her a few times but it was too hard on me. I did the visits on holidays etc...I even got a picture 5 years later with her with my daughter. We had a 5 generation picture taken. My grandmother passed about 6 months later at the age of 89. My aunt was her primary caregiver she gave up so much for my grandmother she even moved from the family house on the lake that held all the memories of my childhood to be closer to my grandmother. After my grandmother passed about 8 years later I decided to become a nurses aid. they started me out in a small facility then saw how I worked with AZ patients I was offered full time on an AZ wing. I have some of the best memories from there and I know I put everything I had into caring for my residents because I felt so guilty about my grandmother. I then started working driving a school bus and realized that the kids are so much like the alhezimers residents are; questions, smiles, and so much honesty. During this time my great grandmothers daughter moved back a couple houses down from the orginal into a new house on the lake. I was so happy. Here it is 20 years later I'm living in the same town my aunt is about 78yr and my happy memories are back. Yet now go ahead 7 years and my aunt is starting to forget things but I notice now because I visit all the time. Well this time I step up and do what is needed. My youngest daughter got to spend the cherished time with her favorite aunt and learned all about depression era, prohibition, vaudville, and how my aunt lived she was born in 1914. She passed away last year at the age of 98. Until the age of 95 she was able to pretty much live on her own with the help of caregivers that came in daily It was a very hard decision on finding the right nursing home for her. in order to get her in we had to get rid of all assets it went quickly,then make sure social security, medicare& medicade accepted.
In findng the right nursing home because I had worked in one I wanted my aunt safe & especially well cared for. See she never took anything stronger than asprin or herbal remedies. I wanted a place that would respect that. I also checked out the aids on how the staff was attentive to the residents, I didn't want to see people in the hallways laying in reclining chairs, walk into the place and smell urine, or see aids just hanging around at the nurses station looking bored. The aids need to have constant interaction with the residents because they are the ones doing 90% of daily care. I also got recommendations from friends that worked in the ambulance to see how they thought the fall ratio was. Because of being unsteady on their feet I wondered how many calls they got for a certain facility and the cleaniness of the place. With out breaking any HIPPA regulations of naming people they gave me an insight since they are called to places any time day or night. Please Lisa do some of this sort of research on any facility you are looking at. If you choose FL or NY find out if you can look at state inspection records. You can even get some of these on line if the facility likes to boast about them. In CT its JACHO....You are making a decision that I know is so hard and when you make a decision make sure you get to know the aids even be-friend them if you can. They will be your best ally. Please contact me if you have any questions. I would love to share some experiences as an aid with you.
(((((huuuugggs))) Sandi
Sandra, you inspire me.Your gentleness, committment and your love shines through in the words that you have written to me and your loved ones, Your caring for kids and who you are ,can only be that you yourself was surrounded by deep love and tenderness. Yes you are so right, my writings are healing for me, and the hundreds of emails that I recieve from others like yourself touches my heart each and everyday. And I thnak you for your advice about a nursing home for my mom .We have one that is highly recommended and although I now know deep in my heart that this is best for my mom , I cannot help feeling saddened that I cannot keep her safe and secure in her own home. I want to send you some huge hugs and thank you again. Lisa
DeleteLisa,
ReplyDeleteI can't reiterate how right Sandra is about doing your research and befriending the CNA's. I have made many friends at the facility Mom is living in and it's a huge help. Also do watch out for the medications that they may want to give your Mom, I have had to tell the facility that Mom is NOT to have any anti psychotics ever, they "snow" her and I will not have her in that condition just because it's easier for the staff to care for her. You will find that there are staff memebers who really care and others who don't and really don't care to understand the disease.
I visit Mom everyday, different times of the day just to keep the staff on their toes, they never know when I will be there, I have on several occasions given Mom a shower because the staff is busy and I felt Mom was in need. Nothing is perfect but it's your Mom and you want your Mother to have a similar lifestyle that she is used to. This year I even ran a golf tournament for the residents fund, it was a complete success and allows the residents to have computers, go out on trips etc...Next year we will continue with the golf tournament again.
I wish you luck Lisa, keep us posted and keep up the good work, your dialog helps me as does the other postings from the readers.
Lynne
Lynne, I love all the advice you give me. It means alot to me. Lisa
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ReplyDeletelisa.... just checking in to see how things are going... just concerned... hope all is well ... have you by chance found a facility for your mom. sandra bonneau
ReplyDeleteThanks Sandra for being concerned about my mom. We hired someone who is working on everything for us. Mom got approved by an elder care nurse and we were told it hopefully will take 60 days to get her placed in the nursing home. I'm keeping my fingers and toes crossed. Thanks again. Lisa
Deletethat is a bit of relief for you and your brother... is it one of the facilities that you have been able to check out? actually I'm also concerned for you and your brother too. I see that you really are doing all the things I do wish I did for my grandmother, but also know I did for others because of her. Lisa you just keep doing all that you are and this terrible disease will not be able to destroy you and it is because you are making good memories when so many others look to all the awful things this disease does.....((((( huuuuggggsssss)))) Sandi.... ps any time you want you can always e mail me. sandra.bonneau@yahoo.com
ReplyDeleteI can feel your love and commitment pulsating across that prose of yours. There is certainly a lot of history tied into it, of taking a shared story that was forged before us, and letting it go on into another generation or two. There is also the adherence to life, and making sure that the lives of those at the seemingly tail end of their years seem worthy enough to endure, with all of the assistance that is given to them. Caretakers should keep on doing what they do either ways. Thanks for sharing!
ReplyDeleteMarcia Sherman @ Comfort Keepers
Marcia your words are a masterpiece filled with compassion and understanding. You have touched on many different sentiments and I truly thank you. Lisa
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