AS TIME PASSES BY
This was my mom in 2010 celebrating her 86th Birthday. At that time Alzheimer's had already made it's mark upon her. Mom will be 89 years old tomorrow and as she has aged, so has the progression of Alzheimer's. These last 2 weeks have been pretty stressful, and for me many tears have fallen from my eyes.
Last week mom went from an ambulance to the emergency room, and then was admitted into the hospital. Only to find out that she had terrible arthritis in her knee, which left her unable to walk. Today she is in a rehab program at a nursing home, a place she will not be able to leave. This has become her "new" home. Although I knew it was inevitable, I did not think that this was how it would happen. My mom never mentioned to anyone through all these years that she ever had any pain in her leg.
Mom is incapable of following the physical therapist's instructions. She is now wearing a diaper out of necessity, and not because she is incontinent. Since she has no way of walking she cannot get to the bathroom. Trying to explain any of this is too complicated for her to understand. Given the disease and her age I truly believe that mom will probably be in a wheelchair for the rest of her life.
I need to take a deep breath and take hold of my emotions, and pull myself together and wipe away the tears. Mom was given medication since she was babbling which makes me wonder how quick she might become a "zombie". She can still speak and although it has been difficult for me to collect my daily kisses, I am hopeful that they will return. She has always been able to bounce back. Facing reality, probably not this time.
I was able to have her spell several words with me this week. Which left me knowing that she was still capable of thinking. She spelt for me beautiful, sunshine, education and fabulous. Needless to say she actually spelt each one correctly. We also sang "you are my sunshine," as she said and I quote her, "oh how I love that song."
As hard of a week this was for me and my brother, I can only imagine how difficult it was for her. I am sure there were moments where not only was she confused but frightened as well. I guess the one good thing about this disease is that as quick as the thought appears, that is how quick it disappears .
I am saddened that although the nurses and staff seem nice to mom, they somehow do not really understand how to try and communicate with her. While she is still verbal, mom did not respond when the nutritionist asked what food she would like to eat. When I see someone with Alzheimer's even if they can no longer speak I find a way to relate to them. Behind their glazing eyes is a person who is still alive and breathing. More training needs to be done in hospitals and nursing homes across this country so these workers can understand this horrific disease.
I have seventeen long days until I get to see mom, and I wish that I will never have to leave her. Unfortunately this cannot be . So for the days that I will be with her, I must try to enjoy every passing moment that I can share with her . I know that if my mom could understand what was going on ,she would try to comfort me and tell me, not to worry .
As time goes by each second of everyday my mom is slipping away. It hurts me terribly, yet I must except the truth. I pray that mom's last days, no matter how many she has left she will be able to feel all the love that I have for her.
My Mom My Hero Book is for the
special people we love in our lives. Great reviews .Available on Amazon & Kindles
worldwide.
she will, Lisa ... her Feeling are not going to get dement ... I wish you all lots of Love ... <3
ReplyDeleteMarion Reinartz, Germany
Thank you so much xoxo
DeleteI empathise completely..... thank you for sharing this to my Alzheimer Association of Ireland page........ I send you strength and peace....and acceptance. M xx
DeleteThanks Michelle. We are ALL in this together.
DeleteI so feel for you, I am going through the same thing with my Mom, who turned 92 on July 23rd of this year. She started her decline about the same time your Mom did, and it is a long and hard process. It tears me up, but I keep praying, as she always has, to accept, or if not accept his will, give me the the courage to be reconciled to it. God bless all of us!
DeleteAmen .
DeleteSuch feelings Lisa. So sad. I have this to come but share your intuitive reaction to communication and wish others could also understand. Stay strong and may our angels be with you and your mum.xxxx
ReplyDeleteJane I am touched by your words. Hugs Lisa
Deleteyour update is heartfelt.
ReplyDeleteplease consider moving your to a nursing home up north by you. i have been following..read your book...i am in the middle of caring for my mom..difficult decisions ahead too.
best wishes-suzette
Thanks Suzette for sharing your kind words. I think it's best for my mom to remain in Florida. A very difficult decision but one that has been talked about with my family and my support group at the Alz Assoc.
DeleteHappy birthday, Mom.
ReplyDeleteYou're awesome, Lisa.
I'm thinking of you. It's been such a long journey, how well I know.
Best, Esther
Thanks so much Esther. I always feel your warmth. Yes Happy Birthday mom !
DeleteWhat a fantastic blog. I am my grandmother's caretaker- 90 yrs young, and she is in the middle spectrum of dementia. I am so thankful we have not gotten to this point yet, but I know it's coming. And I wholeheartedly agree there needs to be more training on this disease. I have actually contemplated returning to school to get my counselor's masters so that I can help counsel the caretakers (like myself) how to survive dementia. Many good wishes and healing vibes sent to you!
ReplyDeleteFrankie, I'm sorry to hear about your grandmother. You are a very special grandchild and she must be a very special lady .Best of luck with your ventures, returning to school or whatever path you choose. Hugs to you and granny.
Deletethis brings back all the emotions I felt-and still have since my mom passed on March 7. I know your pain, and I am crying. Talk to her, touch her. My mother was home with 24/7 care but confined to a wheelchair for 3 plus years and hardly ever opened her eyes. She couldn't walk or stand, and didn't know she was ever hungry. One day I called her "mommy" and she smiled and opened her eyes. So, I continued to call her mommy all the time. Make sure they give her fruit-my mom stopped drinking and fruit-watermelon especially, is full of water!
ReplyDeleteHUGS to you, Lisa
What you just shared sent chills right through me. I try to come to turns with this disease and for some how many years they must live within their "prision" walls. It is heartbreaking. My heart goes out to you and the loss of you mom. Hugs right back to you. Lisa
DeleteThis disease is horrible. Ive cared for my grandmother full time since 2009. Its very hard on the family, she was the glue that held us all together. Now we are lucky to even see everyone twice a year. Its very stressful, especially when you dont have any help or breaks. Grandma cant do anything on her own anymore and is very fiesty when it comes to taking a shower or going to the restroom. Ill care for her as long as I can but it seems to be harder and harder at times.
ReplyDeleteStephanie, I cannot imagine how difficult this is for you. Your love and caring for your grandma is so very touching. Please take care of yourself and try not to do this all alone. Reach out to friends and other family members. I know that your grandmother knows how special you are.
DeleteReader knows meaning
ReplyDeleteof Alzheimer’s Disease
MY MOM WROTE THIS FOR MY GRANDMOTHER....MY MOM PASSED THIS JUNE 30TH...HER POEM ALLOWED US TO UNDERSTAND HER..BUT ALSO TO UNDERSTAND OUR FEELINGS AND EMOTIONS...MY MOM SENT THIS POEM TO THE NEWSPAPER IN 1998...LITTLE DID WE KNOW THIS WOULD BE OUR PEACE....
To the editor:
The letter of Shelley Fabares’ on
Sept. 30, 1998, regarding Alzheimer’s
Disease brought back many memories
to me. My mother suffered Alzheimer’s
and many people still do not know
what it means.
They think if she doesn’t eat, it’s
because she is not hungry. If she
doesn’t ask for a drink of water, she is
not thirsty. It’s not true.
Even if they have it in front of them,
they might think it’s a picture. You
have to give it to them. It takes
patience, but it has to be done.
After my mother’s death, I wrote the following
poem so that even if one person
learns the meaning of it, it will be worth it.
--------------------------------------------------------
Treat Me Like A Baby
When I am old and senile, please
treat me like a baby. I won’t be able to
ask you for a drink of water—you have
to give it to me.
I won’t know when I will be hungry. You
have to feed me and keep me clean.
Warm me up in winter—see that I am
cool in summer.
Am I asking too much?
You might think I am not all there, but
you will notice a light in my eyes.
When you will be near me, you will
see a smile on my face. That would
mean, “Thank you, “I love you.”
It’s hard to ask all this. It’s too much
work. It’s too much stress. But whatever
you do, my blessing will go to you.
Signed,
Olga P. Guerra, LAREDO TX,
Lovely and thank you for sharing this with me/all. Lisa
Deletethank you for sharing this.i was caregiver to my mom for three years before she passed away @ 88 in a nursing home!!i was with her every minute i could and i too tried to have much patience with mom and told her many times how much i loved her!!the nursing staff in those nursing homes need to get with reality and need more training in how to deal with people like my mom..i could get my mom to do anything it took lots of patience and i just stood and waited for her to be ready...even though they may not know you always remember you know them
DeleteI'm so sorry about your mom. My heart goes out to you .xo Lisa
DeleteLisa...I just read your blog and am touched by your love and devotion to your Mom. This disease is such a tragic one... my Father also had Alzheimers and passed away 3 yrs ago at the age of 73.I helped my Mom care for him so we were able to keep him at home... continue to love on your Mom and do all the things you would even when she can't respond...because she is still there... my Dad was...all the way until the end... May God bless u... LuAnne
ReplyDeleteLuanne I just want to give you one big strong hug for your loving words. I'm so sorry to hear about your dad and I know you know that he is now at peace. xoxo Lisa
DeleteI so understand what your going through,i was a caretaker for my mom with Alzheimer's for a few years it was very tough,more than once i had a good cry.I had to put her in a hospital because she was to hard for me to handle anymore ,it broke my heart to do it ,but i didn't have much choice,i know she's in good hands but yet i feel like they don't understand her enough she can't talk anymore everything is a mumble so she can't ask for what she wants,i try to visit when i can,i feel its not enough but i have to travel by plane ,so i can't go often as i like.All i know its heartbreaking to watch any parent with this disease.I love her so much.
ReplyDeleteYour love for your mom shines through and through. And yes you and I truly understand. My mom also is 1200 miles away. We both need to stay strong, and cry when we have to knowing that our hearts are breaking.
DeleteI watched and did as much as I could for my Mother; she had Alzheimer's for 9 years. My siblings placed her in a home; when she first was diagnosed, she begged me to not place her in a home; there was plenty of money to have a caregiver take care of her at home. After she passed, Dad changed the required documents so that I would be the only one to make the decisions for him. I have taken care of him, along with a caregiver her at his home since 2010. He has vascular dementia - frontal lobe. It is very different from my Mom's Alzheimer's. Dad is physically ill and mentally abusive now and has been in a SNF. My siblings have betrayed me to try and get to his money. It's a court battle that is heartbreaking, and I have done my best to make sure Dad is as comfortable as possible. I visit him often; however vascular dementia sometimes results in bursts of anger, triggered by siblings. I still give him hugs and tell him that I love him; I ask him for a kiss. As I type this, the tears stream down my cheeks. These diseases are cruel. I hope his heart can see the love I have for him....I've done my best, but it doesn't feel like it's enough....
ReplyDeleteI so truly feel for you. It saddens me that that your sibblings are not here for you and especially your dad. You are both in my prayers. Hugs , lisa
DeleteI feel your heartbreak Lisa. I lost both my mother-in-law (who had AD for 5 years) and my father (who lived with AD for 12 years) within two months of each other earlier this year. Each had their own journey with Alzheimer Disease which was very different but I know the frustration in knowing more training should be done for long-term care staff. Some seem to be really in tune with residents and some really don't. As my mother would say when he asked my dad, "We'll just have to make the best of it.". My thoughts are with you as you spend time with your mother during her last days.
ReplyDeleteAnne, I'm sorry that you too lived through this with both of your parents. I lost my dad 18 years ago. He had a horrible death, although he "only" suffered for 9 months. I cried more while he was alive than when he passed away. I just pray that my mom will not suffer. Up till now she has been happy. Alzheimer's is so horrific for all the it robs and for how many years it can take before our loved ones can be at peace. I so appreciate you reaching out to me. Sending hugs your way. Lisa
DeleteI took care of my father-in-law with Alzheimer's disease...It was the strongest love I have ever known..they are a parent, they are a child...You must spend as much time as you can in their reality...It is worth it because you learn and feel how they feel, often upset over something they think they have lost...A car they haven't had in years or a pair of trousers apparently left at a dry cleaners somewhere....I was with him when he died...I cried for three days when I had to take him to a nursing home...I wait to meet him again when it is my turn to go....His love is still palpable in my life...
ReplyDeleteAmazing your love for your father in law. That is so special. many people do not have that with their own parent. He must have been a fabulous human being. Hugs, Lisa
DeleteHi Lisa! I know how you feel My Mom was my grandmothers caregiver before she past away 2yrs ago....My Mom was still working a full time and taking care of my grandmother full time as a working mom myself I would help out so much...Unfortunately it got to a point that my mom was really worn out...I began to talk to her about nice assistedliving homes.....to get her comfortable with the fact that she has done her best for her Mom but its very hard to care for her alone...Long story short we found a nice place close to my Moms house and not even 2wks. Later my Mom was diagnosed w/ Alzheimers its only been 2yrs and she is pretty much total care already she is only in her early 60's....My heart aches everyday looking at my Mom...Half of the time she doesnt know me....What strengthens me is I continously remember that God doesnt allow us to go through what we cant handle....I made it thru w/my grandmother who was my rock and I can make it thru with my mom who is my world! Be Encouraged And Know Your Not Alone!
ReplyDeleteKim
We are all in this together. I feel your love and your support. Lisa
DeleteMy home has alztheimers too. She is 88 and in a nursing facility 1 1/2 hrs away. I go to see here every weekend. I may miss a weekend occasionally and then so guilty. It is so heart-breaking to see my mother this way. My heart goes out to you. - Beverly
ReplyDeleteBev you sound so special and I'm sure you bring lots of love to your family. Lisa
DeleteMy sister is the caregiver of my Dad, he was diagnosed 5 years ago with Vascular dementia/ Alzheimer's disease and now with pancreatic cancer. Everyday my Dad gets a little closer to heaven, this is my first time admitting it. He was going to live to be 110 and be hit by a jealous husband, that will never happen he is 85 now and every day I pray for just a little more time, bargaining that God lets him stay till Christmas, till my daughter's birthday, till we can just get up there so I can be with him. I wish we never had to go through this with our parents, grandparents, or other loved ones. God Bless you Lisa and God Bless your mom for raising such an unselfish daughter.
ReplyDeleteI so hear your words, and I totally understand. Letting go and having them rest in peace to me is a blessing. I wish the same. Love to you and your sister. Lisa
DeleteI loved your story I was a caregiver of many clients that I had when I worked homecare and nursing home settings. I worked with individuals with Alzheimer's and with Dementia. I can relate to the one where there is a light in there eyes because I saw that when I caregiver, I would talk to them, and just let them know I was in the room with them. Today I face problems of early onset Dementia and am learning to cope with this disease. but I fear when the time comes when my disease progresses and I can no longer take care of myself, I just hope that someone will be there for me as I was for them, barb
ReplyDeleteBarb, I am so touched by your story and I am sorry that you now have early onset dementia. Please this is the time for you to try to plan ahead for your own care. Do you have any family nearby? How can I support you? I ma here for you. Lisa
DeleteBlessed Be .. My grandmother was a wonderful lady, and I cherish all of the good memories. She lost that battle a few years ago, and it was a battle. My mom and I were the main caregivers, and we still rememeber the special conversations we had before it had completely overtaken her memories. Hang in there and hold those times to your heart.
ReplyDeleteI'm sorry about your grandmother. Not only was she a wonderful lady you were also an adoring grandchild. The love you shared was very special. Hold on to those special moments.
DeleteI am so very sorry for the feelings you are having Lisa. I know how very hard it is. I have been a CNA since Oct. 1981! I love my job and I love my Alzheimer's patients. We have very caring staff at the Health Care facility I work at. We have continuing education each year. I have met very wonderful families over the years. Some accept the process better than others. It is very hard. I know this. I am so very glad for your mom and you that you have been able to help her as much as you have. Don't feel bad, God has a plan for us all. We all have to accept what we are given. I also know first hand, as my Grandfather also had the disease, so I have dealt with it from both sides. If you are unhappy with the facility your Mom is in, please look for another. You will never forgive yourself if you don't. You need to be at peace with yourself and to take care of yourself also. God Bless you and your Mom, Lisa. Please join a support group also, they help tremendously!!
ReplyDeleteDear Anonymous, Please I have so much respect for all the caring aides, RN's and especially for my mom's 2 caregivers. I do not know what I would have done without them. Thanks you for all you caring suggestions, and I feel your blessings and well wishes to my mom and me. Thank you for all your committment to others.Lisa
DeleteLisa, I am a hospice aide and have been for 12 years. I understand that this is a heart breaking time for you and your family. I see it all the time when family gives up and stops visiting because mom cant talk or smile anymore. If one takes time to look into the eyes you will see the love your mom had and still has for you. She does know you even when she cant say it. Sit with her when you can and talk about the "good old days" show her pictures and just be there. Your time with her is priceless to her and you. Talk to her tell her you love her....she will know...she is your mom....undefeatable love
ReplyDeleteThank you for sharing this. I will never stop seeing my mother nor stop sharing all the love that I have for her. I am definately in touch with that when "all looks gone" there still is a person alive. I wrote about it in this blog. Fortunately my mom still speaks, sings, and at moments is sharp in between thinking her name is mine and ..... Hope this lasts for many more years, although mom is close to the end part of stage 7. Lisa
DeleteDear Lisa, I am so sorry to hear that your sweet mom is worse. It seems, though, that she will be able to improve at least some. "Anonymous" is so right. Eyes are telling, so please remember to look for their message. You have been a wonderful daughter and she knows that. No words are necessary to express that kind of love! I pray for better days for you both. Thank you for sharing.
ReplyDeleteMy sweet friend Lynn, thanks for all your support and kind words. Lisa
DeleteI just finished your book and my heart goes out to you. I believe you have reached the point I did last July and August. My mother had vascular dementia and was an RN, 76 years old, but had been struggling with dementia for years. She raised me (also an RN) to make tough decisions about quality of life over quantity. Knowing this was what she would want, I made the decision to put my mother in Hospice care to ease her suffering during the last weeks of her life. She passed August 11 of 2012. I had a very special Hospice nurse who coached me through this, helping me realize that what mom wanted was peace. Take comfort in the fact that at some point as things progress, God takes over and we have very little to offer other than comfort care and love during this difficult transition. Hospice was such a comfort to me as a caregiver and a daughter. You have done so much for your mother already. Give yourself permission to grieve and to seek assistance. Prayers for you and your family at this difficult time. Lori
ReplyDeleteHi Lori, First I'm terribly sorry about your mom. At least she is now at peace. I sometimes wish that for my mom, when she is having some difficult days.I was told by my support group leader at my support group, over 2 years ago that I was grieveing. I guess I was a little in denial and also wanted to stay in the moment and cherish what she was still able to be(as my book expresses). I want to thank you so much for writing to me. My mom is being evaluated for hopsice this week. Last week she did not qualify. What a horrible path this is and my emotions at some moments get's the best of me. Hugs to you. Lisa
DeleteI too have walked this road with my mother. The only good thing that came from this awful disease was that we became so close. I loved my mother like never before! Never will I regret spending every day with her for 4 years. I do still hurt when I think about year 5 and the 11 months she had to be in a nursing home due to colon cancer before her death.
ReplyDeleteDear Wanda, I too have fallen in love with my mom unconditionally. This disease opens doors that I never thought was possible. I so understand what you have written, for I am in the same space. I'm sorry about the loss of your mom and happy that you could feel such a deep love for her.For that we must be thankful.
DeleteLisa
AMEN. I LOVE YOU NURSEMOMMY.WHAT A SPECIAL HUMAN BEING YOU ARE. HUGS,LISA
ReplyDeleteI agree as an employee of a nursing home they do need more training. my great grandma had it and though their memories are foggy they are still humans. it hurts watching peoplethat just go on their way and think that their is nothing that can be done to communicate better their are ways to communicate nonverbally. even tho the disease is not reversible we can still make them feel loved and wanted as they fight the horrble disease of dementia.
ReplyDeleteDear Anonyomous, I have also been having some great experiences with the nurses at my mom's new "home". They seem to be trained dealing with patients with dememtia. Sorry that your family had to deal with this horrific disease. Lisa
DeleteI lost my Mom to Alzheimer's this past April. I was her caregiver for 15 years. It was not easy. I am so lucky that I had the support of my husband throughout this entire process. He was my rock and DID get me through the rough times along with my faith in God. This is something my Mother had instilled in me. Don't ever lose the faith as God will not give you more than you can handle. I finally put my Mom in a nursing home 2 years before her passing. At first I felt like a failure....instead, I was failing her by not doing this. She was happy...the depression went away...she was with people her age and same as her. They all got along wonderfully. They seem to understand each other...like they have there own language. Anyway, I would pray that when God said it was her time that he would take her in her sleep. This is exactly what happened. It hurt to lose her but it was also easy....sounds crazy to say that but....she now is at peace and is with my Father and her parents. This is what she wanted. But let me tell you the best part of her and I....God certainly BLESSED the both of us. The day before she passed, God gave my Mom back to me. She was my Mom and I was her Daughter. For 15 years I became the mom in our relationship.....She thanked me for everything I did. She told me things that I knew she didn't know...or so I thought because she had Alzheimer's. I learned through this process....they DO KNOW EXACTLY what is going on around them. You may think they no longer know you, but they do. Keep talking to them. Tell your loved one how much you love them. Rub their face like a mother would their baby. This is a memory that is never forgotten by them. Always love them, tell them daily if you can....they know. I am now celebrating my Mothers life not her death! How much better can that be especially knowing I did everything I could. Lastly, a very important point....if you as the caregiver can not take care of yourself, you won't be any good for your loved one. Find time to decompress. It is okay! God bless all the caregivers, you are never alone!
ReplyDeleteOh my I love and totally agree with everything you have said. Your wisdom, your thinking are what I think and feel. G-d bless for your words of kindness and caring. I'm so sorry about your mom yet I wish for my mom what has happened to your mom. I wish that we could speak some more. I cherish what you have written and I thank you. xoxo Lisa
DeleteI can't even remember how I found your blog -
ReplyDeleteI am caregiver to my mother. She has Alzheimer's. As I write this she just finished her favorite task - dust mopping. And now she is playing with her baby dolls. Baby doll therapy works.
I have bought flash cards and we read from Dr. Seuss - just to keep her talking and her communication skills as strong as possible.
But she has also been mean and was a mess yesterday. We have a caregiver during the week so I can work - and have just qualified for respite care - for those times on weekends I need a break or time away. 216 respite hours - I must be stingy with them.
I get so tired and I cry. Alzheimer's and I have a love - hate relationship - I love my mother - I hate Alzheimer's. I can't imagine how she feels - the frustration and the confusion.
My father had it also. He died in 2002. Two of my mother's sisters had it and one of my dad's sisters had it. I don't understand it's purpose or God's plan with this hateful disease.
I hope to read through your past posts - and I am sure my comment was too long. I have a blog also - I write about mom quite a bit - but I also write about my kids, and every day life.
Hi B.R.M., I love that your reached out to me and shared your feelings. It's amazing how writing helps to "heal" us from this horrific disease.
DeleteI'm sorry to hear about your mom and I hope that what I write about can find you some comfort as well.
I share similar feelings about g-ds plans for my mom and at the time when my dad was also dieing(18 years ago), myself and for my husband.
Please stay in touch.
Lisa
assisted living for mentally ill is doing a great job.
ReplyDeleteThank you for you comment.
Delete