For the last eight years my brother has been watching over our mom in a different way then I can. They live in the same area of Florida ,while I live in her home town of New York. After returning from a recent vacation, I knew that there were some uncomfortable, unsettling decisions that would soon need to be answered about our mom. I had tried to avoid thinking about any of this before my trip to Italy. I was of course, unsuccessful.
We had spoken about some different options before I left. All of them seemed to be that mom would need to go on medicaid and be moved into a nursing home. A decision that left me feeling upset, as my stomach tightened with knots.
Mom had been sounding great since I have returned, and I was well aware that she had two very "good" weeks. "Good", as in no urinary tract infections that alway seem to cause her excruciating back pains and hallucinations. These symptoms never disappear until an antibiotic quicks in. Funny, how I foolishly sound as if I am now a pro, in the world of UTI's and Alzheimer's.
I realize that seeing her in person, will confirm all the simple things she can no longer do. The everyday tasks of brushing her teeth, combing her hair ,or even knowing to change her clothes has no meaning to her. Day is night and night is day. There is no sense of time. Actually, this has been going on for several years, and in some ways she has miraculously been "holding"on.
I am thankful for this and not one day goes by when I take any of this for granted. Yet in between mom's "good" days, I am aware that I hear less laughter and aliveness in her voice.
Does mom have any idea what is going on? Just yesterday, when she was handed the phone from her caregiver, I questioned how she was doing. Her response was both interesting and strange. Mom answered that she was doing okay, yet she went on to explain that for the last several days she was not feeling so well. She described that she rested and is now doing better.
My brother shared with me that she is getting frail and has trouble walking herself to her bathroom. Her caregivers say that this is not necessary so, yet that I should prepare myself for my visit with her. They explained that she is not the same as the last time I saw her.
I told to my brother that I felt that I could not be part of the decisions regarding mom and a nursing home. I found it all to upsetting and that I was willing to relinquish and surrender to whatever he thought was best. Momentarily he responded ,"okay".
As for now this decision, although I feel ill when I think about it, has left me feeling that I will be able to cope in a better way. All of my strengths that I have been so proud of, are now hiding as if I were a frightened young child, as mom continues to drift away.
I only want to brighten her days and not be filled with feelings of guilt. I want to be cheerful with her each day, as I cherish the days that we can still share. I love as we sing some tunes and she makes up the verses of words she no longer knows . I love our spelling games which she still can amazingly do, and I continue to try and hear the sounds of laughter that we once frequently shared.
My mom today know matter what world she lives in fills my heart with deep love . She will always be my hero. Hopefully one day there will be a cure from this devastating disease. A disease that destroys families and removes ones life forever.
My book My Mom My Hero is for the special people in our lives. A story of love and relationships. Available on Amazon & Kindle worldwide.
Hold on tight to those memories, and the moments that you share with your mom. I do wish you would reconsider leaving the decision to your brother. I think it might place a bigger burden on him, and guilt on you later on. Just my opinion! You know your family better. I know one thing, though. Your mom is loved by you so very, very much. Dacia
ReplyDeleteDacia, I am torn with my momentarily decision. I did discuss this in my Alzheimer support group just yesterday and was given lots of support with my feelings(which can change).I so appreciate you reaching out to me with your feelings and thoughts. Thanks again. Lisa
DeleteToday my mom had to sign her signature to a document and my dad was surprised when she just wrote it out, without thinking. Today was a good day. It is so hard as mom is only 70 now. She was an RN for 30 yrs but does not remember any of that. I can still make memories with her, even if she cant remember who I am. I have your book on my kindle and it helps to see that I am not alone in losing the mom I used to be able to talk to about anything. She was one of the smartest people I have ever known. But now, we can laugh and giggle with my 9 yr old as if we are both little girls ourselves. This is the new mom I get to love even more.
ReplyDeleteAnony, we cannot remove this horrific disease from our mom's yet we can love and cherish what we still have. Love that you can embrace with your daughter and mom the love that you still have. That is so special.
DeleteLisa, I just read your book My Mom, My Hero. Our mother was diagnosed last year with the beginning stages of dementia, however, we had seen some changes in her a year or two before that. You really helped me to know how to react to our mother at times. She is still driving but I feel she is not safe.......and that we are discussing with her dr this week. By reading your book made me look at my mother in a different way. Thank you for that. Her mother had Alzheimer's and was very mean and of course, didn't know anyone. I hope and pray to God that is not what we will have to deal with but with this disease, who knows what is in the future. I'm so thankful I found your book on Amazon and now your website. I know that my family is not alone and now I know I have another source of people that I can converse with. I just love and cherish each and every moment that we do have with her. And wish for more good days with her and her laughter and spirit. Our mom just can't sit still and is and always has been a sweet person, caring and loves to laugh and be around people. I embrace each day that I have with her. These days are so special to me and I just tell myself "one day at a time". Thank you again for writing your book.
ReplyDeleteAnony, I am so touched by your words I wish that I could write directly back to you yet I have no email address or name. Please know that I am always here for you. We are ALL in this together. I'm so sorry about your mom and if you can stay being grateful and thankful it will be an "easier" journey. This post was a little heavy yet alot of what I have written has humor and is "uplifting".hugs to you & mom. Lisa
ReplyDeleteI hate every disease but there is something about Alzheimers that is especially cruel, to "erase" the life away from someone is so callous. I pray that you and your family make the right decision for your Mom, I know you will. I am sure whatever you choose with be the best choice, its so obvious that you all care deeply for her. Remember that there are a lot of very good Nursing homes and Facilities who specialize in taking care of those with this disease. It will help ease some of the burden that you all feel and you can make the most of the time you have left with her, and it can be less stressful. My prayers are with you all.
ReplyDeleteLisa,
ReplyDeleteMaking the decision to put Mom in a nursing facility was and still is the hardest decision I have ever had to make. It still haunts me today, two years later. Sometimes our loved ones safety has to take priority. If you can find a quality facility your Mom may actually benefit from the activities and social interaction. I will tell you to visit the facilities several times especially unannounced and during off hours, also check with family members. I have been very fortunate to find a very nice facility very close to me so I'm able to visit everyday, and I don't hesitate to speak up if something is not right. Also, be careful to research any drug they may want to put Mom on.
Feel free to contact me via e -mail if you have questions or concerns.
Thinking if you
Lynne B.
I can not believe that I have found this blog. Just when I needed it the most. Not very computer savvy. ..and using my cell. .but would love to figure out how to follow this. Mom lives with me and turned 80 on June 7th.
ReplyDeleteHi Anonymous, So glad you found me. This is the link to my blog www.MommyHero.blogspot.com
Deleteand you will be able to read my blog. Sorry to hear about your mom. Suggestion- go back and read some earlier posts.
Love to hear from you if you do see this message back to you. Lisa
Hi Lisa. My mom stays at our house. She still drives to her house down the street, her church, and nursing homes she visits each week. But she is a horder and will argue with a fence post! Thank you for your book. I've told my brother about it. Mother will be 89 in September. She has dementia & is on meds. I've really enjoyed it and it helped me to do my best to not be hurt when mother is mean or sarcastic.
ReplyDeleteEllen Rumpff
Hi Ellen, I'm thrilled that my book was able to maybe see your mom at moments in a different way. My mom will also be 89 in August.Sorry to hear about your mom and know that even when she says upsetting things to you it is not really her but the disease. Your mom I'm sure loves you deeply. If you get a chance maybe you can post a review of my book on Amazon. Please stay in touch. Hugs Lisa
DeleteLisa, I just finished reading your book on my Kindle this afternoon. So many times I said, "Yep! I know that one!" I've written about my mom and Alzheimer's as well. My mom started showing signs maybe 20 years ago. She'll be 83 this summer. No, she doesn't know me any more, but she still appreciates the ice cream and chocolate I bring! You can see a preview of "Save the Bones" on Amazon. www.tinyurl.com/savethebones
ReplyDeleteBest wishes.
Hi Shannon, Thank you so much for your comment. I look forward to reading your book as well. It is amazing how long some people live with Alzhiemers and how others fade so much quicker. Good luck with your mom. Thanks again for reaching out to me. Lisa
DeleteLisa,
ReplyDeleteI was not able to completely read the posting to long for me, but I can relate to your mom and her answers, they come out of my mouth as well. We start to feel ourselves living with you but not and sleep and rest seem to help. Just keep loving her and do what you can. Only suggestion form this person with Alzheimer's that I can give.
God Bless,
joe
Thanks Joe for your comment and please stay in touch. Lisa
DeleteThank yu for the article. My mom and I were never very close. Now sometimes I feel angry. I have a hard time spending time w her. I get angry. She didn't make provisions for herself as far as taking care financially. She spent her money as fast as she earned it .now we have to figure out what to do...
ReplyDeleteJoseph, maybe the only one that you are now hurting is yourself. Holding on to the anger can eat away at you. My dad who I had favored as a child passed away 18 years ago and left my mother only $6000 in a will. I have these thoughts of being angry at him since my mom now will be going into a nursing home and must be put on medicaid. What good would it do me. The situation with your mom will not change the money issues are real. Please try to come from love not anger for your sake and your mom's. She is your mother. My mom and I were not close either I was daddy's little girl and today I love my mother unconditionally. It is so freeing and wonderful to feel love not anger. Hugs Lisa
DeleteLisa....I encourage you to always be a part of the process with regards to your mom's welfare. This is important to your mom but equally as important to your brother since he is the one that is nearest to your mom and makes the on the spot decisions. Do your have a POLST form for your mom?
ReplyDeleteAs for where your mom needs or should be you will want to have some feeling of peace with this decision. Make a trip and look at several options before the plan ever needs to go into effect. If she can stay at home with caregivers for now then continue this way. I don't know if your mom has a night shift that is with her at all? My mom quickly needed 24 hour care but the blessing is my father left her enough with the finances that she can. Most of us cannot do this.
If your mom does go into a skilled nursing make sure you personalize her room and make it feel like "home". Pictures, a quilt, a throw, a comfy chair, whatever it takes to make you both feel it is less institutional.
I love my brother but since my mom was so hard on he and his family for so long, he doesn't and hasn't seen her since Fall 2010. I can't even describe how confusing my heart and mind feels about this. Regardless of the relationship they had she wasn't evil. I don't feel he faces the reality of our mom and her fading away. He reads my blog and he does from time to time say how he feels for me but I've yet to hear him say how sad he is for mom. He doesn't seem to want to come visit (they live in another state). It is important to keep family ties....and I'm trying to be as patient with him as possible, to hold my tongue and understand that while he is in denial, he needs to work through this on his own.
Take care....keep writing....