A PLACE CALLED HOME
I use to look forward to phoning my mom each morning. Things have recently changed since mom is living in a nursing home. Now when I call the nurses station each day, I cannot help but feel a lump in my throat. As of yet I have not been able to arrange any phone calls to speak to her. It's not that I haven't tried, I just feel that it is more important to hear about how mom is adjusting.
On Monday I will be seeing mom and meeting with her nurses, and hopefully I will then be able to arrange someway, of hearing her sweet voice. My husband did remind me that mom does not realize that I am not calling, yet for me it is so important to speak to her. This ritual has become part of my life for the last nine years. One that I have truly loved.
The joy that I felt from these phone calls, especially since I could not jump in my car and see her left me feeling connected to her . The distance between us at these moments all but vanished for the several minutes we were able to share. Through the years our conversations have diminished, as mom's disease has stolen from her the power of connecting her thoughts with her words .Yet somehow I still feel like I have deserted her.
During these last trying weeks mom has mostly spoken about her parents, especially her mother. Mom keeps requesting that she wants to go home. She told me that her mom called and that she is worried about her. She then added in that her mother liked me very much and wanted to know whose house I would prefer to go to, hers or her mom's. There was not much I could say except to leave her in her "new" world of fantasy.
It's both fascinating and profound to me how in her mind she travels back in time . She always wishes to go back home to her parents. A place for her that must feel safe and sound, and filled with much love. A place she calls her home. Mom just turned 89 years old, and living with her parents was many moons ago.
Mom is still unable to walk since her feet are now swelled. The nurse's were trying to get her to take a few steps since the rehab was not working. How can you give mom directions and then leave her to continue with the exercise, if she cannot even remember what she had for lunch directly after finishing a meal ? The nursing home is not to blame, just that everything is limited unless one can afford private care, 24 hours a day. Unfortunately for us this is not possible.
So mom remains in diapers because she is unable to get up and walk to a bathroom and is confined to a wheelchair. The director of nursing thinks that mom might be able to walk and that I should keep my spirits up. I must confess that my conversations so far with the staff have left me feeling somewhat secure. They seem knowledgeable and committed to their profession .
So this is my mom's new life, whatever is left of it, and this is now for her a place called home. We all need time to adjust, and I can only hope and pray that my mom will be well taken care of. For me I need to be thankful that I have been given this second chance to love this lady unconditionally.
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Lovely, Lisa. I'm sure your sweet mother knows how very much you love her. It sounds like the adjustment is going as well as can be expected. Sending you hugs and prayers... xoxox Ann
ReplyDeleteAnn, I always feel your warmth and gain strength from your loving words.
Deletexoxo Lisa
I can't imagine how hard this is for you being so far away. My father was put into a nursing home a few weeks ago. I only live 20 minutes from there so I can get there often, but my heart is still breaking. Perhaps you can get the staff to set up a schedule for your calls and they can get her ready for the call by showing her your picture. Even though she might not be able to communicate, I'm sure hearing your voice will provide great comfort to her. Or maybe make some audio of your voice telling her stories of your childhood and they can let her listen to them. Guilt is a terrible part of this disease and affects you whether you are across the country or across the street from them. You are always wondering what they are doing and feeling badly that you aren't with them. My family, although all local and visit a lot (someone visits at least once per day) are hiring a companion for him 3 nights a week. Someone that will engage him one-on-one and will give him individual attention. We are very happy with the staff but want something extra for him. Maybe a possibility for your mom? You can make it the companion's responsibility to set up the calls with you. I will pray for you as you continue on this journey. Know that you are not alone.
ReplyDeleteDear Anonymous, I'm sorry about your dad and I wish that I could give my mom all the same support. Yet this is something that we still need to try and work out. I reread two of your sentences several times for it hit me."Guilt is a terrible part of this disease and affects you whether you are across the country or across the street from them. You are always wondering what they are doing and feeling badly that you aren't with them." So, so true. Fortunately my mom still can speak. Next week I plan to set up the phone calls although I did get lucky and spoke to her today. I'll never give up trying to reach her each day ! Thank you for all your thoughts and suggestions. I really appreciate them.Best of luck w your dad. Lisa
DeleteLisa, I wish I could give you hug! I remember the day Mum stopped walking back in September 2007, it felt to me like the end of the world, she loved to walk everywhere. I had no idea she would still be here today, but she is, and although it has been a hard journey, somehow we seem to manage. I live in hope that she knows I am always there for her, in the same way that you are for your Mum. Take care and sending love and hugs to you both. Juliexx
ReplyDeleteMy sweet caring friend I feel like I could have written your words. I love you and thank you for all your support. Lisa
DeleteLisa,
ReplyDeleteHaving your Mom in a nursing home will never get any easier, you just learn to accept the fact that it's for her safety. I am very blessed to only live ten minutes from the facility so I'm able to visit every day. I am sure that the staff will be able to arrange it that either speak to Mom everyday, either she can call you (they dial) or you call her. I have seen residents have their own cell phones that they hold on to in the wheelchairs and the staff assist them when it rings, this could be an option also.
You are right about the guilt, it is the worst part, I will never get over the fact that I had to put her in a nursing home and having her ask me why she can't come with me when I leave. People often ask me how I deal with losing my mother over and over, that it woule be easier if she had cancer. I look at it this way, my mother is still here, she knows who I am she just doesn't communicate very well we are physically able to communicate through hugs and kisses, it's very important to me as I feel it is for Mom.
My thoughts are with you Lisa,
Lynne
Lynne, as always I love your words, your support and how much you care. Hugs, Lisa
DeleteIn situations like these, adjusting to the changes taking place is always a difficult road. Seeing someone you love dearly slowly slip away takes a huge toll. But I do think that holding on to any semblance of normalcy, like those phone calls, are a good way to make your mom feel secure and loved. You'll be in my thoughts. I hope your visit on Monday goes well.
ReplyDeleteVonda, I truly appreicate your comments. Thanks for taking the time to share withe me. Lisa
DeleteI'm so sorry for what you are going through. I also cared for my mother with Alz. What a roller coaster. I hope you can get phone calls arranged. I'm new to your blog, maybe I missed it, but is there a reason she doesn't move to where you are? Does she have family to watch over her in her town? I'm sure it would be better you you and her. Thoughts and prayers your way.
ReplyDeleteHi Tracy, I'm happy that you have joined us. I have been writing my blog since Feb 2011 and I know by all the emails I receive that I have been able to touch many people who walk the same path that I do. They have ALL touched me deeply. We all understand each other and can relate in many ways.
DeleteMy brother lives in Florida near my mom and he has watched over her for the last several years. Mom is 89 and frail and with deep searching within I thought that it was best to keep her in Florida. It's harder for me, yet I will be going frequently to see her and my brother will be weekly. This decision at moments does "haunt" me and bring up sadness and lots of emotions.
I also live in Manhattan and it is not easy to get someone into a nursing home, in an limited bed Alzheimer unit. I've had my mom on a list that I put her on over a year ago. They say it could take another 1-2 years for a bed to open since people with Alz can live for years with this horrific. Thanks so much for caring. If she originally lived in NY then it would still be difficult yet easier to do. Lisa
Hi Lisa, I came across your blog on facebook and I am certainly going to buy your book. My mom also has Alzheimers and we have been going through many of the same issues as you have. It is such a roller coaster...my mom was so vibrant and independent before the dementia started. My mom lived on the same farm her entire life and when we had to make a decision to move her closer to us, it was so hard for all of us, but we knew she couldn't be alone and my two sister's and I live within a few miles of each other. We slowly moved mom down by us and she basically lived with my sister for about 2 years, until, like you, we were unable to have her at home because of 24 hour care. She broke her hip and had rehab for several weeks. She also ended up on Oxygen, which she had never had before. We wanted her to go into the dementia unit but because of not walking and the O2, they wouldn't except her. We had to move here quickly, to a nursing home where she was at, only about 3 weeks. She then was weaned off O2 and was able to walk with a walker, about a week or so after this move. Now she began wandering and the nursing home couldn't handle her so we had to move her again. This time to the dementia/alzhe. unit. If they had just given her a little more time in rehab, she wouldn't have so many moves and changes...this, as you know, devastating for someone with alzheimers. Presently, this is about her third month at the facility. We have gone through so much of what you're saying, the guilt, wishing I could keep her with me but can't manage because we have to work, wishing she could go home and we could move back with her, but not able to. There is nothing easy about any of it and the emotions that we all go through are just awful. The dementia unit is very nice and we are happy with her care. They have been trained specifically for alzh. and how to work with mom and others. Still, it isn't the same. She has always been there for me and my sister's and it's hard not to be there for her every day but I have told myself I will do the best I can for her...telling her I love her when I see her and that I will see her soon or talk to her soon. I go into her world when I need to and answer her if she asks how dad is or her brother's and tell her they are all doing fine (they died several years ago). My mother is 83 years old. I know I have lost my mom in many ways but yet, she is still my mom...warm, loving kind and sweet,with still a sense of humor and it is not her, but this disease that wreaks havoc on her. I can tell that your mother must be the same way. You should be proud of what you are doing! I am sure your mother is very proud of you! You are not only doing the best that you can for your mom, but you are also helping others...what an "unselfish" person you are! Your mom is very lucky that she has you in her life and when you do call her or see her you will be bringing joy to her. I know this doesn't make the alzh. go away and there will still be many ups and downs but you obviously love your mother very much and she will feel that no matter where you live! My suggestion would be to find out what is the best time of day that your mother would be close to the phone every day, then you could just call her at the same time every day and the nursing staff will get used to that, plus, even though your mom might not remember you called, at that moment she will know. Love to you Lisa and thanks for what you are doing! Sharon
ReplyDeleteHi Sharon, I'm left a little speechless after all that you have shared. I am so sorry about your mom and we both know and understand how horrific this disease can be to our family and ourselves. After you read my book or go back and read many of my blog posts you hopefully will be able to find some contentment and happiness within this tradegy.
ReplyDeleteI have been able to be thankful for all that my mom could share and I know now that somehow I must really reach deep into my heart & soul to reach that place again.
I know that if my mom could say anything to me knowing what is going on she would tell me not to be sad and not to worry. So once again for my mom I only hope that I can reach/ find this place of being again.
Sending much hugs and love to you and your mom.
Lisa
Lisa, I'm so glad we connected, and I'm so thankful for your blog posts. It's so important to know we aren't in this difficult journey alone. I keep praying for you and your mom. In the last hour I posted a photo of my parents, whom I recently spent a week with in Ohio, and did as many engaging activities with them as I could (now they're exhausted!)... one was tying a fleece baby blanket for their 15th great-grandchild.
ReplyDelete"When necessary, use words..." Isn't that the truth?! I'm so thankful for phones and email! And in my case, for the Christian Home Caregivers who are such blessings for my parents.
Blessings to you and hugs,
Jane in STL
Jane, sounds lovely. 15 great grandchildren? one big WOW. hugs, Lisa
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