I learned this recently from a gentleman care giver on line, at least it is what I believe to be true after some self introspective thought. That is, you will be who you are and will be, before and after, no matter what you endure during this life. Your 'feelings' may certainly change, but the core of what defines "you" will not.
Very interesting, Joan, to read your self-description. Sounds like--at least on paper--you and I are very much alike. I love people, and need contact, but I completely lack the coffee-klatch ability that allows many women to form networks wherever they live. (and I am ferociously independent.)
I audit classes now (for as long as I can get away with it!) I write for sanity, I dreadfully miss the company formerly provided by my husband. I don't know what the h*** I'm going to do once this ridiculous ride is over. Probably book myself a berth on some kind of educational sailing ship cruise and just take off for a couple weeks to think about it, away from this very confusing life.
Why is it confusing? Because what I MUST do is clear as day--my job is to take care of this very deserving person who deserves the kindest final years I can provide for him--but frankly, it bores me out of my skull. I am lonely, isolated, and (except for the AD hassles we all know too well,) unchallenged intellectually.
I don't know what I will do. My spouse will be gone, my children will no longer need me, I will not have (or, hopefully need,) a job, and the world will have--as far as I can tell--no particular use for me. So, I guess, unless life drops something in my lap, I'll just have to find a way to please myself.
Joan, Joan. ----You’ve done it again. You have written another excellent blog and asked us to comment on it. But your ground rule of “No Religious discussions” makes it so difficult for me to contribute. In my life and especially my spiritual life, my Beliefs are just a part of your question of: “Who am I?”, I am so sure that I have been called to be a Witness for my deep belief in Christianity. I really think that we can not address this subject jproperly without including our deep spiritual beliefs. I don’t care if you are a non believer, an atheist, a Muslim, a Buddhist, etc. Something as emotional and involving our soul is just a very fundamental part of living with Alzheimer’s. You have read Carol’s Blog and I could not have written it without including my spiritual beliefs.
Beyond that concern, I will try to talk about my answers to your question if you will allow me to include my Religious beliefs. ??????? love bill
What a super topic..and something I have yet to really consider but is one of those areas we need to before we are there just as we have to consider what and how we will manage as this miserable disease invades our homes and families even more. I have one friend, whose husband died several years ago of cancer and later her mother of AD. She has her gentleman friend and her kids and they travel..do all sorts of things together and apart too. She has a full life. Her view is life is for living and I' am going for it before I can't walk or get AD myself..getting AD is one thing she fears getting and that is what drives her now.
For myself, I am going to spend some time thinking about this very seriously. I can't think of a better topic for now.
Who AM I? It has been a litle over a year since my husband died and over ten years since his disease interrupted ourserene life with the catastrophe of a meteor burning away all it came into contact with. Ten years ago I could have identified myself readily....wife , mother and grandmother, young and vital not looking like my chronological age and not thinking about it much either. My best friend was my husband, we loved travel, playing golf, talking about anything and everything with one another and living the "good life". During the subsequent years, my body became diseased, physically old, no time let alone interest in anything but the demands of caregiving. My life, joined to his, was consumed with visits to the NH, research into the realm of ALzheimers , the effects, the drugs, the never ending awareness of the disease and my responsibility in caring for my husband. I had no interest , or time to think of myself and the deeper parts of my psyche.
Now I am truly alone and I am beginning to ask myself , How can I fit myself into my surroundings as a single woman? THe truly paradoxical aspect of all this is I am single once again but don't feel single...I still feel married. I still feel parts of me missing, the other half of me gone away on a long trip. One thing I do know, I am no longer the person I was ten years ago , I just don't know how to replace the missing pieces that have been destroyed during my sweetheart and my battle with Alzheimers.
First I have to agree with everything Emily has written. Who am I? Tough question – One of the toughest you’ve asked so far – for me this is a doubly difficult situation. For the past 2 years I have been alone – legally I am not a widow, I still have a living husband, for how much longer is anyone’s guess. In some instances the State calls me a widow – don’t ask why – and yet they will not pay me my husband’s life insurance because he is still alive. I live alone and he will never be able to come home again. Everything else has been done – he has been improvised, his care is paid for by Medicaid, he is allowed $50 a month. Big deal – he has no idea what money is or how to use it. The nursing home provides all his care and meets all his needs. Our funeral arrangements are completed, cemetery plot purchased, headstone purchased and engraved, except for the date, and the obituary has been written. Now to the question – Who am I?? I am a middle aged (68) year old woman who’s 4 children, and 2 step-children (40 – 51) no longer need her, my grandchildren feel, at the age they are now – it is not “cool” to hang out with Grandma any longer. There are 11 of them from 19 – 28. Though ages – too young to be grown, and yet too old to be considered ‘kids’ that still need to be ‘cared’ for. As for the 8 Great Grandkids – they are all living too far away for me to be involved in their lives. I am very lonely – I have no one to talk to, no one to eat with, no one to discuss the day’s events with. No one to travel with – I cannot go far because Ron’s condition is such I may be called in a moment’s notice to go and be with him. As I said before I live alone – I have a home that needs to be cared for, most of which I do myself. I hire the grass mowing and the snow plowing – but I do everything else. Today I had to figure out how to fix the toilet to keep my water bill in check. There is always something that needs to be done. For the most part I live on the edge with a cell phone in my pocket. Part of me longs for the day when I can go where I want, when I want, and return home when I please. On this day my concern is how much longer he will have to linger like this. He is not in pain, and for the most part seems to be comfortable and relative happy. He has no idea who I am or why I am there with him. He looks at me with this bewildered look – no comments because he has not spoken for the past year and a half. His movements are random – he must be lifted to be moved. He is a complete invalid – unable to even scratch his own nose. Since having a heart attack in late February, he can no longer eat solid food – only liquids and modified liquids. (There will be no feeding tubes etc used.) Was this caused by oxygen deprivation, or is it progression of the disease?? No one can say for sure. When we ask who we are – not one of us would choose to live this way. He did not choose this – he was chosen. Why, I will never know. Something good will be coming from all of this – yet I have no idea what or when. Yet, with all of this, I have to take him to the DDS tomorrow to have his teeth cleaned. Does he really need this? I am, and will always be his wife, I was his caregiver – this is my most important roll thus far. I am a Mother, Grandmother, and Great Grandmother. I have developed a strong circle of friends –caregivers, former caregivers and non-caregivers. I do volunteer work (Project Lifesaver) with the Sheriff’s Department – this has brought a new element into my life. I take a couple of classes (One on Maintaining Your Brain) because it is my hope this never happens to me.
I do not feel like this is an ending – Ronnie wouldn’t want it that way. It is a new beginning. A new path I must walk – unfortunately alone. I could sit around and feel sorry for myself, or I can make my life anything I want it to be. I will have more time to write, maybe I will go back to work, I will have time for my photography – a long time ago set aside. I can go out to eat – meet people I have never met before. It is a new chapter in my life. When you first married Sid, did you sit down and ask yourself – Who am I now? Oh, I am a bride, now what? No, you met each day with a smile and said thank you. We begin each day with a smile, and end each day having made it the best that we could at the time. Not asking why or why not – just doing. Life is meant to be lived and enjoyed – I do not believe it is ours to question. Take what we have been given and try to make the most of it – when we do this we do not have regrets, and I do not think we have to ask why or why not. I am not trying to preach to anyone – my faith sustains me. I believe there are good things awaiting all of us – we just have to seek them. Remember the good times, cherish these memories - look ahead. Each day is a new beginning. It is my choice to try not to dwell on the sadness and unhappy times I have had to endure over these past 12 years. I have had my share, but I do not dwell there. Our lives are what we choose them to be. If I choose unhappiness – I will be unhappy. I choose happiness – I choose to try to be happy. I will have down days, sure – but they won’t all be that way unless I allow them to be. Who am I?? I am Ruth, and I await each day to see what is going to happen. I will do what I can to make each day all that it can be. No one knows what the future holds – we will all await tomorrow together.
Lincoln said: People are just as happy as they make up their minds to be.
I know people who appear to have everything & are always uhappy, others have adversity & still seem happy. I'm w/Lincoln & Ruth. I've had my sorrows & tears, but I choose to be happy anyway.
In the last 4-5 days, I have thought about this subject? The first thing I did was look at who have I been for the last 50 years. I feel that the following describes my life best: A Christian A Husband A father (son and daughter) My job(s) I have made mistakes in all these endeavors, but I am still working on all. A man probably has more of a love affair with his job than a woman does because of our respon sibilites of being the provider, the man of the house, A good and dedicated worker. I no longer work for money, but do feel that I am serving as a witness in all four. I realize that friends and strangers still look at me as to how I am handling these 4 areas of my life. My life as a husband has really changed with Carol now in NH. I told my daughter that I believe that I Love Carol more now than I did in the previous 50 +\- years. Because of my Caregivers Dimentia, I have trouble with my memory of her in the past. I hear that memory will return later on after the final stage. I have been a Sales Engineer for most of this time in the Construction Industry. It is not like selling a service or product but it is selling a Metal Building System to Dealers while helping the customer do a better job of his construction solutions. I retired several years ago when Carols AD became so devastating. But I have continued to work at being a witness for God.
After Carol, I am not sure what I will do or who I become. We always like to go to the Beach, usually with whole family, but kids and grandkids are all growing up and I'm not sure of my new role. I have always like to travel, with Carol, but not sure my body can handle much traveling. No money to do it up real good. I live in a little community that has a nice 9 hole, par 3 golf course and we are on a lake that would be easy to bank fish. But right now, I seem to have lost much of my "GET UP AND GO!!!" I have always worked at and for my local Church. I was part of a Prison Ministry and would like to renew some of that. But whatever I do or go, I plan to continue to be a servant and witness for God. Without Him, I don't think I could make it.
I am glad we have this opportunity to kinda express our thoughts as to "Who am I" bill
Ruth, I had not fully realized what all you have been through and are going through until now. I hope that I can be as strong as you should my husband continue to live as long as yours has.
You said: "It is my choice to try not to dwell on the sadness and unhappy times I have had to endure over these past 12 years. I have had my share, but I do not dwell there. Our lives are what we choose them to be. If I choose unhappiness – I will be unhappy. I choose happiness – I choose to try to be happy. I will have down days, sure – but they won’t all be that way unless I allow them to be. Who am I?? I am Ruth, and I await each day to see what is going to happen. I will do what I can to make each day all that it can be. No one knows what the future holds – we will all await tomorrow together."
Those are my thoughts as well. I choose to try to be happy. Our home was always filled with laughter, and I make certain that we find something to laugh about each day.
Bill, I admire you and maybe my GUAG (get up and go) is hiding in the same place yours is!
Bettyhere, I'm so glad you have stayed with us and advise us...I haven't told you that in a long time, and wanted to re-tell you!
Who Am I? I am once again, a Work In Progress. The widow part of me, misses the caregiving, it gave me a purpose. Now I have to figure out what to do with the rest of my life. I have a house, 2 acres of land that needs a whole lot of attention, a garage that shames me, it is so cluttered, and a family that I struggle to enjoy. I don't have the money to travel to often, my friends are all 2 1/2 hrs away or more, so that leaves me with me. I love to read, knit, kayak, bike, take nature walks, take pictures. I love laughter, sitting by a campfire, going out for dinner and a nice bottle of wine, watching a videa, but all of these things remind me of Jim and it makes me miss him all the more. I wish my back was in better shape, I think I'd join the Peace Corp. Jim's illness coincided with me going back to school to become a medical assistant. I loved that job. I stopped to care for him after only a year. If I go back to work, after insurance, taxes and gas money, I'd make less than I do staying home. So how do I find it in my heart which direction I should go, when will my Spiritual Tank feel full again, and how do I get MY Get-up-and-Go, back on track. It's not quite a month, and a horrible one it's been. Our oldest grandson is going to continue in residential care, and it kills me, but he is just not capable of controlling his anger right now, our little guy is so glad to have his Mom back here, so he needs me much less, my Mom, is recovering so well from her hip replacement, she is very independent, but also very happy to just putter around the house. So, this all leaves me as I started, A-Work-In-Progress..........................
Susan, I'm glad to hear the updates on your family. I'm glad your mom and daughter are doing well... Now take your camera and go out and capture the spring!!
When I first saw this thread, I couldn't react to it. Too much was going on with DH at that time. This morning, DH is with our daughter. I'm reading through and thinking how much I appreciate this place and the inspiration from everyone. I don't usually take time to think about who I am anymore. The weeks and months are too focused on how and who DH has become..and how we can best provide for him. I haven't painted in way too long now. There is a still life setup waiting but for some crazy reason, I haven't been able to focus intently enough to drag out a brush. Nevertheless, just this week, the daughters are asking me to consider how I want to live, after. It was startling, in a way..because we have so much further to go I think. So many more years to be taking care of DH that to not be doing creates such a vacum, it feels like being a fish out of water. And yet, while I try to find a good placement for him AND a good placement for my mother.. My children are trying to help me consider what and how I am going to reclaim myself but I think it will be ok. I think in due time, things work out.
I am just following the Yellow Brick Road. Don't know where I am going and when I'll get there. I just have Faith that when the time comes I'll find some time to reclaim myself and be able to sit on the porch and watch the birds and butterflies. Who am I kidding? Never have been able to sit on the side lines. I need to be in the middle of what is going on.
Bama and Mary, believe me, if that is the way you were that is the way you will be again.....I might have lost a few steps along the way, but the real me never fully went away.....I still laugh and have fun and enjoy every one and every thing that I can. Sure, I lost my husband, but I didn't lose myself.
I'm working on who I am as well. I'm in a period where I can't go anywhere without my husband, but he doesn't actually need much in the way of hand's on caregiving, so I've decided to use this middle stage to figure out who I really am, and what I really enjoy, and what I really like.
Don't have any answers yet. Some things I thought I was going to do have turned out not to be all that interesting. And I haven't found the stuff that will take the place of what is now boring.
I'm also working on being happy anyway. I'm counting my blessings and noticing the little things in life that make me happy and allowing myself to be happy for no reason at all.