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Senior Member |
Now that you have more flexibility to get out of the house, how does the world out there look to you? It probably isn't quite how you remember it. How have your priorities changed?
[This message was edited by Casey on November 21, 2002 at 07:42 AM.] |
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Senior Member |
Melissa, wiser words were never spoken on this subject. The issues of caregiving do not end with the passing of our loved one(s) because caregiving is something WE experience. There's a before, a during AND an after.
It's good to see you posting again - we've missed you!  "She ain't heavy; she's my mother." |
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Senior Member |
Dear Melissa,
I can't begin to tell you how much I appreciated reading your post here, every word you've written. I've realized so much, I see things so differently, I regret, I forgive myself (tho, not enough), and I remember my life as it once was before caring for my folks as a life I'll never have back again (at least, seeing it all the same or participating in it with the same abandon I once had) and now that I only care for one parent, you would think that my job is 1/2 as hard but it's not. I'm still grieving for my father and it's been over 3 months now, still wishing I could have realized that it was time that should have been better spent, emotionally. In time..... And of all times to read your post, for me your words have appeared when I've reached new heights in intolerance for the care I'm giving to my mother. My father was difficult to provide for physically but an easy man to love. My mother who's blind and frail and in bed 24 hours is an extremely difficult person, emotionally to deal with and I've been screwing up royally, losing it, becoming less tolerant every day. Every day I blow it more than the last day and every day I tell myself that these days will be difficult to forgive myself for someday. I'm keeping your post where I can refer to it, daily. Thank you, thank you, thank you Melissa.
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Senior Member |
I was reading Casey's opening post for this thread and considering my answer. Though this year marks the 5 year anniversary of the deaths of both my father and mother, I do not feel completely qualified to answer this as I am still caregiver to my life partner and still suffer from cg stressors.
But.. I do have a couple thoughts, having had five years of not-as-much insanity in my life to reflect on the years I was cg to my parents and other family members along the way. I definitely have learned my shortcomings and my strengths over the years. You will, too. You will not do everything perfectly, no matter how hard you strive. You were born human and you will screw up. Work with good intentions, learn from your mistakes, and forgive yourself. Appreciate the strength it requires to do this "job of love" and all the new talents you will acquire along the road. You will learn much. You will do much. You are stronger than you know. You lose some of yourself when caring for another. When your caregiving ends, not only will you need to deal with grief, you may find yourself at a loss what to do with yourself and then wonder just who "yourself" really is any more. Give it time. Dont rush yourself or let others rush you to jump back into the world full-tilt. Your emotions may well be all over the board for some time , but eventually you will begin to heal and find yourself and your path. Casey is right - the world will not look as you remembered it - to put it mildly, but it's normal even if it is a bit shocking at first. Your priorities may well still include a spouse, children, job, etc.... but don't forget to make yourself a priority as well when you are in this vulnerable spot in your life. Today... I am still a caregiver, but my partner does not have dementia and is more physically capable than my parents. We are able to have coherent conversations and go out flea markets and restaurants and laugh together and play with our four-legged children and though her health issues worry me often and there is definitely stress in my life, I also have more time and ability for joy in my life with her than when I was stretched 5 ways caring for several people. I do see differences between how I was then and how I am now, and sometimes I get frustrated because the freedom I do have also allows me to realize how much more I could do if I did not have the stress and limitations that go along with caring for Debbie and yet I also know how deep my grief would be if she were to die. I know all too well how important love is and how quickly life goes by. On balance, I choose to be where I am with full understanding of all that entails, and I am at peace. May all of you find peace as well- Melissa "Whatever tomorrow brings, I"ll be there-with open arms and open eyes" |
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Senior Member |
http://eldercare.infopop.cc/eve/forums/a/tpc/f/56360781...711056723#6711056723
BWB: I thought you might be interested in reading about this very topic from a while ago. |
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Senior Member |
MB, you do have a point. After I wrote that post, I thought about the people in my past, who were in similar situations. In my younger days, I was afraid of death, the grieving, I might not have known the comforting words to say, or maybe I was fearful of breaking down in front of someone who didn't need to have someone crying in their midst. Yes, there are times when people I knew had lost loved ones and I didn't go....I wish I could go back and comfort every one of them today. Bake a cake, stop by for a visit. If I look at the younger girl I was, and try to see that in those who haven't acknowledged our loss, maybe I won't be so quick to judge or be so harsh. Again, we don't know what is going on in other people's lives, hearts and homes.
 I can only try to do better, and I will!!! |
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Senior Member |
BWB, i certainly can relate to what you have said.Once we have cared for a loved ones we begin to view things so different.
I feel those who have chosen to turn their backs on one in need will experience a time when they will feel what many have felt.To me, caregivers are no different from any one.They are able to do and say the same things they always did.They may be limited with time but that does not excuse people for avoiding . I have some friends who did alot of talking but really not there.But I see that as their problem and choose not to travel that road.The one thing that has changed is I will be there for another if I choose to be.Not because I feel I should and all that other baggage.I remember all the times they let me down but I do not let tat determine how I respond to them.What it did show me was their are so many out there who claim to understand what we do but, have all the answrs but once they are faced with the same situation, thay fall to their knees.Some are good at supporting but not hands on.Actually this was good for me because I learned that those I felt were so perfect with no short comings was my delusion.I stay civil, except to my sister in law and that will never happenNot because of me but because of my beautiful and generous mother whom was one of many threats to her. When time heals you will put all this into perspective and find you are a much better and more engaging person then before.I think the confidence gained changes our outlook on others because our view of our self has changed. We do because we want to.If someone cannot accept then we tell them to such my nose. |
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Senior Member |
BWB, when I get to feeling annoyed by the disappearance of folks from Mom's (and my own!) life during all this, I feel compelled to look over my shoulder a little and wonder if at some previous point in my life, I walked by someone in a similar position and just didn't realize... just didn't "get it"... We caregivers are in an ultra-reality kind of a place with our loved ones... unless one is THERE, ya just don't know or understand - we deal with heavy issues most folks shrink from pondering. I think we all have a way of gravitating away from folks with chronic troubles. Or we really do MEAN to call or stop by, but the days of our lives somehow slip by without taking action and the next thing ya know, someone has passed on...
It doesn't do much good to look over one's shoulder... I hope that this experience will make us all more sensitive to the needs of others in our lives and realize that the clock is ticking for all of us - make the time for others and don't put it off! Just my musings... "She ain't heavy; she's my mother." |
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Senior Member |
BWB, One of the hardest things about the job we do is that whether we are full time, part time, or round the clock , for a day or twenty years, we are all temporary. Sometimes we get started in a crisis situation thinking we will only be seeing through for a short time, and 5 years later it has become the breath we breathe. Others of us, as happenned with you, start to rearrange our lives thinking we are in it for the long haul and "smack", things change so fast it makes your head spin.
* the crystal ball (*) is in the shop>>>> |
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Senior Member |
Unlike most of you, I was only a temporary CG to my fil. He had day and night caregivers, but I was the one who took him to DR. apt's, called his Dr's, called the hospice nurse,picked up medicine,,,,,and so on. I am still feeling such a profound loss, he has been gone only 8 days. I know that we are just in the beginning, I hae also lost my grandparents.
And yes, when I go out to run errands, today for instance as I was sitting in the pharmacy waiting for my mil's script, I was watching people, looking at their faces, wondering if they could see my pain, my loss, my experiences. What I saw came back at me, how many of them were hurting, going home to someone desperately ill? Had that man recently lost someone he loved? What about the sad, tired looking lady? Was her husband/child/parent fading away? Or maybe, was she? There is pain all around us, we just can't see inside a person's heart. I will also acknowledge, that there are people we used to know as "friends", who never came around after my fil started his dementia, and then his subsequent strokes. I agree with those who have stated it earlier, I no longer have time to hear their pity party stories when I pass by them in the supermarket or the big "W", our pain was ignored until his passing and funeral. It was kind of like, they were making the rounds, visiting people who were greiving over their loved ones. To be "seen", if you will. I have a long memory, and I don't like to be bitter, in fact, I always say that I am "bigger than that", but right now, today, I feel that our family was used so they could look good as the visitors! That my friends, is something we could all do without. One of these women, came up to me after the funeral with tears in her eyes saying "it just hit me, he is gone?". I had nothing to say to her, hadn't we all been "HIT WITH IT"? I could not even speak, thankfully someone came up to offer condolences and I stood and spoke to them and walked off. I did not have the energy to console this woman who had not offered one phone call, card, or even taken the time to stop by. How many of us here, if we could come to each other, would only offer maybe a little food, lots of comfort, and maybe just sit with each other for while? That to me, is love, the kind of love and understanding I want to offer those in need, and those I care about. I choose to only surround myself with family and friends who truly care and want to understand, how much richer could life get? This message has been edited. Last edited by: BlueWaterBeach, |
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Senior Member |
Nancysdaughter, first allow me to welcome you.
I too have been a caregiver for a long time and recently lost my mother and my aunt. We do get lost in the world of caregiving and out of touch with the outside world. IN MANY WAYS IT BECOMES A SAFE HAVEN BUT NOT HEALTHY. We all owe it to our selves to go on with our lives as our loved one would hav done if they had been able.Lost time cannot be recovered. I think the only gene that can be tested for is EOAD.I maybe wrong.We had a father on this forum who had his children tested as his wife had the EOAD.To each his own but I would not want to be tested.It is like signing us up for all negative for our lives,Once one knows they would dwell on it and possibly loose quality of life we can have Always looking for a symptom, .To fear be afflicted is normal.Each who has seen the symptoms know what can happen.I want to climb that hill when I come to it |
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Experienced Member |
Having genetic testing for AD will not tell you that you will or will not absolutely get it. The problems are that getting tested can have a negative impact on your getting health insurance, your career and even personal relationships. The overwhelming majority of AD victims do not have AD in the family--no one knows why they get it. A small percentage of victims do have specific family genes, but that is still no guarantee everyone in the family will get it. However, you can go with statistics that are in your favor. You might have a greater risk (but no solid guarantee) if 2 generations of 1st degree relatives (parent, sibling or g'parent) on same side of family had AD, but not any other form of dementia; and onset was before 65 in both relatives.
We caregivers devote our lives and souls to our loved one, often, like I did, for 10 years. When they leave us we realize how out of touch we were with the rest of the world. Now, it is time for you to get back into the 'real' world, we all need that. Don't worry about testing--as has been written, there's nothing you can do about any of it anyway. Take care of yourself now. |
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Senior Member |
NancysDaughter, so sorry for the loss of your dear mother. I will be in your same shoes (except a decade or so older) when my mom passes. Feeling like an "orphan" is a difficult thing to get past at nearly any age. One of the indelible experiences that will go with me is the extreme frustration of dealing with bureaucracies. The passing of my mom will not diminish my anger, exasperation and intolerance for them, yet I will continue having to do so as long as I live.
I hope that you will take some time to rediscover yourself. It's an often exasperating process, but a fascinating one. Working through your mom's death will take some time, so while that's going on, you also have the opportunity to really "become" your own self. At your age, there is a lot ahead of you! You have not quite reached the "feet of clay" time in life - take a few chances in pursuit of your life's dreams and your heart's desires. Some important "facts" of life have been revealed to you a little early in life via your experiences with your parents' care. Go for it and grab a double-fistful of happiness along the way. As for the genetic testing, personally I am not interested. Until they come up with a cure, it doesn't matter if I KNOW I am likely to have AD (or something worse!)... Let's live life to the fullest every day and whatever happens at the end of the line, hopefully that'll be a long time from now and hopefully, better treatments for the diseases of elderly folks will be available. Many blessings for your courage and steadfast loyalty to your parents in their times of need! Please let us continue to hear from you! "She ain't heavy; she's my mother." |
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Member |
My Mother, Nancy passed away June 15, 2006 after 8-9 years with Alz. My Dad died in February 2005, no alz. I'm an only child, 38 years old, not married and no children. My mother was the most influential person in my life. She taught me to be independent, made me go to college, drilled into my thick skull to be responsible and made me the person I am. We switched parent-child roles about 4 years ago. I must admit that this was the most difficult time in my life. I loved my mother deeply and to see her turn into soneone else completely broke my heart. I also carried around my cell phone, making sure the battery was fully charged and the ringer was on loud. I dreaded the late night phone calls from the Nursing Home. I'm now trying to move on with my own life and having great difficulty. I'm looking for a counselor to deal with anger management issues. I had friends that saw the care I gave my Mom and how I put my life on hold for her and they asked how I could do it. I responded with "how can I NOT do it?" She gave birth to me, changed my diapers, corrected me when I was wrong, protected me, wiped my snotty nose and made sure I always had what I needed. I felt it was my turn to show her how much I loved her and how much she meant to me. Being an only child, it was most difficult when she finally didn't know who I was. While I was growing up, I was the center of her world. She was always bragging on me, showing off trophies, awards, diplomas, etc... When the ALZ got worse, she didn't even know who I was anymore.
I'm now trying with great difficulty to get on with my life that I put on hold for her. I wouldn't change a thing. I'm glad I had the opportunity to provide the care and love she needed just when she needed me the most. Her mother had ALZ also, so I'm really concerned about my possibilities. When this genetic testing gets more reliable, I'm going to do it... |
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Experienced Member |
Mz.Lisa,
I agree with you. I would help any care giver. Sharing our experiences, what works and what doesn't can help someone else. Feeding the curiosity of those who wouldn't come and visit my dad, those who ran the other way when they realized his thinking was compromised, those who came to his funeral but not to his nursing home room...I share nothing with them. It was a difficult choice whether to write a book which included my journal of dad's illness. The reason it was difficult was I didn't want to share his very personal challenges with THOSE people. I decided they would probably never know the book exists because they have no interest in Alzheimer's disease. They just wanted to know the gossip of his plight. I have relatives who didn't come and see him or even send him a card. When he died they were there, front and center at his funeral. It was their loss. They could have spent some wonderful tender moments with him over the course of his illness but they were not comfortable with that. I'm pretty sure dad wasn't too wild about his situation either. So I agree with Mz. Lisa. I'll share every thing I have with someone who cares about Alzheimer's and nothing with those who abandned him when he needed them the most. |
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Senior Member |
If I had not come to this forum and been priviledged to those with experience I would not have come this far.No matter if something works for one it may work for another.Each has something to share that may help another
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Senior Member |
I would never turn away from someone who needs help & guidance or could benefit from what I've experienced. In Mom's last few months, visitation & the funeral, I shared w/everyone who wanted to know about the disease. The people I came in contact w/ cared about Mom & some were looking at situations w/their parents & wanted more information. It's the people that are just plain nosey & just want "dirt" to gossip about that I avoid. Hope this clears up what I was trying to say earlier. |
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Senior Member |
Being on the other side now, I can attest to this Deborah. This is such a heavy load.... |
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Experienced Member |
Long before my father was diagnosed with Alzheimer's diseae I was a director of an adult daycare. I thought I understood what the care givers were going through. Long before my brother's suicide I had a friend who talked to me quite often about her sister's suicide. I thought I understood. When both rocked my world I was shocked to realize how little I really understood.
What if we truly could feel the pain of every care giver and every tragic thing that can happen? We couldn't make it a week. Doing our best to be there for each other is the best we can do. You have to live it to truly "get it." Blessings. |
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Senior Member |
Mz.Lisa, one phenomenon I have noticed in my friends and acquaintances who have been caregivers for their loved ones is the tendency to get as FAR away from caregiving and the topic of caregiving as they can get when it's over! Not that I blame them - who in their right mind wants to remember and revisit the trials and tribulations of a person's decline and care before their death?!!! Some days, I can hardly WAIT to forget about all this; but it IS important to discuss and remember for the benefit of sharing your hard-earned wisdom with others. I can recall several conversations with former caregivers on the rare occasions I get out into the world... they gave me their sympathy and moved away from me like I was radioactive! Sure, we want to remember our loved ones in their prime, but please don't bury the experience you had as a caregiver: there are people out there who need your input, understanding, comfort, encouragement and wisdom! Sure, sidestep the ones that are nothing but head shaking, tongue clucking, tsk, tsk ain't it a shame - type converstaions because they are meaningless on just about every level. But I hope you will remain open to others walking the walk you have left behind... "She ain't heavy; she's my mother." |
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