Hello Piluvyoga, My circumstances are different to yours, none the less my heart goes out to you and I do have some understanding/empathy for your position. My own "parents" as you can read in an earlier post where not alcoholic but nor were they able to be there for me. I pretty much parented myself and single handedly raised my younger sibling from 10 days old, though I was only 41/2 years old myself. I cared for my parents at the end of their lives and like you I found & still find 16 years on difficulty with the whole grieving process. There are for me 3 sets of grief, for myself, for the little girl I never got to be, the stealing of my birthright to be a child, for them, that they weren't my Mum & Dad ever and finally for two people who died so sadly removed from all that had been important to them. With Mother this was was compounded by the fact that only 4 people went to her funeral, Myself, my now late partner & 2 of M's neighbours who were their to support me. Sadly even now all these years later I find it hard at times to deal with the anger, pain & resentment not so much about the abuse but the neglect in between. Their total failure to see and rejoice in their intelligent, loving, bright little girl. Their complete inability to care outside of themselves. I'm glad they are gone & out of pain but I wish I could have Mum & Dad to Grieve for not Meriem & Alister. My widowed BIL is an alcoholic & I'm his carer, though thankfully with out side support & help. Mac has been a drinker since he was 14 & now at 63 he's not going to stop. His dementia is entirely related to his drinking which gets me and him far less help, sympathy or empathy here in England than if he had dementia via a different route. His twin is registered Schizophrenic though Mac's never been assessed. It is so very hard watching him disappear bit by bit. He's still in places an intelligent, witty man. We share a love of not only my late sister, but also our fur babies, the countryside, gardening, books ext. But both the bottle & dementia are stealing away not only his memories but any interests in the things he once loved. I grieve for him most days, but to be honest for me too as I lose this link with my sister. I also worry about where I'll be, what I'll do when he is no longer here. Caring for him takes up so much of my life that either the dementia or his death are going to leave me with a horrific form of empty nest syndrome. That sounds terribly selfish I know, but it is my reality and maybe others feel a little like that too. I don't know you, Piluvyoga but truly my thoughts are with you. Be gentle with yourself. You have given both your parents a wonderful gift that neither one deserved ~ Yourself. Bless you dear, for your love and compassion you truly are a special person.
Piluvyoga I'm so sorry you grew up with both parents being alcoholics who were not there for you. Dad is a very lucky man to have you to care for him. Anger is a part of grieving. Somehow I hope you can make peace and forgive mom for yourself. There are support groups such as alanon for those dealing with alcoholics. Maybe seeing a therapist may help you resolve all these emotions you are going through. You cannot change the past but you can change how you deal with these unresolved feelings and move on with some peace. Hugs to you friend
My Mom actually had significant brain damage due to alcholism back in 1983. She continued to drink until I had to put in a nursing home in 2013 and she died in 2015. I wish I could grieve over her loss, but I really didn't have a mother from the time I was in Middle School. I'm now 64, so it was a long time. Also, my Dad was an alcoholic, so he was no help. I guess in a way I've been grieving so long that I'm just glad that she's gone. It's not like they were violent towards me or anything, it's just that they weren't really there for me as I was growing up. That's what makes this so hard. Mom was never what you would call sweet and we never really did anything together so I con't have a lot to miss. Has anyone else gone through this with alcoholic parents? How do you lose the resentment and grieve instead of being grateful that it's over, at least for Mom. I'm still caring for Dad, who has dementia.
Alzheimer's is such an individual illness, my husband did not lose all his memory but was not the husband I had most of my life. When he died my memory of him was taken away by the Alzheimer's husband. They were like two different people, but the Alzheimer's causes such a drastic change I forgot the real husband.
Wamnanealz give yourself time to adjust to placement. That brings on a new life of its own and more grief, but in time you will both adjust. I don't think for any of us the grieving process will ever be over, not even after their death. Dealing with dementia changes you for life. We will move on but never be the same. The Journey Continues within us..as Valencom quoted we will be free of this in the next life.
What a beautifully written & informative piece. I care for a BIL with dementia so have some understanding. I do not myself have dementia but I am severely disabled with progressive illnesses and I'd like to share just a little in the hope that it may help others. I live 24/7 in excruciating pain. There is no further medication I can take, for the last 5 years I've been on a level of medication given to terminally ill cancer patients in their final days/hours. We keep trying new drugs, new combinations. Holistic treatments ect but so far to no avail. Bit by bit I'm losing every ounce of my independance as my deterioration means that I can not do things for myself. On a bad day that means dressing, cleaning myself after toileting, getting caught short and not making the toilet. I can't go out alone, open/close my purse (I think this is wallet in US), reach for things in shops without help. I no longer cook, used to love it and food is a chore anyway. Given a choice I wouldn't eat. I don't get hungry and my digestive processes cause pain. Food is simply a way to stop my body seeking protein by attacking what muscle I still have. It is soul destroying to have an active mind and a body that won't/can't cooperate. Sometimes I shake and my words slur, despite my wheelchair people assume I'm drunk. At other times people walk into my chair it seems I'm invisible. The bonus to this is I rarely get asked to donate to charity or take part in street activities. I used to tell my late partner "if I lose my marbles, put me down I don't want to live like that." What blissful ignorance, how little I knew. Every now and then I get a respite break, for a few hours, a day or so "I lose my marbles". Truly utter bliss. I potter in my own mind, having crazy conversations with people (though I don't know they're crazy at the time. I'm free from anxiety, guilt or responsibility. The problem comes when I find my "marbles" and know what happened. Then I'm bitterly unhappy and angry at what happened. I can't accept the contentment of that time. Little by little my life is being nibbled away. I refer to my condition as a form of leprosy, slowly, silently devouring me from the inside out. I still for the most part look like "me" to the outside world. But inside there's less of "me" every day. Like a tree that looks great until you get up close and see it's hollow inside, just a thin shell and deep roots keeping it up. I pray for a really fierce storm to uproot that tree and bring that final blessed oblivion. I grieve for the me that was, for what I'm losing. My joy comes in that my beloved died before he could see this happening to me. But, I want to rant and rail at the injustice of this, my life. A life that saps me and stops me doing things. Yet a life that keeps me here, alive not joining my love. I want to weep and wail and rent my clothes (oh, for the strength to do that :~) I do cry. I do pity party for awhile and then I remember how a lifetime ago, I went to a holocaust centre as part of my degree. I read there a poem about not speaking up for others, and in the end there was no one left to speak up for the writer. I vowed there & then to speak up for all I could. As a child I was severely abused on every level, hence some of my physical disabilities and the fact I live with DI/MPD. I've done that, I've spoken up and tried to raise awareness of child abuse, incest, mental health issues, disability. I hope with this I can speak up a little for and give a little insight into those with dementia. I know from sharing my feelings with some folk with early onset dementia at the start of their journeys that much of what I feel mirrors their feelings.
I wanted to say "I'm sorry for your loss", but those words don't fit even after a loved one has passed. Alzheimer's is very difficult. With my aunt she didn't recognize her kids or husband, but by some quirk she remembered her brother-in-law so much of the visiting duties fell to him.
My situation is different although just as heart rending. In ways, I have been grieving since I was old enough to understand my mother's health. My Mom has always been sick with pneumonia. Add to that a family history of depression and smoking beginning at age 13 (when it was cool). She now is in the stage of COPD when we know she will pass soon but soon could be tomorrow, a month, a year, multiple years. She's almost completely deaf. I live 700 miles away and she can't hear me on the phone.
My parents had retired to FL (from CT) and about 5 or 6 years ago, my mother started getting more and more sick. I live in NC so my parents moved up to live near me. There was a summer about 3 years ago when she was so sick that I requested a estimate from the funeral home to plan out how to pay for the funeral. She made it through that summer and then nagged my father to move back to CT so "she could see her grandchildren and great grand children." Now, I have two kids who have seen very little of their grandparents growing up because we moved away for my husband's job. But I lived less than 2 hours away for quite a while and we saw my parents often. In addition, my sister lived across street from my parents. Made her life easier because she pushed a lot of the child rearing onto my parents.
Anyway, so mow my mother is in a nursing home because my father would not longer care for her. She needs 24 hours nursing care, is too frail to walk to the bathroom and can't take care of her own daily needs like washing her hair.
There is absolutely nothing that can be done to fix her lungs and it's only a matter of keeping her comfortable. My father went into the hospital for what was to be an overnight stay on May 1st. He's now in a short term rehab facility attempt to build up his strength and learn to walk. At this point, with 26 more days left on the insurance (after 100 days Medicare stops paying for an SNF), he can't even get into a car seat.
Unfortunately, my parents are in separate facilities and bringing my Mom to visit my Dad is a torturous affair.
For my Mom, the hospital seems to have a revolving door. You know you spend a lot of time there when the doctors and the nurses knowing you by name. As a matter of fact, the last trip to the hospital she was sent from the nursing home with no paperwork. Even the intake nurse didn't need any info, she just pulled up her record and they admitted her.
The was the point at which I found out that the nursing home was ignoring my mother's living will and every time she went to the hospital, the nursing home was making her choose what measures she wanted in case she "died". CPR or no CPR. Intubation or no Intubation. Go to the hospital or not.
They explained to my mother that if they did "CPR, they might break a rib or two but she'd still be alive." Except, that isn't true with COPD patients. If her heart stops, it will be because it was not receiving enough oxygen. CPR would only restart it temporarily. If her lungs give out the only option is to be put on a ventilator. COPD never come off the ventilator, so she would spend the rest of her unnaturally extended life in a bed tied to a machine while be fully aware.
So needless to say, I had a huge temper tantrum. In the hospital, the doctor felt she didn't understand what she was being asked when I asked them to talk to her about her code status. So since my Dad is not able to be her healthcare proxy, the decision came to me. I had to tell them I wanted her status to be changed to DNR/DNI which means if her heart stops don't try to restart it and if her lungs stop working don't use anything that would breath for her.
It's an awful decision for a child (even at 52) to have to make that decision, even though I know that was the intent of her living will. I continue to have to make that decision and reiterate it with the nursing home. Right now, she has pneumonia and I'm having to fight them to get proper treatment for her in the nursing home. They would rather send her to the hospital. It gives the staff a break with one less patient to care (and I use the word lightly) for and if she dies they don't have to do any paperwork. It means they have to do things like take x-rays and blood draws for testing. More work and we wouldn't want to overburden the nurses. They might have to get up off their butts and do some actual work. Sorry.
So, my situation is that everyday I have to deal with grieving for someone who is not dead but is so sick you know she could die anytime. You feel guilty because you know the best thing for her would for her not to wake one morning. You feel guilty because you are having to fight with everyone to ensure they don't use heroic measures and therefore artificially extend her life. You have people who look down on you because they think choosing DNR/DNI means you're just too lazy or busy to deal with an elderly family member. You get tired of having to explain to people who don't get it that it's all about quality of life rather how long you live.
I had to put my Mom in a Nursing Home this past June after she had been living in her own home for decades. She just had her 97th birthday last Sunday. It is clear that she struggles to communicate and cannot except for a word now and then. She is so frail and cannot do anything for herself. It seems like torture and she often reaches her hands out to me like begging for me to take her. When she first arrived at the Home she constantly asked to go back to her house because she does not want to be there. This is so difficult to watch although I believe God will give me the strength to continue this journey for my mom.
I totally understand your feelings. My Mom was so amazing, independent, very talented, so stylish and had a wonderful sense of humor. She lived with us and helped me raise our two sons. When it became apparent she was slipping into dementia at 89 or so, she became angry all the time, not herself at all, and thought we tried to keep her home it eventually became un-manageable. Placing her in a facility was the hardest thing I ever had to do, she was still walking, talking, and sometimes seemed perfectly fine, until night would fall... we watched her gradually lose her cognitive ability, toileting functions, confined to a wheelchair, wouldn't eat or drink. It's a long, slow, awful death... she passed away this August 8th, and I was actually relieved for her sake, she deserved so much better and to die with her dignity intact. She did hug me at the end, and squeezed my hand, tried to smile at all of her loved ones, she knew she was about to be freed...the nigth after her funeral, she sent me a shooting star, and again that weekend... teling me she's fine and better off where she is... Your Mom deserves peace, as do you.
I totally agree with this. I have been through all and am now in the acceptance phase. I have decided to put him in a home after 10 years of h*ll. Actually only the last 5 have been h*ll. Before that we were coasting along together, still able to communicate and deal with the daily problems. Now there is no dealing. It just is what it is! There is no relief from the constant daily little bits of grief every day! I want it to be over for him. It is too hard to witness his daily loss of activities. He has nothing left to enjoy! Just living from moment to moment, doing what he has to do with no knowledge of what that is. He doesn't even know when he has gone to the bathroom. His face is a blank all the time. This man I loved so passionately is gone from me. And yet he is there, needing me and not knowing who I am. It is grief for sure on both our parts. When will it be over?
Life is a journey to the next life. After a life well-lived doing the will of God -- such as lovingly caring for a frail parent, though difficult and wrenching--you can look forward to being with your mom again, and forever, with no more sickness or death.
13 Comments
First Oldest
First
The Ambiguity of Grief
My own "parents" as you can read in an earlier post where not alcoholic but nor were they able to be there for me. I pretty much parented myself and single handedly raised my younger sibling from 10 days old, though I was only 41/2 years old myself.
I cared for my parents at the end of their lives and like you I found & still find 16 years on difficulty with the whole grieving process.
There are for me 3 sets of grief, for myself, for the little girl I never got to be, the stealing of my birthright to be a child, for them, that they weren't my Mum & Dad ever and finally for two people who died so sadly removed from all that had been important to them. With Mother this was was compounded by the fact that only 4 people went to her funeral, Myself, my now late partner & 2 of M's neighbours who were their to support me.
Sadly even now all these years later I find it hard at times to deal with the anger, pain & resentment not so much about the abuse but the neglect in between. Their total failure to see and rejoice in their intelligent, loving, bright little girl. Their complete inability to care outside of themselves. I'm glad they are gone & out of pain but I wish I could have Mum & Dad to Grieve for not Meriem & Alister.
My widowed BIL is an alcoholic & I'm his carer, though thankfully with out side support & help. Mac has been a drinker since he was 14 & now at 63 he's not going to stop. His dementia is entirely related to his drinking which gets me and him far less help, sympathy or empathy here in England than if he had dementia via a different route. His twin is registered Schizophrenic though Mac's never been assessed.
It is so very hard watching him disappear bit by bit. He's still in places an intelligent, witty man. We share a love of not only my late sister, but also our fur babies, the countryside, gardening, books ext. But both the bottle & dementia are stealing away not only his memories but any interests in the things he once loved. I grieve for him most days, but to be honest for me too as I lose this link with my sister. I also worry about where I'll be, what I'll do when he is no longer here. Caring for him takes up so much of my life that either the dementia or his death are going to leave me with a horrific form of empty nest syndrome. That sounds terribly selfish I know, but it is my reality and maybe others feel a little like that too.
I don't know you, Piluvyoga but truly my thoughts are with you. Be gentle with yourself. You have given both your parents a wonderful gift that neither one deserved ~ Yourself. Bless you dear, for your love and compassion you truly are a special person.
I do not myself have dementia but I am severely disabled with progressive illnesses and I'd like to share just a little in the hope that it may help others.
I live 24/7 in excruciating pain. There is no further medication I can take, for the last 5 years I've been on a level of medication given to terminally ill cancer patients in their final days/hours. We keep trying new drugs, new combinations. Holistic treatments ect but so far to no avail.
Bit by bit I'm losing every ounce of my independance as my deterioration means that I can not do things for myself.
On a bad day that means dressing, cleaning myself after toileting, getting caught short and not making the toilet.
I can't go out alone, open/close my purse (I think this is wallet in US), reach for things in shops without help.
I no longer cook, used to love it and food is a chore anyway. Given a choice I wouldn't eat. I don't get hungry and my digestive processes cause pain. Food is simply a way to stop my body seeking protein by attacking what muscle I still have.
It is soul destroying to have an active mind and a body that won't/can't cooperate.
Sometimes I shake and my words slur, despite my wheelchair people assume I'm drunk. At other times people walk into my chair it seems I'm invisible. The bonus to this is I rarely get asked to donate to charity or take part in street activities.
I used to tell my late partner "if I lose my marbles, put me down I don't want to live like that." What blissful ignorance, how little I knew.
Every now and then I get a respite break, for a few hours, a day or so "I lose my marbles". Truly utter bliss.
I potter in my own mind, having crazy conversations with people (though I don't know they're crazy at the time. I'm free from anxiety, guilt or responsibility.
The problem comes when I find my "marbles" and know what happened.
Then I'm bitterly unhappy and angry at what happened. I can't accept the contentment of that time.
Little by little my life is being nibbled away. I refer to my condition as a form of leprosy, slowly, silently devouring me from the inside out.
I still for the most part look like "me" to the outside world. But inside there's less of "me" every day.
Like a tree that looks great until you get up close and see it's hollow inside, just a thin shell and deep roots keeping it up.
I pray for a really fierce storm to uproot that tree and bring that final blessed oblivion.
I grieve for the me that was, for what I'm losing. My joy comes in that my beloved died before he could see this happening to me.
But, I want to rant and rail at the injustice of this, my life. A life that saps me and stops me doing things. Yet a life that keeps me here, alive not joining my love.
I want to weep and wail and rent my clothes (oh, for the strength to do that :~)
I do cry. I do pity party for awhile and then I remember how a lifetime ago, I went to a holocaust centre as part of my degree. I read there a poem about not speaking up for others, and in the end there was no one left to speak up for the writer. I vowed there & then to speak up for all I could. As a child I was severely abused on every level, hence some of my physical disabilities and the fact I live with DI/MPD. I've done that, I've spoken up and tried to raise awareness of child abuse, incest, mental health issues, disability.
I hope with this I can speak up a little for and give a little insight into those with dementia. I know from sharing my feelings with some folk with early onset dementia at the start of their journeys that much of what I feel mirrors their feelings.
My situation is different although just as heart rending. In ways, I have been grieving since I was old enough to understand my mother's health. My Mom has always been sick with pneumonia. Add to that a family history of depression and smoking beginning at age 13 (when it was cool). She now is in the stage of COPD when we know she will pass soon but soon could be tomorrow, a month, a year, multiple years. She's almost completely deaf. I live 700 miles away and she can't hear me on the phone.
My parents had retired to FL (from CT) and about 5 or 6 years ago, my mother started getting more and more sick. I live in NC so my parents moved up to live near me. There was a summer about 3 years ago when she was so sick that I requested a estimate from the funeral home to plan out how to pay for the funeral. She made it through that summer and then nagged my father to move back to CT so "she could see her grandchildren and great grand children." Now, I have two kids who have seen very little of their grandparents growing up because we moved away for my husband's job. But I lived less than 2 hours away for quite a while and we saw my parents often. In addition, my sister lived across street from my parents. Made her life easier because she pushed a lot of the child rearing onto my parents.
Anyway, so mow my mother is in a nursing home because my father would not longer care for her. She needs 24 hours nursing care, is too frail to walk to the bathroom and can't take care of her own daily needs like washing her hair.
There is absolutely nothing that can be done to fix her lungs and it's only a matter of keeping her comfortable. My father went into the hospital for what was to be an overnight stay on May 1st. He's now in a short term rehab facility attempt to build up his strength and learn to walk. At this point, with 26 more days left on the insurance (after 100 days Medicare stops paying for an SNF), he can't even get into a car seat.
Unfortunately, my parents are in separate facilities and bringing my Mom to visit my Dad is a torturous affair.
For my Mom, the hospital seems to have a revolving door. You know you spend a lot of time there when the doctors and the nurses knowing you by name. As a matter of fact, the last trip to the hospital she was sent from the nursing home with no paperwork. Even the intake nurse didn't need any info, she just pulled up her record and they admitted her.
The was the point at which I found out that the nursing home was ignoring my mother's living will and every time she went to the hospital, the nursing home was making her choose what measures she wanted in case she "died". CPR or no CPR. Intubation or no Intubation. Go to the hospital or not.
They explained to my mother that if they did "CPR, they might break a rib or two but she'd still be alive." Except, that isn't true with COPD patients. If her heart stops, it will be because it was not receiving enough oxygen. CPR would only restart it temporarily. If her lungs give out the only option is to be put on a ventilator. COPD never come off the ventilator, so she would spend the rest of her unnaturally extended life in a bed tied to a machine while be fully aware.
So needless to say, I had a huge temper tantrum. In the hospital, the doctor felt she didn't understand what she was being asked when I asked them to talk to her about her code status. So since my Dad is not able to be her healthcare proxy, the decision came to me. I had to tell them I wanted her status to be changed to DNR/DNI which means if her heart stops don't try to restart it and if her lungs stop working don't use anything that would breath for her.
It's an awful decision for a child (even at 52) to have to make that decision, even though I know that was the intent of her living will. I continue to have to make that decision and reiterate it with the nursing home. Right now, she has pneumonia and I'm having to fight them to get proper treatment for her in the nursing home. They would rather send her to the hospital. It gives the staff a break with one less patient to care (and I use the word lightly) for and if she dies they don't have to do any paperwork. It means they have to do things like take x-rays and blood draws for testing. More work and we wouldn't want to overburden the nurses. They might have to get up off their butts and do some actual work. Sorry.
So, my situation is that everyday I have to deal with grieving for someone who is not dead but is so sick you know she could die anytime. You feel guilty because you know the best thing for her would for her not to wake one morning. You feel guilty because you are having to fight with everyone to ensure they don't use heroic measures and therefore artificially extend her life. You have people who look down on you because they think choosing DNR/DNI means you're just too lazy or busy to deal with an elderly family member. You get tired of having to explain to people who don't get it that it's all about quality of life rather how long you live.