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Deb, I see that you have been carrying for your Dad since 2012, so your life has been consumed with his care.
Do you have any siblings, children, cousins, aunts/uncles? If family is too far away, then have your primary doctor recommend a talk therapist. I found one who is close to my age who had also taken care of an aging parent, so when she says "I know what you are going through", she really does :)
My Dad, who was my rock, who had a great sense of humor even up to the day before he passed [which was sudden] I miss that so much.... even though I am very independent and working. It's only been 3 months.
Maybe to fill your time, in your Dad's honor, do some volunteer work. Hospitals are always looking for volunteers, if you don't mind being in hospitals [some people don't, that's ok].... or volunteer somewhere where you have a keen interest. It is such a feel good thing.
You will do fine, just give it time. Maybe look for a support group where you can give advice on what worked for you when you were caring for Dad. Kinda like this forum.
When my kids always ask me "what will I do when you die?" Here is what I say and this goes to you too.
I taught you everything I know, you know what I'd say and do. When you don't know what to do, and need me, just think, and you will know what I would say.
Hi I know what feels my father past away 9 years ago, I cared for him. I have done what I can, physically and financially, if he see your face every day then he is happy, except the inevitable things we cannot change is I GOD hands. Your new commitments To yourself start after your father's Passing on. We all have to face it. Support him till the end. GOD will put Peace in your heart that day when he leaves you. That happen to me. All the best Roda South Africa
I cared for our motherbfor 9 years. Take time for yourself. Volunteer or take a long deserved vacation. Live one day at a time. Its hard but with prayer and faith god will guide you.
You will take what you have learned. You will take the satisfaction that he lived a full life You will take the the lessons he has taught you all throughout his life You will take the joy that caring for him has given you...as well as the heart ache, the aggravation and frustration and you will move on. You will pass on what you have learned. Whenever you talk to someone or see someone in the store that is dealing with the same frustration you dealt with you can offer a kind word, maybe offer a suggestion that worked for you.
It is trite to say.."he is in a better place".."he is at peace"..."he is not suffering anymore"..From experience my husband was in a better place (he was at home)..he was at peace (he had the best care, no frustration)..he did not suffer (he was in no pain) It would have been selfish of me to want him to remain the way he was. He was no longer the vibrant person I met 35 years ago. Even if they came out with a cure for dementia before he died I would not have wanted the cure...unless the damage to his brain could be reversed. So know that you did the best you could and do what he would want you to do and lead a good fulfilling life. And remember to do all the things that you want to do while you can.
Debstl, When my dad first went on hospice, I too became very scared. Dad's still here, but as most of us know, each moment with Alzheimer's is unknown territory, you don't know what you will have one minute to the next. I still go through waves of anxiety when I start thinking about what will happen when he's gone on. In talking with the hospice counselor, I learned what I was experiencing was called anticipatory grief. I did a bunch of research on this which helped me understand what was going on in me and that it was "normal." I pray a lot and I call and meet with the hospice counselor as I need to. Your dad's near the end of this life, do you have or can you get hospice care? They have been invaluable for him and me both.
Alzheimer's is a horrible disease because it leaves the caregiver alone. And since you are a daughter, you have the potential gene to get the disease. Now begins YOUR battle to start doing everything good for your brain's health so you do not succumb to this dreaded disease. I am dealing with the same situation and it is so difficult seeing the decline in my husband of 32 years. All I can do now is help him every day make the most of his time remaining, and keep myself from falling apart - for his sake and mine. My thoughts and prayers are with you and know you are not alone. God be with you and your Dad.
Everyone's travel through grief is different. I think the same goes with anticipatory grief. Your journey will be uniquely yours, but you might find sharing and hearing others' journey through this helpful. Maybe even a grief support group?
I would also like to say that I have prayed for my dad to pass from this life to end his suffering in this horrible disease and have prayed for him to live because I could not stand the thought of him being gone. I have had and have anxiety, grief, guilt at the thought of his passing. I have had guilt over the thoughts I've had through the years of wanting my "own" life back. But I know I've done the best I could at balancing jobs, family and caring for dad and my aunt. It's a hard road that no one asks for but when it's over, traveling this long road with them will be one of the biggest blessings in our lives, at least it was for me with my care of mom through her death.
I looked after my Mum for the last seven years of her life and only took her to the hospital for the last six hours. That was right for us. This anxiety or 'anticipatory grief,' whatever it is mindfulness is the path. I had evolved such a routine with my Mum that I too had become trapped into that routine over that long period of time. We much each find our own way to 'kick' that routine or throw it off - or perhaps evolve out of it. We are not the elders that we loved (of course in the metaphysical we are). We need to recreate our own patterns, for me I longed to be immersed and embraced in nature so I have lived in a tent for the last 10 months (Mum passed just over a year ago). Give yourself the freedom to dream within your means. This living close to the land in nature has given me enough time to write a novel - Shambhala and the Pearl of Great Price. It was a way of addressing the beauty and difficulty that I faced on the journey to love. Yesterday I just wrote the opening to the next novel and I will quote myself ;-) I think it fits: This book is not so that you don’t lose your way but that you can find it again by knowing that all these stories run through you; the heroes, the tricksters and from time to time even the villains. You will need all of them in your story to change the world as it is not easily changed and the good we do has the habit of becoming undone. Don’t ever forget that there is dark and there is light. You must see with the eyes of the heart as dark masquerades as light and sometimes light as dark. There is much trickery and cleverness in this world and you will need second sight. The naive flounder and are preyed upon everywhere, whereas the innocent for a time walk unscathed and the wise know the path between worlds. Your birthright and destiny is to dance in both worlds, in the world of the spirit and this physical world. There is no way to do that without knowing all that runs through your blood, both daemon and angel. Robertson Davis speaks true when he says, ‘What’s Bred in the Bone...’ But that is not all. Transformation is always possible. Just as you know there is good and evil you must believe in the transmutability of evil to good and good to evil otherwise a predestined life is a prison and all stories do is warn of dangers. The arc of the story is our golden gate, our eternal source of hope and encouragement.
I think everyone is different, My father died suddenly, but he was in extreme pain. He even told us he wished he would die. No, we did not want him to go, but we knew he would not suffer any longer. On the other hand, when my mother died, that was hard, but she had taught us how to take care of ourselves. Dying is just a part of life, that is very hard for some people to accept. The day I (literally) carried my mother to my sister SUV and we took her to the hospital, I told my sister, "she will never come home." She was skin and bones. Those were the hardest days, dying was much easier because we knew she wasn't suffering. The 5 days she laid in the hospice were the most horrifying day of our lives. Of course, I cried, but I got over it quickly. I am not a hard man, in fact, I am pretty soft hearted. I am a realist, I know we will all die, that is a fact. Remember the good times. We just went through this with my wife's father, he was 93, suffering from blindness, deaf, and could hardly walk. He to was in pain. He was ready to go. We must accept their wishes, The hardest deaths are the young people who die way before their time. I never want to outlive a daughter or grandchildren. A quote from a famous person once said: "When we die we do not know we have died, the pain is only felt by others"
To answer questions about the dementia patient and their needs we MUST go to the Bible for encouragement. Christ has the answer to all of the needs we may have. Psalms and the book of Acts are good places to meditate and find that even men of old were encouragers. Think for a moment of Saul who became Paul after his salvation - he needed encouragement. "Encouragement may be the greatest gift we give this Christmas."
My mom just died in my arms,3 nights ago...I am scared,and I am confused,but most of all? There is this huge pain in the pit of my being that I never eve knew existed...I am sooo lonely for her...she was my 24/7 companion.Now? nothing//Just silence and brief memories...Im broken in a big way.Nothing makes any sense...
debstl I know it will be very tough, since so many of Us here on Age / Action have lost Those Who We Cared for and loved so very dearly. I cried My Heart out for three months when My Mam passed away from Alzheimer's. I found the void and the emptiness, also the silence un bearable,and the loneliness too. I found great peace in Prayer, and I joined the Legion of Mary in thanks giving to Our Lady for the beautiful peaceful and painless end to Mam's long and beautiful Life. In the earlier months I deliberately avoided People, and I shopped far away from home because I was so broken inside, and I did not wish to meet People I knew, since I would break down. Then one morning I got up out of bed whistling and in great form, hence I realised immediately I had reached the point of acceptance, and that dreadful sadness that hung over Me was gone. Now I'm learning to Live without Mother In My Life, though I know I will cherish Mam's memory in My Heart forever. You too will face Your demons and You will after a time allow joy back into Your Life, and never forget Caring for Your dear Dad was the greatest gift a Daughter could give to Her Father. You will get through this. Blessings to You debstl and Your Dad.
Do you have a dog? Sometimes having one really helps bc you know you're needed and the dog forces you to engage in life and even though it's not a cure all, it does let you have your mind on something else for part of the day. He has to eat, be walked, etc. good luck and sorry for your pain
I lost my mother many years ago but she still feels with me now. Maybe it will help you to know that your dad will always be by your side and in your heart.
I'm in a similar situation where I have built a life around caring for Dad. If you can, it would be worthwhile to put some things in place now that will help you transition to the "after". Friends, hobbies. If you have been living in crisis, it is hard to squeeze the extra stuff in, but if you can, then your life afterward will seem less empty.
Well, my mom died after having severe dementia, in a nursing home. I went to see her every week and she knew who I was, but was unable to communicate well - she would talk, but it was a babble about things from the past. (she didn't know where she was!) So, that was different than horrible time she was still living at home, when I was terrified she would fall down the stairs. She passed very peacefully, and frankly, it was a relief. I was glad for her, to be released from her non-life at the nursing home. But that was my experience, for you, I am sorry you are dreading the future. Best thing I can offer is have all arrangements made, everything in order, if you have someone who will be helping you when she passes on, talk with them for comfort. It helps to have just a little sense of control. Then as in any life passage, your life will change and you must find a new way of living. Perhaps discuss this with a social worker. Good luck, god bless.
My Mom died almost 4 months ago. The last year of her life was a total violent dementia nightmare. I had been her caregiver and Dad's too for 15 years. My therapist told me I had severe caregiver burnout. I, too, have been scared of what's going to happen to me now, because chronologically, "I'm next". This is part of what I said in my eulogy: Mom was my companion, friend, advisor, and a true source of unconditional love. And oh, did she make me laugh!!! She was probably one of the funniest people I knew right up until the day she physically left this earth. Memories of her and what we did together, where we went, the things we laughed about are with me day and night. I miss Mom terribly, and nothing I do seems to ease the pain of losing her from my life. I decided I needed a new perspective. I started thinking about all the things I do and how I do them and how Mom influenced my life and really all of who I am. If I stop and am aware of myself doing things the way Mom did and remember that she was the one who taught me, then I can be open to feeling that Mom is still with me, be grateful, and my heart smiles. Because of Mom’s words of wisdom, life lessons and acts of kindness, I pray that I can be a channel of her love and pass the gifts I was so lovingly given along to other people.
I've been trying to live with thoughts of Mom making my heart smile. There are waves of ups and downs, but I try to get myself back to feeling Mom in my heart. It's not the answer, but it's a good direction.
Thanks to everyone who posted here - there are some very helpful answers!!
You are heading into uncharted waters. Your identity has been defined by your father. Now you need to find a new identity. Be carefull not to latch onto the first father figure you find. Take this time to greive, relax and pray. Whatever you do next make it temporary to give yourself time to adjust.
Hi debstl, I know exactly how you feel. I have entered the later stages with my mom and I often think about that as well. I have come to the conclusion, after living the ALZ journal with mom, that life is to precious to waste. I think by the time this is over, I will be in need of a new career. At my age I'm not sure what that is but during times of quiet I do my research on line and try to dream of the possibilities. Perhaps it's time to have a job that gives me freedom and the financial means to do some traveling. But, I do know that I will find a way to honor my mom by living each day of my life to the fullest. Of course, that scares me just as much, (LOL) but I think it's a good scariness if there is such a thing. Hang in there my friend, you (we) will survive this and go on to do great things with our lives. We deserve it!
I'm sorry for you. It will take some time, but you'll be okay. Take time for yourself as others have mentioned, and have faith in yourself. Your dad would want you to be happy. You'll never be alone, because he will be looking down and looking out for you.
my mother died of dementia...she lasted 7 years before she died. Not sure how ill your dad is from ALZ...but when my mother died...and i adored her...i was soooo happy it was over for her and me! it was terribly sad to see her bedridden for 14 mo in her last stage! her poor body was going thru so many terrible changes...it was killing me to see her like that. by the time she died, i was ready...and so happy god took her to a better place!! she suffered enough! i was very scared before she died too!! everything worked out. my prayers are with you!!! you wll be fine too!!
ghostgirl...you wouldn't feel like that if you didn't love her soooooo much! of course you feel like that...her death is sooooo recent. sleep a lot...and keep busy...these feeling will pass!! lots of prayers coming your way!!!
debstl: #1 Do you have a church home? #2 If not, look into one. #3 Do you have a support network of friends? #4 Join groups that bond together for the common goal of having gone through similar trials. #5 Reengage into the interests you had before your caregiving experience. #6 Periodically go out to lunch or dinner with friends. #7 If biblical, read your bible. #8 Seek out a psychiatrist for short-term needs/anti-anxiety meds.
This is a very frightening time and no matter how hard you try and prepare for it, you are never really ready. I just lost my mother to Alzheimer's a month ago. I am thankful that she is no long lost and in pain, but I miss her dearly. I have found great comfort in reading and studying the bible. There is an amazingl website, that has wonderful bible based articles and free publications to help you understand death and the hope for the future and when you will be with you father again. I highly recomment you look at this sight. Any questions or feelings you have are addressed and the Bible-based answers are so comforting. It has really helped me through this difficult time. My prayers and thoughts are with you.
Being on the other side of what you are feeling now, I know that words alone will not be able to alleviate your fears or anxieties. Your Heavenly Father cares and He wants you to take all of your worries to Him. Life will be different as I am learning that it is ever changing. Looking back, and hindsight is always 20/20, I wish that I would have rested more and trusted more in the One who knows all and holds us closer than our own heartbeat. HUGS to you.
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APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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Do you have any siblings, children, cousins, aunts/uncles? If family is too far away, then have your primary doctor recommend a talk therapist. I found one who is close to my age who had also taken care of an aging parent, so when she says "I know what you are going through", she really does :)
My Dad, who was my rock, who had a great sense of humor even up to the day before he passed [which was sudden] I miss that so much.... even though I am very independent and working. It's only been 3 months.
Maybe to fill your time, in your Dad's honor, do some volunteer work. Hospitals are always looking for volunteers, if you don't mind being in hospitals [some people don't, that's ok].... or volunteer somewhere where you have a keen interest. It is such a feel good thing.
You will do fine, just give it time. Maybe look for a support group where you can give advice on what worked for you when you were caring for Dad. Kinda like this forum.
and this goes to you too.
I taught you everything I know, you know what I'd say and do. When you don't know what to do, and need me, just think, and you will know what I would say.
I have done what I can, physically and financially, if he see your face every day then he is happy, except the inevitable things we cannot change is I GOD hands. Your new commitments
To yourself start after your father's
Passing on. We all have to face it.
Support him till the end. GOD will put
Peace in your heart that day when he leaves you. That happen to me.
All the best Roda South Africa
You will take the satisfaction that he lived a full life
You will take the the lessons he has taught you all throughout his life
You will take the joy that caring for him has given you...as well as the heart ache, the aggravation and frustration and you will move on.
You will pass on what you have learned. Whenever you talk to someone or see someone in the store that is dealing with the same frustration you dealt with you can offer a kind word, maybe offer a suggestion that worked for you.
It is trite to say.."he is in a better place".."he is at peace"..."he is not suffering anymore"..From experience my husband was in a better place (he was at home)..he was at peace (he had the best care, no frustration)..he did not suffer (he was in no pain)
It would have been selfish of me to want him to remain the way he was. He was no longer the vibrant person I met 35 years ago. Even if they came out with a cure for dementia before he died I would not have wanted the cure...unless the damage to his brain could be reversed.
So know that you did the best you could and do what he would want you to do and lead a good fulfilling life. And remember to do all the things that you want to do while you can.
I would also like to say that I have prayed for my dad to pass from this life to end his suffering in this horrible disease and have prayed for him to live because I could not stand the thought of him being gone. I have had and have anxiety, grief, guilt at the thought of his passing. I have had guilt over the thoughts I've had through the years of wanting my "own" life back. But I know I've done the best I could at balancing jobs, family and caring for dad and my aunt. It's a hard road that no one asks for but when it's over, traveling this long road with them will be one of the biggest blessings in our lives, at least it was for me with my care of mom through her death.
This book is not so that you don’t lose your way but that you can find it again by knowing that all these stories run through you; the heroes, the tricksters and from time to time even the villains. You will need all of them in your story to change the world as it is not easily changed and the good we do has the habit of becoming undone.
Don’t ever forget that there is dark and there is light. You must see with the eyes of the heart as dark masquerades as light and sometimes light as dark. There is much trickery and cleverness in this world and you will need second sight. The naive flounder and are preyed upon everywhere, whereas the innocent for a time walk unscathed and the wise know the path between worlds.
Your birthright and destiny is to dance in both worlds, in the world of the spirit and this physical world. There is no way to do that without knowing all that runs through your blood, both daemon and angel. Robertson Davis speaks true when he says, ‘What’s Bred in the Bone...’
But that is not all. Transformation is always possible. Just as you know there is good and evil you must believe in the transmutability of evil to good and good to evil otherwise a predestined life is a prison and all stories do is warn of dangers. The arc of the story is our golden gate, our eternal source of hope and encouragement.
Dying is just a part of life, that is very hard for some people to accept. The day I (literally) carried my mother to my sister SUV and we took her to the hospital, I told my sister, "she will never come home." She was skin and bones. Those were the hardest days, dying was much easier because we knew she wasn't suffering. The 5 days she laid in the hospice were the most horrifying day of our lives. Of course, I cried, but I got over it quickly. I am not a hard man, in fact, I am pretty soft hearted. I am a realist, I know we will all die, that is a fact.
Remember the good times.
We just went through this with my wife's father, he was 93, suffering from blindness, deaf, and could hardly walk. He to was in pain. He was ready to go. We must accept their wishes,
The hardest deaths are the young people who die way before their time. I never want to outlive a daughter or grandchildren. A quote from a famous person once said: "When we die we do not know we have died, the pain is only felt by others"
Carol
https://www.agingcare.com/articles/after-caregiving-is-stress-the-new-normal-163252.htm
In the earlier months I deliberately avoided People, and I shopped far away from home because I was so broken inside, and I did not wish to meet People I knew, since I would break down. Then one morning I got up out of bed whistling and in great form, hence I realised immediately I had reached the point of acceptance, and that dreadful sadness that hung over Me was gone. Now I'm learning to Live without Mother In My Life, though I know I will cherish Mam's memory in My Heart forever. You too will face Your demons and You will after a time allow joy back into Your Life, and never forget Caring for Your dear Dad was the greatest gift a Daughter could give to Her Father. You will get through this. Blessings to You debstl and Your Dad.
This is part of what I said in my eulogy:
Mom was my companion, friend, advisor, and a true source of unconditional love. And oh, did she make me laugh!!! She was probably one of the funniest people I knew right up until the day she physically left this earth.
Memories of her and what we did together, where we went, the things we laughed about are with me day and night. I miss Mom terribly, and nothing I do seems to ease the pain of losing her from my life.
I decided I needed a new perspective.
I started thinking about all the things I do and how I do them and how Mom influenced my life and really all of who I am. If I stop and am aware of myself doing things the way Mom did and remember that she was the one who taught me, then I can be open to feeling that Mom is still with me, be grateful, and my heart smiles. Because of Mom’s words of wisdom, life lessons and acts of kindness, I pray that I can be a channel of her love and pass the gifts I was so lovingly given along to other people.
I've been trying to live with thoughts of Mom making my heart smile. There are waves of ups and downs, but I try to get myself back to feeling Mom in my heart. It's not the answer, but it's a good direction.
Thanks to everyone who posted here - there are some very helpful answers!!
I'm sorry for you. It will take some time, but you'll be okay. Take time for yourself as others have mentioned, and have faith in yourself. Your dad would want you to be happy. You'll never be alone, because he will be looking down and looking out for you.
#1 Do you have a church home?
#2 If not, look into one.
#3 Do you have a support network of friends?
#4 Join groups that bond together for the common goal of having gone through similar trials.
#5 Reengage into the interests you had before your caregiving experience.
#6 Periodically go out to lunch or dinner with friends.
#7 If biblical, read your bible.
#8 Seek out a psychiatrist for short-term needs/anti-anxiety meds.
I'm so sorry about the loss of your mom