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This is a real challenge and I wish I had the answer for us both...this sort of thing IS mourning and the loss is very complex. Don't feel that you need to stop 'cold turkey' right now, grief and sadness is a process.
If you can, see if the social worker at your hospital can arrange for a therapist to talk with you; it can help to have someone not only to talk out sadness with, but who also has methods to help move past it. Especially if that therapist is familiar with Dementia.
Hang in there Barbnott and drop in here to the forum for a visit when you need to!
I am so sorry to hear about your father. It's always hard when someone we love and who loves us in return changes into someone who is not capable of loving us like they used to. You are a very wise person to realize that you are mourning the man that your father used to be.
We all mourn whenever we lose something important to us, whether that is a person, a pet, a job, an object, a positive feeling we have/had towards someone. It is a coping mechanism that God gave us. "Blessed are those who mourn, for they shall be comforted." Matthew 5:4 doesn't apply only to when someone dies. Jesus lamented (mourned) over what was happening to Jerusalem in Matthew 23:37-39 and Luke 13:31-35.
As I said before, you are a very wise person to realize that you are mourning the man that your father used to be. Let God comfort you as you mourn the changes that are occurring in your father. "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles." 2 Corinthians 1:3 "I am your God. I will strengthen you and help you." Isaiah 41:10
Therapist Pauline Boss calls the "ambiguous loss." The person is still present, but also is absent in a real sense. She has some suggestions for this kind of mourning in her helpful book, "Loving Someone Who Has Dementia."
When someone dies suddenly you begin the mourning process at death, often with a profound sense of shock at the brutal amputation of someone you love from your life. When someone has a terminal illness you begin the mourning process before the physical death. As you witness each physical and mental decline, there's a cut pruning them from your life. At first each small cut is profoundly painful. But you begin healing even while the person lives, scar tissue begins to form and sometimes the next cut doesn't seem to hurt as much. But sometimes the next cut reopens every wound and is overwhelming as you mourn all those cuts together.
At some point in my father's dementia journey, I stopped seeing his dementia behavior as my dad. That's not my daddy, that's the dementia. My dad is gone and I refuse to let the shell that remains color my feelings for the man I loved. On that day I think I truly started mourning his "death". When my sister died from cancer, the intense mourning of her passage was very brief, maybe because I had been in mourning for nearly 4 years as she battled the cancer. I would compare where I am now with my father to about 2 years since a sudden death. I expect the pain of his physical death will be like my sister's - intense but brief.
I guess I'm saying that you will continue to mourn the man your father used to be in the same stages of grief as though he had died. But there will also be healing from that grief and as in all grief, time will eventually dim the pain. I find great comfort in my faith.
Here's a link to the description of grief as waves that resonates most with me. https://www.good.is/articles/best-comment-ever
As someone who has just lost a father after a 2 1/2 year decline with Alzheimers.
First of all, don't know if you can stop mourning during the decline stage nor should you not mourn. You are losing someone precious. At the same time, I would say while you are gradually losing him and will mourn during that time, still value the time he really is here. I feel I would give anythgint to have it be a year ago where my dad was still alive, though in mental decline.
I am mourning the loss of my husband who is still alive with middle stage vascular dementia. I really miss him and resent the intrusion of the new husband who totters around and can't hear or process what I am saying.
There is a way to stop mourning? No. There is not. We have to mourn until we stop mourning. It takes its time.
But I can say, here only, that I am sick and tired of it. I want it over. It is so long, and slow, and lingering. The final end will be very sad but not sadder than this. And this is so tiring and confining.
I cannot help but ask sometimes: how much longer? And then I know that is the wrong question. There can be no question. I am not in charge of the universe, life or death.
The attitude that sustains is: Just for today everything is fine. Just for today. Stay in the day. Then I am o.k.
Salisbury, I’m right there with you. My dad has vascular dementia and his decline this year has really changed him like you I want it over both for him and for me. I’ve also mourned the good times we had and that he’s no longer able to come visit at my home, that he’s wheelchair bound and that his personality has become very negative and at times downright mean. This is so unfair to him. So yes, it is a mourning and I think worse than mourning a death because it is dragged out. My mom died of a brain tumor 4 months after diagnosis and I think that was a blessing compared to this. To me dementia is much worse than cancer. It’s a loss of self bit by bit...piece by piece, day by day.
My dad doesn’t have dementia, but is a very different person nevertheless. I try to fondly hang on to the memories of the dad I had, tell my adult children to remember the wonderful grandfather they had before the changes, and to also value the time with him now. Even changed he still has the ability to have us all learn from him. It looks far different, and it’s often hard to watch, but we want to treasure the opportunities anyway as best we can
In my estimation, you never really stop mourning the person you have lost until that loved one has left this earthly life, and then you mourn in a new way that eventually turns into memory. I hope for you that the memories, like my own, are good ones. Even now I soothe myself for brief moments by looking at photos of our life together before this horror began. Sometimes I share the photos with him and he rarely realizes that they are of us and our family, but marvels at them anyway. I recently wrote a poem-"The Long Goodbye", which, we all know this is. It helped me to face the realities of what is, and what is does not diminish the happiness that once was. I feel so badly when I read stories about caregivers who had abusive and/or ugly relationships and have to take care of that person now, but both situations wrench the heart and soul. There are no judgements here. Just keep expressing your feelings and your story.
I don't think mourning ever actually ends. However, it softens as our response to it changes in our own time. Fifteen years ago, I lost my husband, not to death, but to a brain injury. Unlike most dementia his change was a quick change from the man who had been my loving husband for twenty years into the "who the heck are you?" childlike, confused person he is now. It took me ten years to get through the hardest part of the grieving process while still caring for the new him...and another five to recover the best me I can be and allow myself to have a self. Now, I care for him but I no longer see him as the man I married... I now see this man as a friend in need, whom I care for. That transition was a hard one filled with grief, anger, self-pity, false hopes etc.. but the process of going through it has made both of our lives happier on this end. I can love him as he is without expecting him to be who he was. That takes a lot of pressure off of both of us. I guess my advice would be to allow yourself to feel what you feel as long as you need to... there's no timeline on grief.
I don't have much of an answer, but this subject is timely for me. Caring for my wife for 19 years of a very slowly progressing dementia, I have adapted to many losses. Yet the recent confusion about who I am, not knowing that we are married (57 years), thinking that I am a friend that is visiting, and sometimes not knowing my name or who I am, this has hit very hard.
I am especially thankful to TNtechie and Salisbury for their comments that spoke to me. I feel compassion for all who experience years of grief that gets renewed with each new stage of loss.
There are many ways to mourn. My last months of caring for my mother were so intense and so horrible that it took me a very long time to forget them and remember her as she truly was. So now ‘mourning’ is wishing I could see her again.
The end of my first marriage was another type of mourning, with grief for the loss coloured with the anger of being deserted. Doing the right thing and keeping our daughters on good terms with him, kept both those feelings alive for me. Now he is in a quick process of dying from cancer, and I have been visiting him. He has become an old friend from a close relationship. I will mourn him when he dies, and it will be a better sort of mourning this time.
So my answer do your question ‘how' is ‘never’, but it will change. Have courage!
My husband has vascular dementia and I can honestly say...the mourning never stops. He has had respiratory arrest 3 times as a result of pneumonia with sepsis. Twice, he has had Grand Mal seizures when we were driving home from Arizona to central Texas. We were in West Texas on Interstate Hwy 10. Both times we were close to a hospital...which is a miracle since there are few hospitals on that drive and they are about 100 miles apart. The last trip on the 2nd of January, he had a seizure about 10 miles from Junction, TX...on the trip last June, he had a seizure 19 miles from Van Horn, TX.
When he had the seizure in January, he had respiratory arrest. I was driving madly to the hospital exit and shaking him violently with my right hand and screaming "don't die, please don't die! I'm sorry, I'm sorry"...he had already turned purple, so I thought he was gone...shortly before I arrived at the emergency entrance, he made a gurgling noise and took a breath. After arriving at the hospital, while the doctor was working on him in the ER, he again had respiratory arrest. He was intubated and flown to Austin. When he left Junction, he had no reflexes...no responses whatever to any place I touched him. I cried all the way to Austin...about a 3 hour drive...the doctor said he had done all he could and apologized for not being able to get him to breathe...all the nurses and ER personnel expressed their sympathies and said they had tried everything. As I drove to Austin, I was devastated and angry that they didn't just pronounce his death, angry that I'd have to go to Austin to have his breathing tube discontinued, and somewhat relieved that it was over...no more watching him deteriorate.
When I got to Austin, it was rush hour and sleeting; I was exhausted and couldn't find the hospital...GPS wasn't working properly, so I had to call my son in Arizona to guide me to the hospital. I was directed to ICU where my husband, still intubated, was being cared for by the doctor and staff. To my shock, he was breathing on his own, but was sedated...I had already planned his funeral!
Now, here's the point of this long saga. I was relieved that he was still alive, because it is so hard to let go! I have been through the process of grieving for at least 4 years, sometimes wondering when it would be over...then feeling guilty for having that thought! I spent three hours planning his funeral and trying to accept that I did everything I could to take care of him. I felt extremely guilty for telling the doctor that he has a DNR....which does not include intubation for respiratory arrest...and I initially refused the intubation, because I didn't want to have him go through further deterioration...felt very guilty for that.
My husband is still living after 3 grueling weeks in the hospital...pulling out urinary catheter, NG tube, central line, picc line, and dopp-hoff tube. Fighting with an incompetent hospitalist doctor who refused to treat fluid retention and sent him into heart failure and pulmonary hypertension. I am not sorry he survived...obviously, God still has him here for His purpose. I continue to mourn as my husband continues to deteriorate...sometimes not remembering who I am. Some days I feel like I can handle anything and some days I can't get myself to get up and do anything...I just exist. I wish there was an easy answer...there isn't! I try to wake up and thank God for his goodness and mercy and ask him to help me with whatever the day may bring. It does help me to know that God has a plan for both of us, so I try to be patient.
If you are the caregiver...you are not alone! God Bless You!
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
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.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
If you can, see if the social worker at your hospital can arrange for a therapist to talk with you; it can help to have someone not only to talk out sadness with, but who also has methods to help move past it. Especially if that therapist is familiar with Dementia.
Hang in there Barbnott and drop in here to the forum for a visit when you need to!
We all mourn whenever we lose something important to us, whether that is a person, a pet, a job, an object, a positive feeling we have/had towards someone. It is a coping mechanism that God gave us. "Blessed are those who mourn, for they shall be comforted." Matthew 5:4 doesn't apply only to when someone dies. Jesus lamented (mourned) over what was happening to Jerusalem in Matthew 23:37-39 and Luke 13:31-35.
As I said before, you are a very wise person to realize that you are mourning the man that your father used to be. Let God comfort you as you mourn the changes that are occurring in your father.
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles." 2 Corinthians 1:3
"I am your God. I will strengthen you and help you." Isaiah 41:10
At some point in my father's dementia journey, I stopped seeing his dementia behavior as my dad. That's not my daddy, that's the dementia. My dad is gone and I refuse to let the shell that remains color my feelings for the man I loved. On that day I think I truly started mourning his "death". When my sister died from cancer, the intense mourning of her passage was very brief, maybe because I had been in mourning for nearly 4 years as she battled the cancer. I would compare where I am now with my father to about 2 years since a sudden death. I expect the pain of his physical death will be like my sister's - intense but brief.
I guess I'm saying that you will continue to mourn the man your father used to be in the same stages of grief as though he had died. But there will also be healing from that grief and as in all grief, time will eventually dim the pain. I find great comfort in my faith.
Here's a link to the description of grief as waves that resonates most with me. https://www.good.is/articles/best-comment-ever
I'm sorry to learn that your sister lost her battle with cancer. You've certainly had some challenges in your life.
First of all, don't know if you can stop mourning during the decline stage nor should you not mourn. You are losing someone precious. At the same time, I would say while you are gradually losing him and will mourn during that time, still value the time he really is here. I feel I would give anythgint to have it be a year ago where my dad was still alive, though in mental decline.
There is a way to stop mourning? No. There is not. We have to mourn until we stop mourning. It takes its time.
But I can say, here only, that I am sick and tired of it. I want it over. It is so long, and slow, and lingering. The final end will be very sad but not sadder than this. And this is so tiring and confining.
I cannot help but ask sometimes: how much longer? And then I know that is the wrong question. There can be no question. I am not in charge of the universe, life or death.
The attitude that sustains is: Just for today everything is fine. Just for today. Stay in the day. Then I am o.k.
I’ve also mourned the good times we had and that he’s no longer able to come visit at my home, that he’s wheelchair bound and that his personality has become very negative and at times downright mean. This is so unfair to him. So yes, it is a mourning and I think worse than mourning a death because it is dragged out. My mom died of a brain tumor 4 months after diagnosis and I think that was a blessing compared to this. To me dementia is much worse than cancer. It’s a loss of self bit by bit...piece by piece, day by day.
This is just the reverse with our parents.
I am especially thankful to TNtechie and Salisbury for their comments that spoke to me. I feel compassion for all who experience years of grief that gets renewed with each new stage of loss.
The end of my first marriage was another type of mourning, with grief for the loss coloured with the anger of being deserted. Doing the right thing and keeping our daughters on good terms with him, kept both those feelings alive for me. Now he is in a quick process of dying from cancer, and I have been visiting him. He has become an old friend from a close relationship. I will mourn him when he dies, and it will be a better sort of mourning this time.
So my answer do your question ‘how' is ‘never’, but it will change. Have courage!
When he had the seizure in January, he had respiratory arrest. I was driving madly to the hospital exit and shaking him violently with my right hand and screaming "don't die, please don't die! I'm sorry, I'm sorry"...he had already turned purple, so I thought he was gone...shortly before I arrived at the emergency entrance, he made a gurgling noise and took a breath. After arriving at the hospital, while the doctor was working on him in the ER, he again had respiratory arrest. He was intubated and flown to Austin. When he left Junction, he had no reflexes...no responses whatever to any place I touched him. I cried all the way to Austin...about a 3 hour drive...the doctor said he had done all he could and apologized for not being able to get him to breathe...all the nurses and ER personnel expressed their sympathies and said they had tried everything. As I drove to Austin, I was devastated and angry that they didn't just pronounce his death, angry that I'd have to go to Austin to have his breathing tube discontinued, and somewhat relieved that it was over...no more watching him deteriorate.
When I got to Austin, it was rush hour and sleeting; I was exhausted and couldn't find the hospital...GPS wasn't working properly, so I had to call my son in Arizona to guide me to the hospital. I was directed to ICU where my husband, still intubated, was being cared for by the doctor and staff. To my shock, he was breathing on his own, but was sedated...I had already planned his funeral!
Now, here's the point of this long saga. I was relieved that he was still alive, because it is so hard to let go! I have been through the process of grieving for at least 4 years, sometimes wondering when it would be over...then feeling guilty for having that thought! I spent three hours planning his funeral and trying to accept that I did everything I could to take care of him. I felt extremely guilty for telling the doctor that he has a DNR....which does not include intubation for respiratory arrest...and I initially refused the intubation, because I didn't want to have him go through further deterioration...felt very guilty for that.
My husband is still living after 3 grueling weeks in the hospital...pulling out urinary catheter, NG tube, central line, picc line, and dopp-hoff tube. Fighting with an incompetent hospitalist doctor who refused to treat fluid retention and sent him into heart failure and pulmonary hypertension. I am not sorry he survived...obviously, God still has him here for His purpose. I continue to mourn as my husband continues to deteriorate...sometimes not remembering who I am. Some days I feel like I can handle anything and some days I can't get myself to get up and do anything...I just exist. I wish there was an easy answer...there isn't! I try to wake up and thank God for his goodness and mercy and ask him to help me with whatever the day may bring. It does help me to know that God has a plan for both of us, so I try to be patient.
If you are the caregiver...you are not alone! God Bless You!
I’ve just joined this site and have seen several references to your lovely poem. Thank you so much.