Just...Grieving. How do you process this kind of grief?

I will tell you the truth that when my brother, suffering from both a diagnosis of probable early Lewy's Dementia and from an accident that precipitated that diagnosis, as well as finally sepsis, when he did finally go I was relieved. For him especially, and I will be honest to say for me as well. He was frightened of what his diagnosis would mean. I was as well. We had to sell his final small home, he had to move to ALF and asked me to be Trustee of his Trust and his POA which was all unknown territory for me. We lived at either end of our state and flying back and forth was difficult until Covid made it impossible.
If your father and you shared so much love (as did my bro and I) it is my feeling that you will feel relief after now accepting the fact that there is nothing but loss and unknown ahead for him, and for you to suffer seeing his torment.
I sure do wish you the luck. This is likely the right time to mourn. And when your Dad finds peace after suffering it is likely the time to let go, carry him with you while you have life, and know how lucky you are to have had him.
I sure do wish you luck and am so sorry this happened to you both.

This is what is called "anticipatory grief". You can Google it. It's a real thing.

The day my mom arrived in sub-acute rehab and they got her up for PT (or tried to) and she passed out with a moan? The nurse assisting the code team took me to her office and told me to stay until they got me. I realized that there was a real chance that my mom wasn't going to make it out of this situation alive. I cried hysterically for about ten minutes and rhen I made a list of all the folks I would need to contact when/if she died.

I remember the time in Bed Bath and Beyond when my mother argued with me about "anti- itch" cream. She wanted to buy a product with no cortisone, when I knew that was the active ingredient she wanted. "But it SAYS anti-itch cream" she kept saying. I realized her brain was fried and I cried all the way home.

I disagree, respectfully, with your husband. It is healthy and proper to grieve the fact that the knowledgable, healthy parent who raised you and taught you is no longer. It's a long goodbye and frankly, by the time my mom died, it was a relief to us all that she was no longer suffering.

Please be gentle with yourself and find a support group, a therapist, a friend who understands this journey you are on.

How did the police have to rescue him from rehab? Sounds like an interesting story.

Dear Raven,

It is normal and natural to have these feelings and worries for your beloved dad. It is a shock when we see our strong parents face a health crisis. After my dad's stroke, I had hoped that my father would "get better" and return to his normal life.

It's so important to have support during this difficult time. There is already so much on your shoulders and living far away is another stress on you. Please know it's okay to express your feelings and thoughts.

Thinking of you.

Yes, what you are experiencing, like BarbBrooklyn said, is anticipatory grief. You are grieving the father you once knew, and who will never be the same again. And as he declines more, you will grieve more. It's hard, I know. I experienced anticipatory grief for years as I watched my darling husband decline slowly at first and then more rapidly towards the end. It's heart wrenching to say the least. Just know that grieving is healthy, and shouldn't be stuffed down and not dealt with. That will only make things worse. So grieve for the father you love, and know that there are folks out there, that know exactly what you're going through. God bless you.

Who says “how much easier” any of us have it? Most certainly not I.

Even we ourselves have no formed idea of how much we’ll miss someone or how important they are to us until the changes start to happen.

I think it’s amazing and beautiful that you’ve been able to keep him near you on face time, and that he’s been remembering SOME things, and that after all he’s been through, he’s “still there” if only part of the time.

You KNOW that the very last thing in the world he’d want for you to do is sink to despair. There’s still awareness, still joy for him from hearing about his daughter and son in law and grand daughter, still the baseball season coming up, still recovery, a lot or a little from a vicious dis east hat even the experts don’t know everything about.

My story? I had a very difficult fertility history, and finally FINALLY became pregnant, after many losses, at 38. My father, a very young 73, was OVER THE MOON!

I had a difficult delivery, but a beautiful son. Dad was at the hospital every day, and cut the baby’s ID bracelet off when we came home.

Nineteen days later, I was wakened from a nap by my husband, telling me that Dad had had a spell, and we had to go right away.

He was gone before I got there. He’d decided to plant his asparagus after lunch, and a relative had found him in his garden. It took me years to recover.......

Your situation now, is not better or worse or easier or harder than mine was. It was different.

I have a TON of guilt about his death, most or maybe all of it unwarranted. But from the moment I learned he was gone, that was unchanging. What YOU are doing now, is a gift to him and a gift for you. Relish it for that.

Has he been vaccinated yet? Have you had enough absolute, irrefutable medical advice to determine that his situation is probably static? Have any therapies been attempted, any signs of some positives among the negatives you already know?

In retrospect I sometimes wonder whether I “whined” enough when my dad died. “What does she have to cry about, she has a beautiful new baby to fill her world”? Or not.

I think you’re doing as well as you can expect of yourself. Please honor yourself with rest and good self care.

You’ve done every good thing for your dad possible, so far. Now cherish what you have with him right in this moment. It will be good for him, and good for you.

Remember this: Tears are God's holy water; they heal us as they flow.
~Rita Schiano

It's okay to cry. It's okay to feel emotionally gutted. It's okay to prematurely grieve for the 'old' father you've lost to this new father he's become.

Just like he has good days & bad days, so will YOU have your good days & bad days. There's no way out of this, either. The only way out is through. When we love someone, we travel the journey to death with them, whether we want to or not. It's a privilege and a curse both at the same time. Because we have to watch them wither away (unless they pass blessedly in their sleep one night, and even then there's the shock of the unexpected to deal with), and it's so hard to do.

I think you process your grief by allowing yourself to feel it. You're hurting b/c you're watching the father you knew your whole life slip away. My father developed a brain tumor sometime in his 80's, most likely, but we were unaware of it. He had difficulty walking, which we attributed to neuropathy, and then had to stop driving. I moved both of my parents out to Colorado to be closer to me (I'm an only child) in 2011 when dad went downhill.

For the next nearly 4 years, I watched him decline on what felt like a daily basis. He went from a vibrant man to a frail and feeble little whisper of his former self. When he finally went onto hospice in 2015, I literally watched him die for 19 days, in a hospital bed in his room at the Assisted Living Facility both he & mom were living in. It was the worst 19 days of my life. I cried daily, but I cried a lot for the years prior to his hospice days as well, knowing his days were limited.

That's love. That's what it looks like and what it costs. We can't stop the death process from happening, but we can Facetime 3x a day to stay in touch, and let our dad's know we love them and cry when we need to. And, if we have faith, we know in our heart's that when their journey does end, it begins at a new level in a better 'place' with a whole new level of well being that did not exist here on earth. That's what I hold onto, along with all the signs I still get from dad in the form of coins and other things I cherish.

Wishing you the best of luck getting through this most difficult time, dear one. Sending you a hug and a prayer for strength.

Raven, I’m sorry for what you and your dad are going through. My mother had a sudden and severe stroke, instantly we lost so much of her. She wasn’t the same person ever again. She died four years later and we lost her again. I was very close to her and all of it rocked my world. I learned that there’s no right way to handle it. You feel what you’re feeling, and muddle through the best you can. Your dad is blessed to have you in his corner and I wish you both peace

There's no timeline for grief -- it happens when it happens. I've lost both of my parents and one of them is still alive, so I wonder what I'll feel when my poor mother finally goes. I often wonder if I have any grief left (I do, though).

Your husband couldn't be more wrong about waiting for the right time to experience grief. Grief comes from loss, and no one would question that you've experienced a significant loss. Just because your dad is still alive doesn't make that any less upsetting.

I'll say this one thing, though -- don't let the fact that your dad has a group of friends in Michigan keep you from moving him closer to you. Yes, he has friends, but YOU are his family, and you'll be the one helping him through this for the rest of his life. The friends will drop off -- they always do, especially if your dad isn't no longer as cognizant as he once was. Don't blame the friends, but their pal is also gone, and they won't be coming around much pretty soon.

We experienced it with my mother when I placed her in a nursing home close to her home and friends. She had about four visitors in seven months, including a guy who didn't even realize she had dementia and published what she told him (about an imagined marriage a mere four months after my dad's death!) in a local newsletter. I was killing myself driving in L.A. traffic 2-3 times a week to visit her and take her to doctor appointments for no good reason. I finally realized I needed to keep a closer eye on her and moved her down near me. It's been much less stressful for everyone, and many of her friends have asked me why I waited so long to move her.

Go ahead and cry, but I advise moving Dad closer to you, because it'll be better for both of you.

Most people associate grief with the emotions following the death of a loved one. However, as already mentioned, grief can set in long before death. Anticipatory grief is a valid emotion and can be just as consuming as grief after death. There is no such thing as grieving prematurely. Grief comes when it comes. This type of grief can set in as soon as a LO is diagnosed with an incurable disease. It can wear down a caregiver not only emotionally, but physically and even spiritually. How many emotions are there? Sadness, anger, frustration, hopelessness, anxiety, guilt, love, depression- a person caring for a LO can go thru many of them especially if their caregiving experience is lengthy. But anticipatory grief can actually be of benefit. What would you like to say to your dad? Are there any issues that need to be resolved? Now is the time. It can prevent any guilt you might feel afterwards that you didn't address unresolved issues.

What can you do? Accept your feelings, they are normal. Don't be afraid to overtly express your feelings but don't do it in anger. Discuss end of life wishes for your dad. Review any financial and health documents your dad might have. Attend a support group. Retain your social contacts. Create pleasant moments with your dad when you are with him... reminisce, talk of mutual memories, have him talk about what he enjoyed most. And by all means, take care of yourself and don't rule out grief counseling.

Some on this forum are going thru anticipatory grief like you are. Some are experiencing after death grief. And some have overcome it after a long journey. You are not alone. Our thoughts are with you.

I went through a similar situation with my parents, last surviving kid, three states away and dealing with dads dementia and the whole menu of elder care problems.

Dad starting developing dementia at about age 80 and he got worse each year. Mom had a host of medical issues but was still with it mentally for the most part. It was horrible to watch as she lost her husband over a period of years.

I would make the long drive every few weeks and do all I could to keep things going but after going through one crisis after another I got then in assisted living.

After mom died I eventually moved dad to Michigan in a good nursing home near me. At this point he kinda knew me sometimes, sometimes not so much. I grieved for my dad in bits and pieces particularly when he and I would go through his picture box of the old days.

Dad died a peaceful death last year. I’m so glad I had time with him living close to me as well as being able to easily deal with all the medical and care issues that arose.

Maybe you can move your dad near you as he declines and his community of friends gets smaller and less available. It sure sounds to me like you’re doing all the right stuff thus far. Your dad is luckily to have you.

Dear Raven, I agree, grief doesn't just come with death, it come with loss. You've lost the dad who once was. As his body hopefully heals, hopefully some of his mind will also heal. But prepare yourself that it might not happen. Probably the hardest thing for you is the physical distance separating you from your father. Don't suppress the grief work through it and cherish the time you have with your father. Hold onto the old memories, but create new ones with the man he is now.

I too am not a full-time caregiver of my mother who will be 89 in April, who thankfully is still fairly healthy and suffering only mild cognitive disfunction. Dad died about 18 months ago at age 91. He had mixed dementia - alzheimer's and vascular. In January of his 91st year he went to hospital with difficulty breathing - thought to be an upper respiratory virus that was going around and that mom had already had. Come to find out he had multiple heart and circulatory problems. He was discharged to rehab then home at which time he said no more rehab, no more nothing. That is when my world went topsy turvy. Dad went on hospice. In March he had to move to SNF as he was too weak and it was killing mom who was primary care giver as opposed to AL. Dad wanted mom not the staff.

My grief was not profound as yours is, dad after all was coming to the end of his life - he was 91 and had been expressing a desire for death to come to him for a couple of years. He died quietly in July and I can't explain, but my grief ended with his death; I suppose because his struggle and suffering came to an end and he was in a better place. Today I got to visit my mother and give her a hug; both of us are fully vaccinated - it was wonderful after more than a year. We also talked about dad and some of his alternate universe life in dementia - some were kinda of funny some not so much.

I wish your father, you and your family luck and peace.

Oh my gosh, I am going through the same thing too.

There is a point where we know that our parents are not going to get better.

My mom was diagnosed with Parkinson’s disease many years ago. She got it later in life so it has progressed slowly. Watching her slowly decline was very hard to see.

Now she is in a hospice house that I know is her last residence. It’s not unexpected but it is still painful to watch a person wither away before our eyes, isn’t it?

My mom is 95 so we have had her in our lives for a very long time.

She is ready to be with my dad in the afterlife. We aren’t sure exactly when that will be. So, I get through by facing each day one step at the time.

I am so very sorry that your dad has been through so much heartache.

Of course, your heart is breaking too.

Wishing you peace as you move forward through this transitional period.

I find transitional periods to be very difficult.

I sought counseling when I needed to work through issues. It truly helps to speak to an objective professional therapist.

Don’t hesitate to see a therapist if needed.

Take care.

I also went through “Anticipatory Grief “...my mom at 83 went from fairly normal into Lewy Body dementia..a shocker..my moms body is here but my mom is gone...I chose counseling to work through the grief...I now can be with her and enjoy who she is now...the new Marie.....I no longer can ask for her advice or expect her to read my moods or even give the love I had needed as her daughter...we were very close..and remain close but in a different way...I learned to expect less...the sadness and yes...anger is gone.....I am so much better emotionally. This grief you feel is a real thing...get help..Pray...God Bless ..

My ex husband is dying and my grown up children are reacting differently. My son is grieving early and is feeling very angry. I recognise it because I react like that when I am grieving. I start early! And although I continue to grieve after they die, it is slightly easier. It will probably hit my daughter later. We are all different.
The thing to remember is that you did have a good, healthy relationship and lovely memories. These will be a comfort over time. Good luck!

Hugs. My dad died from COVID in September. He "went" very quickly; everyone insisted it was "just a cold" (no judgment) and never expected him to test positive. His "just a cold" lasted maybe 3-4 days. He went by ambulance to the hospital and died about 8 hours later. I was in the ER with my mom when I got the news and had to tell her. I've been so busy dealing with her financial things and work and my family and and and (and Dad left things in pretty good shape, but still) that I haven't had a chance to grieve. And still, I completely get what you're saying. I often think my dad "got out easy"...It's my mom I worry about now and it keeps me up nights. She's at home with 24/7 care (stroke 10 years ago, 95 percent fine, but in a wheelchair) and will inevitably end up in long-term care somewhere; every time I pay a bill of hers I get heart palpitations...Again, hugs. We hear you.

1 yr. ago my mom drove to our house for Easter dinner. She got lost & my husband had to find her. That was the day he came out of denial about her mental decline. 2 mo. later she had a stroke & the vascular dementia took off. She’s in A.L. now. At 85, these things can happen quickly.
Im sorry for the loss of who you remember your Dad to be. It’s very difficult. A grief counselor could be a big help to you.

Look, we each grieve at our own rate and in our own time. If you need to grieve now for the person your father has become that is quite OK.

However, if you can do something to lessen the demands being made on you that would be helpful--maybe a tutor for your daughter a few hours a week? less time on your other job? less hours on your main job for a few months? someone to handle the interaction with the doctors? a financial adviser (paid or unpaid). to handle financial forms and decisions? more help from your husband in one of the above suggestions or whatever his own suggestion might be.

Because your dad's situation has changed, you need to accept the reality of a change in your relationship to him. Now, you are supporting him, rather than he supporting you. However, you have to create boundaries. Unfortunately, your dad's health is going to worsen; and that will create further demands. You need to consider carefully how to move ahead in a way that respects him, but also protects your own life and your responsibilities to yourself, your husband and your daughter,

Love and Prayer

Whenever there is a diagnosis that enables us to see that there is an "end" (a doctor verbalizing it is much more "real" than the thought that every day we wake up is another day, minute closer to our own death)
When my Husband was diagnosed with dementia I told him "I am going to lose you" he said in response "I'm right here" I don't think he really got it. Anyway I began grieving. You don't think about it every day but when you look back on the month, year you notice changes, declines that were not there before. You can't go through life in grief mode, it would not be just depressing but exhausting.
Grief is personal. You grieve the way you want. The fact that your dad is ill makes it more real and you are thinking about him more. And it HURTS to think you are going to lose him. Someone that has been an anchor for you. He has helped you develop your strengths. Thank him for that.
With school ending soon I do hope you plan on making a trip to see him.
I also hope that you and he have talked about what his wishes are.

(And because it is me responding I do hope that you have Hospice involved they will help both of you. )
((hugs))

This whole thing hit me hard. It’s as if I wrote it. I experienced this SAME EXACT thing July 2020. One weekend I was talking to my dad normally, the next I am getting a call from the police about his health. My father was also diagnosed with vascular dementia and it has been a rollercoaster.

I think the best thing to do is allow yourself to feel all the feels whenever they overcome you. Sometimes I’m angry, sometimes I’m sad and I allow it to happen. It will never be the same and that sucks. Allow yourself the space and cry, scream, mope. And give yourself grace because you are doing the best you can given the circumstances.

My situation is extremely similar to your so let me know if you’d like someone to connect with and process this. Talking to people who understand what I am going through has helped immensely.

I do a daily meditation on calm.com. Look it up, you can get a free 7 day trial, there are meditations for all kinds of grief, stress and anxiety issues. I also attend a monthly grief group. Seek support from any groups in your area or orbit, they are helpful.

I have to say men do think differently than women. I feel its better for you to cry & go THROUGH the emotions to get on the other side. There may be many times that you see a change in your father & need to say goodbye. Just 1 day at a time & try to focus on the positive🤗

First, whine and complain all you want (though I don't see any whining or complaining from you here) no need to apologize. Second please don’t minimize your feelings or your burden, who’s to say what you are doing, being your fathers full time caregiver from a physical distance isn’t harder than being his full time on site caregiver where you get to see, touch and spend time with him everyday? Everything we talk about and experience here is based on individuals, no two experiences or reactions exactly the same but so much can be similar that we share in hopes that our experiences will help others.

I think you are recognizing what is the hardest part of all of this for all of us, at least it is for me, the loss. I say recognizing because IMHO we all experience this but we don’t always recognize or acknowledge it and grieving loss is very hard when your in the middle of crisis as well as when the person is still alive. Like your husband many of us don’t consider “grief” as being something you experience prior to death even if we can see the loss. Hope that making some sense. I experience the loss of parts of my mom all the time, even while counting my blessings and enjoying the laughter and love I enjoy with her at the same time. My mom, as much as she wants to, is no longer capable of taking care of me when I’m sick but she still worries so while it added on more thing for me to worry about rather than the one less it would have been in the past, I made sure I dropped in via her Echo throughout a recent surgery of mine and took heart in the fact that she was still Mom enough that’s she was worried and making sure I was ok with lots of “I love you”’s.

You are taking care of your dad by knowing it’s best for him even though it might not feel best for you, to leave him in his hometown, by doing all the decision making and coordinating from anther state to care for him and taking care of both of you by communicating with him every day and doing that as close to in person as humanly possible. Your even taking care of him by not dropping your life and managing that juggling act but make no mistake just the function of doing all of this is beyond hard, the emotional toll of watching him slip little by little from the physical and mental rock you have always known impossible for many of us. I admire your strength and self awareness, it takes a special person and probably a special relationship to be able to live in the moment, pain and all not everyone can do this. I like to think the more I let myself sob for the loss when I need to the less regret or second guessing I will have when Mom does leave this earth but I don’t have any illusions that it will be an easier road just a more freeing one perhaps for both of us as I also try to let her journey go where it needs to go and accept it, help her be ok with it, rather than fight it and keep her the way I think I want her to be.

You never grieve
You celebrate

Dear Raven1723,
there is a thing called anticipatory grief. It is a well documented thing and is the mourning process ( with all it's emotions) for mourning a person that is still alive but no longer the person we knew ( my totally non-professionnal attempt to explain it). Google it .
I hope it can help naming things and help you in your grieving process of the dad you knew before.


p.s In french it is called " deuil blanc" ( that would translate to white mourning".

I understand...this has helped me a lot. Sign up for daily grief emails... https://www.reflectingonmemories.com/grief-and-healing/ LOVE AND HEALING

I am so sorry to hear what you and your dad have been going through since October! My otherwise physically healthy mom with dementia was in the hospital with Covid at the end of the year, 2020. After a month in the hospital and a month in rehab, she is now back in her AL facility, now hooked up to O2 full time. The lack of O2 made her dementia worse, and b/c of the dementia, she’d take the O2 cannula out of her nose, not understanding why it was there. I was dealing with doctors, therapies, O2 folks, none of whom communicated with each other, so I, a non medical person had to coordinate everything. It was making me crazy as well for several months. So I get it!

A couple of ideas: the pulmonary doctor advised a nebulizer machine to help open her lungs. This allows her to get more O2 into her lungs, which has also helped the worsening of her dementia to some degree. Another huge thing was getting her into long term hospice, which takes care of Everything! This has allowed me to be my mom’s daughter, not her medical coordinator and social worker. I will always be her advocate, but they have given me a tremendous peace of mind.

I hope for the very best for you and your beloved dad. The suddenness of his decline is very hard. Hospice (which is for the whole family, btw) has helped my mom stabilize, and has taken the care/coordination burden off of me, so that I can be more available for my mom. The social worker, as part of hospice, can also be there for you to help you process through your grief. All the very best to you and your dad!

You are not whining. When a loved one is no longer there cognitively, we feel a great loss. Even though the person is physically there, he or she is not the person we have known all our lives. I went through this as well. I lost my Dad five or so years ago. He was a high functioning individual all his life, and worked as an engineer for NASA during the "rave to space" and then as a nuclear engineer. It is certainly a loss when you then see him not remembering who you are and not able to even dress himself. I lost my mother a year ago, and she also had been a very bright and high functioning, artistic person. Again, in the final year, she did not know who we were or even what period of her life it was. So, yes, you absolutely are justified in feeling grief over the loss. Just try to remember to be there for your Dad. No matter what day he thinks it is, be there for him as if it is really that day and make it the best you can for him. I know that is hard when you are not able to be in the same place as him, but do your best to bring happiness and comfort to him. Look for a book called "Moments of Joy." It helped me.

A good cry is very helpful..those emotions will wear you down are very stressful do cry you will feel much better. My guess is your father is more lucid in the morning. Keep your face time limited to morningtbe both of you will feel less stress and the positive will be given and tsken. Also you will be able to see when his lucid time is almost at an end for the day. Keep your face time to mornings and longer time when you see his mind shutting down don't call again til the next morning. One face time call a day to dad. Other calls to caretakers. This will help your stress and anxiety. Also it will be helpful to him no stress trying to remember who he is talking .the caregivers have been trained they know what to do to relieve his stress..it is hard on people whose memory is failing they know it is happening. And your keeping him with friends and caretakers whom he sees around him And may not remember their names but he will remember their face because he sees them every day is a good thing. If you take him from the familar he will go down hill faster than you can say scat. Gooduck to you and enjoy your morning chats. Been there done that.

wow. yours is the story that will make some of us take a deep breath and be glad for what's on our plates instead of yours. I'm so sorry for what you're going through and covid complicates all these situations. And it is always a massive challenge to be a long distance caregiver. Getting help, and advocate or a geriatric care consultant comes at great cost..When do you next plan to visit? I'd get all the info you can prior and get some plans in place for someone to serve as a surrogate in you absence to relieve some of your burden. I'm sure as caring as you are some of the stress is coming from your not being able to be sure of what's going on and if he is well taken care of. Most cities have a long term care ombudsman and they may be able to guide you. And if you haven't yet, you might want to consult with a certified elder law attorney in his town. They often are a wealth of information and may do a consultation or some of the essential paper work for a flat fee instead of hourly. Take good care...I'm living under the same roof as my elder parents and my wanting to do an A-1 job resulted in a total shock of getting ill and having emergency surgery for an aorta that dissected. Translation: if you think your life is challenging now, just throw a medical crisis of your own, along with the expenses insurance doesn't cover, into the mix and then try to do what you were doing. How has dad adjusted to all t his and his living arrangements? Might he just as easily adjust in your town? I too would be concerned about his missing friends...but since it sounds like he has many and they are close, can they be players in this game and help in any way? Take good care. And btw, look up your local alzheimer's assn. They have support groups and you might be surprised at what a resource the groups and the assn can be.