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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.
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kphuggs Apr 2021
I should also add, I too lost my mom at a young age so I understand your feelings. I have been struggling with feelings of “being orphaned” which makes this even more challenging :(. I am praying for your strength and healing in this painful journey.
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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))
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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
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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.
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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.
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NYCmama Apr 2021
PatsyN your post moved me. I totally get how you are feeling, the road is long and heart wrenching and I pray you find peace and God's strength and consolation along the way.
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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!
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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 ..
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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.
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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.
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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.
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Raven1723 Mar 2021
Thank you. (Is there any way you could share which nursing home? The place he is now gets solid ratings but I do have some issues - I guess there are always some, right?)

At this point I wouldn't consider moving him. His stepdaughter and other grandkids are there and he's lived in the area all his life so his community (both personal and spiritual) is pretty vast. But I will consider if it needed down the road.

When I cleaned out my dad's apartment (he was renting), I brought a ton of photos back with me. His friends are storing the rest. Anyhow, we've been scanning all of these photos it to put on a display frame in his room. It's been amazing, but difficult to go through them. I lost my mom so young and I'm used to the jolt I get looking at photos of her, but I'm not used to having that same jolt when I look at my dad.
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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.
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Raven1723 Mar 2021
Thank you for this insight. Thankfully dad and I have no unresolved issues. We've always had a very open and honest relationship and, since I am his POA and had to go through the Medicaid process, I'm on top of all the financials.

I feel as though I'm doing what I can for him emotionally and logistically. It's just hard to turn my grief on and off when I'm talking to him and need to present a positive face.

Thank you for your kind words.
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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.
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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
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Raven1723 Mar 2021
Thank you and I've very sorry for your loss as well. Peace is the hope, isn't it? But sometimes it's so elusive.
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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.
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cweissp Mar 2021
Amen to that. Beautifully said.
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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.
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Raven1723 Mar 2021
I am SO sorry for everything you've been through. We adopted our daughter after similar trials and no one was happier for us than my dad.

Yes, he's been vaccinated. Evaluations are currently going on - as much as they can in a pandemic. If he leaves to see a neurologist (next on the list), he has to be in the isolation wing at the SNF for 2 weeks and that is always disorienting for him. They were hoping that coming off some of the meds might help physically as well, but I think it's actually hurting him cognitively. I am trying to get him more therapy, mostly occupational. But it's hard to push for when he can't figure out how to use his phone, you know?

I do treasure every call, I just miss him at the same time.
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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.
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Raven1723 Mar 2021
Thank you <3
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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.
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How did the police have to rescue him from rehab? Sounds like an interesting story.
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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.
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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.
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