In October, my 80 year-old dad was driving, living alone, and working almost full time. A UTI landed him in the hospital where we suspect he caught COVID. A (too) short hospital stay resulted in discharge to a rehab facility that the police had to rescue him from. He entered hospital #3, was placed on a vent for 8 days and was eventually released to a different rehab where it looked like he will probably stay permanently (it has a SNF wing).
He's unable to walk, and has been diagnosed with vascular dementia for lack of anything else. CT scan showed no stroke and taking him out for an MRI would mean 2 weeks of isolation when he returns to the SNF and no one thinks it's worth it. Whatever the diagnosis, we're certain that O2 deprivation is the culprit.
I'm an only child, my mom died when I was a teen and my dad and I are super close. I'm in TN and he's in MI (he has a huge community of friends there so it makes sense he stays where he is).
I realize that many of you are full time caregivers and you have all of my respect. PLEASE know that I understand how much easier I have it than many of you. That being said, I am wresting hard with juggling my day job, daughter's virtual schooling, a side career, and life while staying positive for my dad (we face time at least 3 times a day) AND dealing with the doctors, therapists, and all of the people at the SNF who have helped me deal with electronics and such (to keep dad as connected as possible).
After 5 months of this and jumping through the hoops to get him on Medicaid, I think it's finally hitting me that the dad I saw for an impulsive weekend in August is never going to be back and it's just gutting me.
My husband tells me not to grieve prematurely, that there will be time when that is warranted and I intellectually agree with him. But emotionally....how do you process this sort of grief? My dad's cognition fluctuates. Some days he's reminding me to buy a birthday card to mail to a friend on his behalf, and analyzing baseball stats, then some days he can't remember how to call me or whether he's in his room or not.
Sorry, I feel like I'm whining, but no one IRL gets it and I feel as though I'm just plowing through the days trying not to burst into tears.
In addition, we moved my sister to IL in December, due to numerous falls, and hallucinations and delusions. She has gone rapidly down hill. Now we are having to consider moving her to AL or MC. She insists she doesn’t have dementia and refuses to move or see a dr for assessment. The IL facility is ready to kick her out.
So I have all that to deal with in addition to my husband. Some days I just don’t want to answer the phone or get out of bed ! But I do, because my husband needs me and I need him.
Good luck going forward. The grief is real. Grieving for what is coming and what will never be, and all that is in between. I wish you peace and comfort.
You don't really "get over" grief, but you learn to live with it. Not that it needs to dominate your life. One "grief quote" I have heard is you "put your grief in your pocket and carry it with you."
Your father will probably never be quite who he once was, but he is still your father and you love him and you relate to him each day as that day presents itself. He will thrive or deteriorate on his own schedule, regardless of how much you wish your phone calls or facetime could dictate his condition.
It is good to express your fears and sadness to others who understand. I am glad for your father that he has such a good support system where he lives. If he is safe and generally happy, then he is in good circumstances.
I think though difficult grieving is normal and I just go with it. I feel like I have tears in my eyes all the time. My mom has been with us for five years and this last year has seen a complete deterioration of her in every way. She has been diagnosed with advanced dementia. My life revolves around her. I pray for this to end at this point. She is no longer the strong, independent, creative woman I have known and she has no quality of life at all.
You are living it IRL, and it is painful. Painful and chaotic. It is okay to burst into tears. I will cry with you. When this first cry is over, I will dry my tears, wash my face, and distract myself, my thoughts, and go hug my dH. How about you? [[[[hugs!]]]] 🧸️ There is no such thing as rushing to any perceived 'finish line'.
Elizabeth Kubler Ross wrote the 5 Stages of grief.
A person can be experiencing any stage at any time, and return to a prior stage.
1 - Denial. Denial is a conscious or unconscious refusal to accept facts, information, reality, etc., relating to the situation concerned. ...
2- Anger
3 - Bargaining. Traditionally the bargaining stage for people facing death can involve attempting to bargain with whatever God the person believes in. ...
4 - Depression. ...
5 - Acceptance.
This is not to hurt your feelings.
I am reading:
Jumping through hoops
Wrestling hard
Plowing through
Hiding the need to burst into tears
juggling
dealing
Taking a few short breaks can prevent burnout. You may be on the fast track for early burnout. A few quick breaks, deep breaths, and understanding is far better than burnout.
This is not easy, not less than what anyone is going through. You are going to be okay, and thanks for having the courage to reach out sooner, rather than later. 💞😢💞🆘🥇
Best advice-- enjoy what time you all have left. After he is gone-- do not live in anger or anything negative-- it will come but then acceptance is the eventual grief end product-- it will be rough-- always is because you DO love this human being-- alive or not. Remember all the good things-- send him post cards -- that you can afford to lose. And do try to go visit in person. Hopefully you are already vaccinated. Have a Happy Easter.
I went to a double-up call with one of my favourite co-workers this week; we had the same gentleman four mornings running, which is always nice because you can make some real progress in building confidence. He did so well on the last visit, and he and his wife were very happy, then as we were all chatting together she said sadly: "I wish you'd known him before, he was such a lovely man."
?!?
We looked from her to him, and from him to her, and said in unison: "he IS a lovely man!"
Your father is still your lovely father. And after the rocky road he's just had, five months is comparatively early days. It's not over yet. Don't mourn him while he's still in the room! (((Hugs)))
When mom died after 15 years of battling Alzheimer's--ironically it was her insulin-dependent-diabetes and consequent kidney damage that killed mom (10 years of Stage 3 kidney disease). Still her sugars were the least of her worries because I kept her sugars in excellent control (her A1C averaged 6). Still, in the end mom had to get a feeding tube because she forgot how to swallow completely (it was a last resort but I did not want her dying of dehydration which can take weeks). Yeah it took exceptional hard to work to keep her alive--and comfortable (on hospice for TWO YEARS!) that long with all that diabetes, hypertension (controlled) and high cholesterol (untreatable because of liver disease, and she could not tell me if she had side effects from any statin)..She died age 90, three months and though I read all about "preparatory grief" when it happens, no amount of preparation can possibly relieve the grieving. Not once did mom have to have any kind of psychotropics or narcotics and hospice did great supplying me with diapers, hospital bed, but I did all the work. Still they were there when I needed them.
I know your dad did not die, but it is still the same as having to bring about acceptable. We all die in stages until the eventual death. Once you were a baby..that person is long dead, and you are what you are now totally different due to the forces of CHANGE.
PEOPLE DIE. One day you will die. Keeping that in mind was the only thing that really helped me ACCEPT her death. People get sick, and have catastrophic events like a stroke or whatever that can force them to lose their independence. Those are forces of change. ALl we can do is take care of our health to prevent those things..but once it happens that's that.
The grieving NEVER stops.
The price of love is grief.
So how can you possibly stop loving the person even though they died. Mom died 1-1/2 years ago and I grieve a lot..but I carry on.
All I can say is try to keep up a schedule, follow a routine.
This is his new "normal" -- you cannot change that.
You need FRIENDS to connect with or support groups.
My best friend did much to help me carry on with the business of living after mom died because what other choice did I have? Crack up? It won't change anything. So I'm back to the work force and pursuing my Master's degree. Onward with the business of living. But grief will never go away. It becomes a part of who you are.
I do advise you if you have not already:
(1) Estate planning
(2) Get POA established
(3) Pre-paid funeral or cremation -- trust me when he dies you do not want to go through that because funeral homes will take advantage of you when you are most vulnerable.
(4) No matter what you decide to do, just make sure your loved one is comfortable. That was my guide throughout my mom's life. My mom had a very peaceful death at home, and I took the best care ever so I have no guilt whatsoever. She really was very comfortable all the years I cared for her. I sacrificed my life for her.
I understand....yes, what I believe you are experiencing is what is known as "Anticipatory Grief"....and its a real bugger.
I was my dear, sweet mother's caregiver, we moved her in with us, no regrets on that at all....but, during her last months as she slipped further and further into decline, I slipped more and more into grief.....I became almost paralyzed by the anticipatory grief...realizing that I was losing her....and there was nothing to be done about it.
We had already got her out of the hospital...just brought her home.
But, I'm telling you, anticipatory grief is Grief!
You see the signs, you see their slow decline, and it is a horrible monster to live with, day in and day out.
I suggest, if at all possible, you go be with your father somehow. Just be there...that's what my mother and I did...we just spent what time we could, she in her bed, me sitting on the bed or chair.
No words are necessary...however, it's always good to share our true thoughts and feelings.
I'll hold you in my prayers, dear Raven. May God be with you. Shalom. 💜🕊💜
(I'm curious why the police had to come at the 1st rehab facility. I can imagine a few scenarios.)
Yes, Anticipatory Grief. I was relieved that there was a name, a known label to the deep and growing feelings of sadness waaaay before my Mother died.
See if you can bring up something from the past that he might be able to e
Here is some great info from Whatsyourgrief.com. I edited it a bit to fit in this space.
Things to Remember When Dealing with Anticipatory Grief
1. ACCEPT THAT ANTICIPATORY GRIEF IS NORMAL. You are normal and feeling grief before a death is normal. This is a common phenomenon that has been documented for nearly a century. You are not alone!
2. ACKNOWLEDGE YOUR LOSSES. Allow yourself to acknowledge that, though the person hasn’t died, you are grieving. Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc. Be aware of the many emotions your are coping with.
3. CONNECT WITH OTHERS. Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated. Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief.
4. REMEMBER THAT ANTICIPATORY GRIEF DOES NOT MEAN YOU ARE GIVING UP.
Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc. You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.
5. REFLECT ON THE REMAINING TIME.
Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful.
6. COMMUNICATE. Just like we all grieve differently, anticipatory grief is different for everyone. Keeping the lines of communication open with family members can help everyone better understand one another. If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.
7. TAKE CARE OF YOURSELF. Way easier said than done!! But it is true. Consider yoga, and meditation and other ideas of ways to take care of yourself. Remember the old cliché, you can’t take care of others if you don’t take care of yourself.
8. TAKE ADVANTAGE OF YOUR SUPPORT SYSTEM. Caregiving and anticipatory grief can be a long road. Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!).
9. SAY YES TO COUNSELING If you are feeling overwhelmed with the feelings of anticipatory grief.
(Check PsychologyToday.com for the most thorough lists of therapists.)
10. RELIEF IS NORMAL When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less. It is a normal reaction after a stressful and overwhelming time in your life.
11. DON'T ASSUME. Just because your loss was an anticipated loss, do not assume this will
May the Lord give you strength through all of this. Love to you. Jane