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I'm not where you are yet but I'm expecting a deep empty hole, when things are said and done.
One other thing I'm not sure if it was mentioned, is the lack of friends during a years long caregiving. We are to busy , too stressed for friends. Actually for me it started with covid, over the years losing friendships due to political reasons or mostly not wanting to give are parent a deadly virus so didn't want to be around people, then I didn't want to be around unvaccinated people. It really started the ball rolling on loneliness. Then just being to busy. And they pass and we are left with more time, more this and that. And we have to re learn how to fill up are life again. But it takes time
Yes, it is normal. If you didn't have those feelings, well then I'd worry. I've just gone through a diary I kept dealing with both parents - but on reading through, it was too painful....shredded it. Same with finding the paper calendar I kept for last few years - how did I manage to get through - every day filled with notes to go here or there or do this or that...every appointment for them. shredded all of it...and feeling relieved in doing so. Take each day one at a time. It will get better. You will have some steps back. You can't compare this to the healing of a broken leg but your end wish is for it to be fixed and able to walk, same as wanting to get your life back to some degree of new normal.
Tmax1969 and a lot of you are so lucky. You still have your partners hanging with you. I'm happy for you. My dementia mother of whom I cared for passed away a month and 2 days. She passed from brain bleeds on January the 18th, 2024. I am now suffering the tremendous loss, the emptiness, and the loneliness, after caring for her for 7 years. I still cry looking at the stuff of her memories like her photos, her legal documents. On top of that her sudden passed away was shocking. She was just vomiting and defecating abnormally at lunch time on the 17th. Then she turned into a coma stage at the hospital that afternoon, and at 4:40 a.m. the 18th she passed away in a hospice facility.
The emptiness and the loneliness have made it so difficult to deal with the last 4 weeks. Halfway into the caretaking journey, my boyfriend of 8 years broke up with me because I refused to put my mom in the nursing home. I made the decision to keep her home knowing she would die early from nursing home mistreatment that I experienced in her last stay 6 years ago. I'm a single child, and my other half siblings don't care about my mom. They are very cold with me too. I'm praying God and ask my mom to help guide me find my ways into my future normal life again.
My condolences to Tmax1969 and everyone who lost loved ones. I have never truly felt the pain of losing someone until now.
Dear Anh, Condolences on the loss of your mom and the restructuring of your life. I think a lot of the folks here don't take into consideration what it's like to be truly alone--no siblings, no s/o, no kids--to focus upon now that the patient you've devoted your entire being to is gone. I am sorry that you are going through this. I hope that you will rejoin the world and find happiness and fulfillment .
It’s perfectly normal. You have spent 10 years totally there for your mom 24/7. It’s like you finally have time to breathe but you don’t quite remember how to do it. It will all come back to you. And it’s not just the caregiving, it’s also the grief. It will sneak up on you when you least expect it. I recently culled a six inch stack of my brother’s paperwork as I’m getting ready to move. I couldn’t figure out why I was holding on to them. He died less than two years ago. Going through them brought back all the events that we went through—from getting social services to paperwork for the funeral home. It connected me to him. I guess I hadn’t been ready until now and certainly didn’t expect the feelings that came over me. Grief is weird. You don’t know what’s going to trigger it. Be kind to yourself and know that you’re healing from a very long journey.
Not at all. You loved her to do that, and you miss the person you knew all of your life. A Mom is special no matter how disabled she may become, and most, thank God, are very special. Even aside from what you were doing, it was the manner in l which you arranged your life for ten years. It was much more time consuming than a job, so give yourself time to rest, grieve, feel relieved and sad. Then, thoughts of what to do next will appear.
My condolences on the loss of your mother. Yes, we do feel lost after their physical presence is no longer with us( it’s one of those changes we’re not readily ready to accept). We grieve in many different ways but, just know you have people that love and care for you. Although you may need some alone time periodically, don’t shut them out. May you find comfort and peace💕
No one will tell you what to expect. Grieving is the same and different for everyone. I felt like l lost my mom three years before she died because of her dementia. It was hard to just see her fading away, mentally and physically. I felt lucky to have the support online and from friends to help me cope with losing my mom. I am an only child so often I felt orphaned. My mom passed away this past July, 2023. Her spirit keeps me going, I keep her in mind and in my heart. Sometimes when it is a starry night, I go outside look up at the heavens and say hi Mom. I know your light is shining down on me. You feel lost for quite some time and one of the hardest things is to learn to let go of grief. No one can tell you when to do that either. May your suffering be brief. If you need a support group seek one out. We are all here to help one another.
Tmax1969: I am so very sorry for the loss of your mother and send deepest condolences. You are to be praised for taking such good care of her for 10 years. Yes, of course you're experiencing these feelings. We are a large group of active and past caregivers. You are sure to find comfort here. Be kind to yourself. Hugs.
Tomorrow it will be one month since my husband, age 99, WWII Purple Heart Veteran died as a result of dementia. He was my love, my life, my all! We reconnected having been former neighbors. Having grieved in the past for lost loves this is the most devastating. All of the previous comments are a comfort to me, and I thank each and every person who posted a comment. Someone said the deeper the love the greater the grief. I don't know if that is true but perhaps it will comfort someone.
I've heard the void described as an "absence of presence". Personally, I have flashbacks throughout the day. There were some pretty traumatic moments during my (shorter) caregiving journey. Flashbacks, deliberating over decisions that I had made, actions that I had taken, and regrets about actions taken at the very end...should'ves, would'ves, and could'ves. However, I've been reassured by many that I did exactly what I should've done and have been recognized by many for the sacrifice, which is helpful. It'll just take time to reposition ourselves and to reconcile our relationship with the loved ones for whom we cared and sacrificed.
I cared for my husband for over 10 years with dementia. When he died, I felt like I had a giant hole in my life. Did I have any purpose in my life now? It took months (with God's help) to climb out of that hole. I'm praying that God will help you get through that "lost" feeling.
My mom will be gone one year next month, also from dementia and 3 months after my mom passed my only sibling my older brother unexpectedly passed. I still have waves of grief and still cry. I did not realize how much I was doing for my mom until I started recently going through a lot of files and paperwork and things that needed to be done for her. I to felt strange, lost and free all at the same time. I also just started being able to go through her photo albums. It is hard taking care of someone with dementia but after they are gone after a while you will start remembering the times before the dementia and you will smile. 🤗 It does get easier but she was your mom and has been there your whole life and now she's not. Take your time and grieve your way, whatever that might look like. I will love and miss my mom and my brother forever. ❤️ My condolences to you.🙏
Your feeling seems normal to me. My wife's dementia was severe, and she was bedbound for the last two years due to her physical ailments. When she died, almost four months ago, I had a numb feeling of desolate silence and emptiness. I wanted to be alone and didn't want to do anything. The most striking feeling was that my wife's needs were no longer part of my life, and that was my purpose for living. I've since spent my time working on the resultant paperwork. I may yet develop a new purpose for my life, but it won't be as important as being the caregiver for the sweetest person I've ever known. Your feeling of being strangely lost seems akin to mine. Best wishes in your recovery.
My condolences that you lost your mother. Grief may take time and require counseling after this life event. You do have family and hopefully their support. When you feel better and move forward, look into volunteering and hobbies you enjoy. Connect with some friends in person and Zoom conferencing. All the best in your new chapter as life goes on.
Please seek out grief counseling. I’ve learned so much as I had counseling. So much of what you are feeling is completely normal AND there is no timeline for your grief. It comes in waves. Also there are physical symptoms that are normal while grieving. I actually had to see my medical doctor because I had heart palpitations which checked out to be part of the physical manifestation of my grieving. Crying spells can come out of nowhere. Smells, songs, everyday things can be a trigger. Everyone grieves differently and don’t let anyone tell you how or what you should and shouldn’t feel. Give yourself grace and be kind to yourself.
Even though my husband died from cancer a short time after his diagnosis, I had a terrible time with grief. I sort of coasted through life for a couple of years. I was showing up for work but business in my sector was pretty bad. Then the pandemic kicked in and my job was outsourced.
I think I made some bad job decisions with the type of work I decided to do post-retirement. I was home and didn't know what to do. I didn't know if I wanted to return to full time work or put in for retirement. Then it was time to sign up for Medicare. Finally, I not only found myself jobless and widowed, but then I was old according to society's standards. I was sort of in a state of limbo. I started feeling like a productive person when I got a case until my client got ill and died. My brother died a week after my client died. This has all been recent losses. So, now I'm trying to navigate this grief again. It seems like I can't get a break. I spent a lot of my time in freeze mode during the pandemic, but I still kept on by continuing with classes. My apartment looks like a time capsule since I really haven't taken the time out to put things back in place. I just do the basics. I was a good housekeeper at one point, but I feel tired.
I think getting motivated and moving forward would be the place to start for me. But what does an old gal like me do, and where do I start? Grief can take a lot out of you. We grieve a lot of things when someone dies. We grieve the years of caretaking and grieve our lives for our losses. With caretaking or just life in general can mean lost finances, failed relationships, lost friends and homes. It can be divorce for some. Caretaking can take a toll on marriages.
Get grief counseling. My husband was on hospice before he passed in June. The hospice team offered grief counseling and I took advantage of that. It has been and is still a tremendous help.
We are 'totally' thrown off - in all ways - mentally, psychologically, emotionally, and physically - when a loved one dies. It is grief / grieving. Grieving is very normal.
Dementia is one way of 'leaving' although when the physical body goes, it is quite another. As my friend said to me "it is so final."
Check this out: https://www.cruse.org.uk/understanding-grief/effects-of-grief/is-this-normal/
And... from another website:
Grief is tied to all sorts of different brain functions, says researcher and author Mary-Frances O'Connor. That can range from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering.
Although the realization is hard to face, clinical psychologist Mary-Frances O'Connor says we shouldn't avoid them or try to hide our feelings.
"Grief is a universal experience, and when we can connect, it is better."
O'Connor, an associate professor of psychology at the University of Arizona, studies what happens in our brains when we experience grief. She says grieving is a form of learning — one that teaches us how to be in the world without someone we love in it. "The background is running all the time for people who are grieving, thinking about new habits and how they interact now."
I give you a hug during this difficult sad time. While you may feel 'lost,' you are in there ... the sadness or 'grief' may present itself in many ways, i.e., when my mom died, I was 'trying' to get on the San Francisco Golden Gate Bridge to Marin ... and three times, I came to the turn and missed it. I put vegetables in a pot in the cabinet instead of in the refrigerator ... found them a week or so later. The mind / brain does things - jars us - in unexpected ways. Be kind to yourself during this time.
It is not only a loss of 10 years, it is losing a mother of your life time. It is a huge loss. My / our hearts are with you.
The other day I almost put the bag of spinach in the cupboard & potato chips in fridge…then caught myself..said to myself..WTH you doing, L ? My mother is 96 and in SNF since April. I go every night to feed her supper, then do her mouth care. I sometimes think about taking her home again.
My condolences on your loss. My dad died 6 years ago and Mom died about 9 months ago so I understand. It has been a strange journey. I agree that it is too soon to make major decisions. I promised my kids that I would hold off for at least a year. I have felt lost, confused and relieved. Sometimes I have felt all of these things at the same time. The worst is being ambushed by feeling bereft. In my case I try to remember to breathe and give myself time. I too have started taking my dog for daily walks. I am also forcing myself to rejoin the world. Like you I have lived a specific and constrained existence for a very long time. Surprisingly, I have experienced fear while rejoining the world outside my door. Ultimately, I really only have three things to say: you are NOT alone, what you are feeling is normal and give yourself time!
Yes this is Normal - you used your Life force and energy to Keep someone alive and your Body , Mind, soul and Psyche need time to Heal - takes about 2 years for the Body to recover and get your energy Back . Find a grief counselor , Join a Community center , Visit a Museum , Take a cooking Class, get a Massage , Find a Hobby . Sorry for the Loss of your Mom . Gardening , collecting art , Cooking healthy - find ways to Nurture your soul and spirit . Join a dating site - Date my Age is a Good one .
So very normal You have been on duty, needed and alert, for 10 years and now suddenly are NOT. There is an emptiness where all your attention (and stress) used to be Even though the caretaking had to be difficult, you are now dealing with the sudden and significant loss of who you were and what you were doing.
Be kind to yourself and give yourself lots of time to rebuild how you want to live your life. Do not rush the process. Put things back into your life little by little. It takes longer than you might expect, but that's OK. The things you build slowly will be more authentic than things you do b/c you think you "should," Rebuilding is a careful process.
Yes that is normal. In my case I took care of my BIL now he is in a nursing home for dementia I took care of him for 15yrs before the nursing home and I feel lost. When you take care of someone that long it has a toll on you before you don't see it but afterwards you do.
The best thing is to get involved with something else. Volunteer to do something. That is what I am doing now I volunteer doing taxes.
My condolences. My Mom passed 1 year ago. My Dad died 5 years prior. I moved both into my home 11 years ago and took care of them until they died. It is incredibly normal to seem a bit lost. Give yourself enough grace to grieve. Do the legal stuff you need to do...Wills, insurances, funeral stuff. BUT, aside from that don't do anything major right away If you get an inheritance or insurance payout...don't make big decision for several months Slowly re-integrate into life. Caregiving is extremely isolating. A couple of things I did was finally getting into a church and Simply taking my dog on her walks in different areas of my town.
Yes, the more invested into care and thinking of someone's needs, the more profound the loss and change for you. You will adjust. Just be certain to acknowledge that she need no longer suffer and you need no longer fear for her and stand witness to her many losses. She will not be gone from you. My mother passed long ago and is still very much with me. Remember to celebrate the fullness of a life lived. My heart goes out to you in your loss.
Thank you for the kind words. I just can't describe it any other way but "strange". My whole life revolved around her for decades and now ..... a void..... trying to fill it has proven just as terrifying.
When we suffer a loss of great importance, we do feel lost. We wind up having to recreate ourselves for the most part, finding new things to occupy our time and more importantly, meaning to life now.
I recommend a good book for you to read, Finding Meaning: The Sixth Stage of Grief, by David Kessler
In 1969, Elisabeth Kübler-Ross first identified the stages of dying in her transformative book On Death and Dying. Decades later, she and David Kessler wrote the classic On Grief and Grieving, introducing the stages of grief with the same transformative pragmatism and compassion. Now, based on hard-earned personal experiences, as well as knowledge and wisdom gained through decades of work with the grieving, Kessler introduces a critical sixth stage: meaning.
Kessler’s insight is both professional and intensely personal. His journey with grief began when, as a child, he witnessed a mass shooting at the same time his mother was dying. For most of his life, Kessler taught physicians, nurses, counselors, police, and first responders about end of life, trauma, and grief, as well as leading talks and retreats for those experiencing grief. Despite his knowledge, his life was upended by the sudden death of his twenty-one-year-old son. How does the grief expert handle such a tragic loss? He knew he had to find a way through this unexpected, devastating loss, a way that would honor his son. That, ultimately, was the sixth stage of grief—meaning. In Finding Meaning, Kessler shares the insights, collective wisdom, and powerful tools that will help those experiencing loss.
“Beautiful, tender, and wise” (Katy Butler, author of The Art of Dying Well), Finding Meaning is “an excellent addition to grief literature that helps pave the way for steps toward healing” (School Library Journal).
Of course it's normal. All of us that cared for someone for any length of time, felt very lost after they died. I know that after my husband died who I cared for for many years that I seemed to wander every day for months wondering what it was that I was supposed to be doing next. Don't worry though, in time you'll figure out your new routine and what your life will now look like. And you will find joy again too. So take this time now to take care of yourself. You deserve it. God bless you.
Thank you, I have been running to care for my mother in one form or another for 50 years. Her terrifying decline the last 10 years had taken over my life completely. It's like I was drowning and then suddenly there was air. It really does feel strange now. Now I look around and everyone else in my family gone as well. I have a great wife and 2 step kids. They are wonderful but I thought, if she divorced me I would be alone on this whole planet. Scared the hell out of me.
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.
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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.
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I'm not where you are yet but I'm expecting a deep empty hole, when things are said and done.
One other thing I'm not sure if it was mentioned, is the lack of friends during a years long caregiving. We are to busy , too stressed for friends. Actually for me it started with covid, over the years losing friendships due to political reasons or mostly not wanting to give are parent a deadly virus so didn't want to be around people, then I didn't want to be around unvaccinated people. It really started the ball rolling on loneliness. Then just being to busy. And they pass and we are left with more time, more this and that. And we have to re learn how to fill up are life again. But it takes time
So sorry for your loss. Your feelings are perfectly normal. Many of us have felt as you do.
The emptiness and the loneliness have made it so difficult to deal with the last 4 weeks. Halfway into the caretaking journey, my boyfriend of 8 years broke up with me because I refused to put my mom in the nursing home. I made the decision to keep her home knowing she would die early from nursing home mistreatment that I experienced in her last stay 6 years ago. I'm a single child, and my other half siblings don't care about my mom. They are very cold with me too. I'm praying God and ask my mom to help guide me find my ways into my future normal life again.
My condolences to Tmax1969 and everyone who lost loved ones. I have never truly felt the pain of losing someone until now.
Yes, we do feel lost after their physical presence is no longer with us( it’s one of those changes we’re not readily ready to accept).
We grieve in many different ways but, just know you have people that love and care for you. Although you may need some alone time periodically, don’t shut them out. May you find comfort and peace💕
Even though my husband died from cancer a short time after his diagnosis, I had a terrible time with grief. I sort of coasted through life for a couple of years. I was showing up for work but business in my sector was pretty bad. Then the pandemic kicked in and my job was outsourced.
I think I made some bad job decisions with the type of work I decided to do post-retirement. I was home and didn't know what to do. I didn't know if I wanted to return to full time work or put in for retirement. Then it was time to sign up for Medicare. Finally, I not only found myself jobless and widowed, but then I was old according to society's standards. I was sort of in a state of limbo. I started feeling like a productive person when I got a case until my client got ill and died. My brother died a week after my client died. This has all been recent losses. So, now I'm trying to navigate this grief again. It seems like I can't get a break. I spent a lot of my time in freeze mode during the pandemic, but I still kept on by continuing with classes. My apartment looks like a time capsule since I really haven't taken the time out to put things back in place. I just do the basics. I was a good housekeeper at one point, but I feel tired.
I think getting motivated and moving forward would be the place to start for me. But what does an old gal like me do, and where do I start? Grief can take a lot out of you. We grieve a lot of things when someone dies. We grieve the years of caretaking and grieve our lives for our losses. With caretaking or just life in general can mean lost finances, failed relationships, lost friends and homes. It can be divorce for some. Caretaking can take a toll on marriages.
Dementia is one way of 'leaving' although when the physical body goes, it is quite another. As my friend said to me "it is so final."
Check this out:
https://www.cruse.org.uk/understanding-grief/effects-of-grief/is-this-normal/
And... from another website:
Grief is tied to all sorts of different brain functions, says researcher and author Mary-Frances O'Connor. That can range from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering.
Although the realization is hard to face, clinical psychologist Mary-Frances O'Connor says we shouldn't avoid them or try to hide our feelings.
"Grief is a universal experience, and when we can connect, it is better."
O'Connor, an associate professor of psychology at the University of Arizona, studies what happens in our brains when we experience grief. She says grieving is a form of learning — one that teaches us how to be in the world without someone we love in it. "The background is running all the time for people who are grieving, thinking about new habits and how they interact now."
I give you a hug during this difficult sad time.
While you may feel 'lost,' you are in there ... the sadness or 'grief' may present itself in many ways, i.e., when my mom died, I was 'trying' to get on the San Francisco Golden Gate Bridge to Marin ... and three times, I came to the turn and missed it. I put vegetables in a pot in the cabinet instead of in the refrigerator ... found them a week or so later. The mind / brain does things - jars us - in unexpected ways. Be kind to yourself during this time.
It is not only a loss of 10 years, it is losing a mother of your life time.
It is a huge loss. My / our hearts are with you.
Gena/Touch Matters
My dad died 6 years ago and Mom died about 9 months ago so I understand. It has been a strange journey. I agree that it is too soon to make major decisions. I promised my kids that I would hold off for at least a year.
I have felt lost, confused and relieved. Sometimes I have felt all of these things at the same time. The worst is being ambushed by feeling bereft. In my case I try to remember to breathe and give myself time. I too have started taking my dog for daily walks. I am also forcing myself to rejoin the world. Like you I have lived a specific and constrained existence for a very long time. Surprisingly, I have experienced fear while rejoining the world outside my door.
Ultimately, I really only have three things to say: you are NOT alone, what you are feeling is normal and give yourself time!
Be kind to yourself and give yourself lots of time to rebuild how you want to live your life. Do not rush the process. Put things back into your life little by little. It takes longer than you might expect, but that's OK. The things you build slowly will be more authentic than things you do b/c you think you "should," Rebuilding is a careful process.
The best thing is to get involved with something else. Volunteer to do something. That is what I am doing now I volunteer doing taxes.
Talking with someone is good for us.
Prayers
It is incredibly normal to seem a bit lost. Give yourself enough grace to grieve.
Do the legal stuff you need to do...Wills, insurances, funeral stuff. BUT, aside from that don't do anything major right away
If you get an inheritance or insurance payout...don't make big decision for several months
Slowly re-integrate into life. Caregiving is extremely isolating.
A couple of things I did was finally getting into a church and
Simply taking my dog on her walks in different areas of my town.
Well put Cashew and good to see you.
I recommend a good book for you to read, Finding Meaning: The Sixth Stage of Grief, by David Kessler
In 1969, Elisabeth Kübler-Ross first identified the stages of dying in her transformative book On Death and Dying. Decades later, she and David Kessler wrote the classic On Grief and Grieving, introducing the stages of grief with the same transformative pragmatism and compassion. Now, based on hard-earned personal experiences, as well as knowledge and wisdom gained through decades of work with the grieving, Kessler introduces a critical sixth stage: meaning.
Kessler’s insight is both professional and intensely personal. His journey with grief began when, as a child, he witnessed a mass shooting at the same time his mother was dying. For most of his life, Kessler taught physicians, nurses, counselors, police, and first responders about end of life, trauma, and grief, as well as leading talks and retreats for those experiencing grief. Despite his knowledge, his life was upended by the sudden death of his twenty-one-year-old son. How does the grief expert handle such a tragic loss? He knew he had to find a way through this unexpected, devastating loss, a way that would honor his son. That, ultimately, was the sixth stage of grief—meaning. In Finding Meaning, Kessler shares the insights, collective wisdom, and powerful tools that will help those experiencing loss.
“Beautiful, tender, and wise” (Katy Butler, author of The Art of Dying Well), Finding Meaning is “an excellent addition to grief literature that helps pave the way for steps toward healing” (School Library Journal).
You can find the book on Amazon.
My condolences on the loss of your dear mom.
I know that after my husband died who I cared for for many years that I seemed to wander every day for months wondering what it was that I was supposed to be doing next.
Don't worry though, in time you'll figure out your new routine and what your life will now look like. And you will find joy again too.
So take this time now to take care of yourself. You deserve it.
God bless you.