Former caregivers, how have you adjusted to your new life?

I am experiencing the very same struggle of how to move on. I think for me what has compounded the situation of moving on is in some way caring for a person who was struggling with dementia seems to complicate in many ways the grieving process. Even though you have been grieving losing your loved one for so long in the process in the end you are left with so many unknowns in terms of their thoughts and feelings as they could not express any of those things about their life, living and dying etc. You can only hope that in some way they felt that you did your very best for them under the circumstances. I think a lot of the 'unknowns' have made it difficult for me to move on so to speak. This is a great question. I look forward to reading the responses and learning what has worked for others. Thank you.

It's a difficult transition. I cared for my husband for 35 years, dealing with permanent brain damage, lung disease, and finally Alzheimer's. The first year was spent resting my mind and body while reflecting on that long and challenging journey. This is what has helped me the most...
1. I developed curriculum based on my experience and led several 7-week classes at my church to help others. Believe me, it helped me as much as them.
2. I recently started my own blog where I post new info each week. One of my categories is about facing the end of the caregiver journey and how to move through the void that is left. You might find this helpful.
3. In hopes of reaching more struggling caregivers, I'm writing a book which I hope to have finished by Labor Day.
4. My daughter and I started selling crafts via Etsy, and I spent time learning lots of new crafts.
5. I purchased a folk harp and am teaching myself to play. It's slow-going but very rewarding.
6. Gardening is a very satisfying activity as well, and I love the fresh veggies.

All of these things have given me new purpose and joy in helping others. I'm not saying you have to do these things, but know that there are many life adventures waiting for you. It's important to give yourself time to heal and reflect. Acknowledge to yourself what a blessing you were to your mother and rejoice that you had the opportunity to care for her.

Wishing you all the best!!! with a (( (HUG))) !

Dear Gershun:

I am sorry for your pain and confusion. It takes time.

After my mother died, I did volunteer work for a hospice. I agree with the famous writer and Holocaust survivor, Elise Wiesel, who once said "The best cure for despair is to help others." I also refocused on an earlier dream and began writing again. Eventually my writing became a book about the years my mother lived with me and how we healed our relationship before she died. It's called, The Space Between: A Memoir of Mother Daughter Love at the End of Life which was published last year. Writing and reliving her last years was painful and extremely healing.
I miss my mother every day and know that our relationship and the pain of her absence have been interwoven into my life and there will be times I laugh as I remember her and times I will laugh.

Everyone's situation is different and we all know caregiving is not easy. I was married for many years when my husband passed, then a year almost to the day after I lost my husband, my dad got sick and moved in with me. I hadn't even adjusted to being widowed and alone when dad got sick, I almost can't remember what it's like to not be a caregiver at this point. It's going to be hard when my dad is gone. As far as losing a parent, I lost my mom when she was 58, we were very close, it helped having my husband at that time. I've seen a lot of loss since. I'm trying to prepare for a life alone without caregiving in it and it is difficult to imagine. It is rewarding for me that I know I'm doing the right thing for my dad by taking care of him. How do you build a life for yourself when you're a full time caregiver? How many caregivers have been left standing alone to take care of a loved one? How many have lost friends do to the time it takes to be a caregiver? I figure when my dad is gone, I'll travel some and jump into volunteer work, it seems to be the natural course to go for me.

You and your husband. So why can't your husband be your everything?

I had an aunt that moved because she couldn't bear to be in the house they shared after he passed.

You cannot run away from your past. My aunt still missed her departed and now didn't even have the house that held so many happy memories. Think on this carefully before you make that huge a move.

I would think this is the time for you to maybe renew your wedding vows - if your mother was your everything, where does your husband fit into the picture?

I know, I sound harsh, but you had to know that at some point in time, high probability your mother would pass and leave you behind.

My DH cared for his first wife who was bedridden the last 1.5 years (minimum) and 6 months after she passed, we met. He had asked a lot of people what to do and they all told him to find someone new.

You can't do that, you already have someone - maybe it's time for you and your DH to start living again. Go out on dates together and start enjoying whatever life is left to both of you.

When someone dies after years of caretaking, there is a big hole there. Whereas your schedule revolved around their life, now you don't know what to do next. Where before there was so much to do, now you don't know how to fill the hours.
My advice is like so many others, find something you like to do, whether volunteering or a part time job. Be grateful you were there when you needed to be, and you fulfilled one of the greatest commandments, to honor your father and mother. Your parent would want you to be happy and fulfilled. You can google volunteer opportunities in your area, there are so many places that need help, the library, daycares, adult daycares, RSVP, many many more. I would find out about working with children, something completely different than working with older people. Many schools need people to read to children, or listen to children read to them. Our gradeschools are always looking for a "grandparent" for each classroom, some are unpaid jobs, some are paid a stipend of a couple of dollars and hour. Nothing will beat the blues like being around laughing children. Prayers for you to find the right next step in your life, and God Bless you for taking care of your mother when she needed you.

I volunteer for the Hospice that helped me care for my Husband.
It is unusual but I had started as a volunteer while he was on Hospice so I have continued. And since I have a bit more time I have increased my volunteer time.
I do things that my Husband would have loved doing. I see something that I think he would have liked and I think of him...I go someplace that he liked, I think of him...I make a meal that he would have particularly liked and I think of him...I do these things and I feel him a bit.
I feel if I stop doing the things we liked to do together it is another way that he is gone.

Now as for your Mom...and you...
She is not gone.
She lives in you.
How many time has someone in your life said to you, you have your Moms eyes, you look so much like your Mom, you have her hair, you have her....whatever.
I bet you have some of the same mannerisms that she did, the same way you fold laundry, the way you do something as simple as the dishes. These were how your Mom did things this is how you do them because she taught you.
She taught you to be strong, independent and resilient. (..I can not get my Dad's soup or pasta sauce right nor my Moms stuffing but I am strong, resilient, and independent because they taught me those things also)

So live YOUR life that is what your Mom would have wanted, that is what she spent her life teaching you.
And when you do see something that she would have liked thank her.

Mom's estate arrangements gave me no official capacity -- other than being one of a handful of heirs. Mom assigned all the official capacity to someone who lives far away and had no exposure to Mom's day-to-day. Someone who didn't know where any of Mom's important papers were; knew nothing about Mom's monthly overhead or investments; didn't know Mom's maiden name or SS number; etc.

Enter me. I am Mom's only birth child. And no, I'm not required to be the answer lady and the facilitator and the regional liaison. But I'm not an azzhole. And neither is the executor and the fellow heirs.

Oh, and I'm the only one who lives less than 100 miles from Mom's primary home and other real estate interests.

Over the past 10 years, Stepdad and Mom refused to have even one intelligent adult conversation with ANY of us about ANY of this.

For the past 18 months, I've been on the hamster wheel as much as the executor. Sometimes more than! But I cannot sign a paper, write a check or make a decision.

This type of self-sacrifice is right up Mom's alley. And this, too, is my inheritance. Along with the nitty-gritty inheritance -- which is taking too d*mm long to resolve. And would take even longer if did not participate at the level I have been.

Exhausting. I cannot remember what life was like before Stepdad's and Mom's deterioration and deaths became our prime directive.

I never thought I'd be "this person." But here I am. Some days, I don't have much left in the tank. And there's still no end in sight. 

My Dad passed away last Sept. I was so busy still with Moms care that it never fully registered. But, when Mom passed last month...I was simply lost. Suddenly..I was actually alone. Alone in their big house...surrounded by all the stuff of a lifetime.

I have spent nearly all my waking hours staying busy. Sorting the house and getting it ready for sale. Selling or giving away a small mountain of stuff. Sorting the papers (Mom never threw any paper out). Sorting her accounts, and finding everything.

The rest of my time is being spent getting my RV ready to hit the road. I plan to spend this coming winter in the desert near the Arizona/Mexican border.

So..the answer for me is...staying busy.

Yes, I am one who recently lost my Mother. I am trying to move forward but it is difficult for me she was my world. I am the youngest of five. She and I were very close. I starting to have panic attacks when driving , depression .

Speaking as an older parent, I hope my two children don't feel the pain/sadness of separation as some are feeling. You have taken such good care of your parents and did the best that you could do. That's all anyone would ask of you. I'm sure they feel/felt the love you gave them. Miss them, but know they are in a much better place and finally at peace from their sufferings. God bless you!

Dear Gershun,

I can relate. I do the same thing and no one around me wants to hear it anymore. I too go back to the sad moments. I let them replay in my mind. I torture myself. I berate myself. Then I say stop. But it starts up again every month around the day my dad passed. It is a vicious circle.

Dear cetude,

Thank you for your perspective. Its true. We do have to carry on and start a new life. And knowing how life unfolds another challenge or sadness will present itself again. And the pattern will need to repeat itself. Life is so short. I know I must do more to enjoy the time I have left.

Perhaps the only good thing about life is knowing how temporary it is--my mom is steadily declining but I've been dealing with her Alzheimer's for 8 years now --over the past several years it has gotten severe--and it's getting steadily worse..with no hope in sight. So it is a slow agonizing process for the caregiver. I now live and breathe as my mom's constant shadow having to attend to her every need and it's backbreaking struggle fulfilling them. She can become dead weight when I try to help her, but she's still capable of walking when it suits her.  Right now the center of my life is her bowels.  If she does not go in a few days she will get impacted and the feces will have to be dug out. So every other day I give her a lot of prune juice and  hope it happens.  If she goes she cannot clean herself so I have to do it.  Yes it is disgusting but I have no help. I just put on the gloves and do it and try to shut my mind off.   She no longer goes to the bathroom to urinate--she just goes in her diapers.  When I eventually get her on the toilet, she will just sit there and not go.   This is now the center of my life: Keeping her clean and attending to her bowels. It is a very miserable and back breaking existence. But I still love my mom more than life itself. I would not know how to cope when she dies. You definitely will have to forge a new life for yourself if you are to survive. Just as I will. And if we don't we will be destroyed by our ties of love -- when our loved ones die their suffering has ended; for the caregiver it has only begun.  Perhaps my meager description of my life will remind you of what you probably had to go through and you are free of that. And she will no longer suffer..but the suffering will linger for you.  I can't imagine my life without my mom. But it will happen one day. 
I just thank God I have no children. I don't want them to go through what I'm going through now.  That is the price of love: Suffering.

Frequent Flyer, I can talk about fond memories of my Mom without crying but when I am in bed at night I really have to force my mind to stop going to the sad moments in the hospital when she was dying. I don't know why my mind constantly wants to go there. It's like having a scab and constantly picking at it. You know it's going to bleed again and have to scab over again but you do it anyway.

Another thought, it is interesting how each of us view the passing of a loved one. My sig other and I are polar opposites to this passing of time.

My sig other had lost many family members and all I know about them is the one week or the day of their passing. My gosh, these wonderful people spent decades on earth and all sig other can talk about his their death. Over and over again. Like the people died on purpose to make him so sad. Sig other's grown daughter is like that, too.

Both my parents were raised on a farm so the circle of life was always present. When their parents and relatives passed, they were sad but before I knew it they were taking about good memories of those love ones. Thus I had learned from them.

Dear Gershun,

I'm so sorry to hear about what happened at your mom's memorial bench.

I hear where are you coming from. I have promised friends to stop ruminating and to try and focus on the present. They tell me, do not think about the past or even future, just the present. I too led a very quiet life. I made my life about my dad. The part that is holding me the back is also the anger with the siblings. My dad lived to 84 but I feel if they had helped me, supported me, he would still be alive today. They say that grief could last up to 5 years. I am still working with a grief counsellor to understand my feelings.

I found this letter at griefincommon.org, I hope many of you will find it helpful:

“Dear Self,

Being a caregiver is hard. It is an honor and it is a privilege, but it is HARD.

At times I feel I should know more, or do more – yet I can only know or do what I am capable of knowing or doing.

While I may have support from friends, family and the medical establishment, in the end- the decisions rest entirely on my shoulders.

I have no ability to predict the future. I don’t know what treatment, pill or therapy is going to work or not going to work. I can’t say for certain that the choice I’m making is the right one or wrong one. I lack the ability to stand at a crossroads and simultaneously take each road so I know which will have the best outcome. I am always crossing my fingers, spinning the wheel of chance, and hoping for the best.

I need to remind myself that at most points in life there are rarely clear cut right and wrong answers and usually a whole lot of grey area answers somewhere in between.

I have to remind myself that the person I’m caring for has choices, and has made choices, and that I am not (or have ever been) totally in control of what happens.

I need to remind myself that I’m doing my best or that I have done my best. Some days my best was not very good. I need to forgive myself for that. If I’m telling myself that I didn’t do my best, or not as well as I could have, I will remind myself that I also never set out to do harm or do things badly.

I need to release myself from guilt for any thoughts I may have had about wanting this to be over. It will serve me better to remember that I have only ever wished away a time of confusion, pain and exhaustion. There was never a time where I didn’t want my loved one here with me, healthy and happy.

I need to let go of things that have happened. If a decision has been made and I feel I “should” have done it differently or better, I need to remind myself that no amount of thinking, ruminating, or obsessing about what has happened in the past can change or improve my present or future.

I will devote my thoughts to my loved one – who they are or were, what they have meant in my life, and what they would want for me in my future. If I feel myself sliding back into the “should” haves and “shouldn’t” haves, I will feel their loving influence direct me back to a path of caring for myself.

I will struggle and I will persevere. I will be gentle and patient with myself. I will take help when it’s offered and when I feel it’s right. I will take time to be by myself when I need it, and I will try to surround myself with people who understand what I’m going through, if that is what will help get me through the day.

I will do all of this. And I will do it every day, until I no longer need to do it any more.“

For anything that’s left – if there are apologies you want to make, or forgiveness you need to find for an apology you know you’ll never get, for the “should have” and “shouldn’t have” thoughts that circle endlessly in your head, write them down.

Recognize how freeing putting our thoughts on paper can be. Releasing them from a mind that will never let them rest, to a piece of paper where they can be recognized, honored and finally freed.

Know that sometimes, the tangible act of writing to yourself or your loved one may be the only thing that’s left to do. And perhaps the only way to free ourselves, forgive ourselves, and move ahead.

____________________________________________

I am in a very different place than the rest of you who have commented so far. I took care of my mom and dad for 9 years and my mom for an additional 6 years (15 years in total). She died two months ago. We had a very good relationship and I did everything I could to make her life and death as comfortable as possible. She died after a week in hospice, in her own bed with me there. My brother didn't bother to come back for her last week (or for the past seven years for that matter).

I'm single, never married. But over the past three years, because I saw this coming, I have cultivated a newer group of good women friends through different meetup groups who supported me as my mom was entering her final phase of life.

At the end, I had said everything I wanted to say and she was ready to go (at 97.5), which made it much easier on me. I took a job for the past year for a non-profit that has been very emotionally satisfying for me. It is coming to an end in another month. Rather than being fearful, I am ready to spread my wings (at almost 67) and do some traveling and just enjoying life. And then I'll figure out my next adventure and purpose.

The visiting nurse told me that my mom was very worried about me and whether I'd be OK after she went. I'm more than OK, I'm at peace and greatly relieved that my mom went out exactly as she wanted to. I'm not sad about her passing, I'm just grateful for the time we spent and that I was able to make her life as good as it was. I did everything I could and left nothing on the table.

My friends keep asking me if I'm OK and I am! I closed out her apartment by myself, have pretty much settled her estate, am sorting through her things that I brought to my place...I have only happy memories, not sadness. I hope the rest of you can find peace and purpose in the coming months. It's a great place to be after devoting so much time and energy to caregiving for our parents.

cdnreader, I have a memorial bench for my Mom at her favorite park that was right across from her old apartment bldg. where she lived for many years. It's a five- minute walk from my place too so I can go there and visit and reflect. Sadly, they found a 13- year old's dead body there this week which saddens me, for the obvious reasons but also cause it's put a blemish on the park for me.

I think getting over a parent's death is so dependent on the kind of relationship you had with them when they were living. My Mom and I were so very close. I just don't even know who I am without her and I have had two whole years now to figure it out.
She was my best friend and I never went out and tried to make other friends. So now it's just me and my husband and my cats. I have siblings but we aren't really close. I am still so mad at all of them for how they left me holding the bag when mom was dying. How does a person get over all of that? I'm still hoping someone will come on here and shine some light on this but also I am well aware that we are all individuals and what works for some may not work for everyone.

I'm starting to think its minute by minute some days. My other suggestion would be to find ways to honor your parent's memory. I thought about planting a tree, buying a memorial bench, donating to my father's favorite charity and ensuring he has fresh flowers at his grave site. My father was such a quiet man, but I still want to do things to make him proud of me.

One thing I did to help adjust to my parents passing [a year within each other, they were in their 90's] was that I started climbing the family tree with the help of Ancestry plus my Dad had already started a search which I never knew about until I cleaned out their house. It was THE best therapy for me. Being an only child who always lived far away from my grandparents and the other relatives, this brought me closer.

My Dad's grandfather was a professional photographer so my parents had inherited a lot of family portraits, mainly of people I had no clue who they were. It was fascinating seeing how they dressed in the 1800's and the type of work they did. One of my Dad's Aunts had her doctor's degree in chemistry which was very unusual back then. She lived to be 103, never married. Dad had two uncles who both each had a dozen of children. Other relatives had a half dozen. Farming was the main occupation thus a lot of farm hands were needed, so you created your own.

It also was interesting to see the cause of death in the family to see what health issues were passed from generation to generation. Hypertension seemed to be the main issue, which I have. I always was curious where I had inherited a slight lazy left eye which corrected itself once I got out of my teens, and looking through all the old family photos, ah ha there it was, my great-great-grandfather had the same lazy left eye when he was in his teens.

Gershun, I was not the one-on-one caregiver for my mom, but we spoke by phone daily and she and I became adult friends after a rocky road for many years. I miss her every day, but I look for her in my son, nephews, etc. I think life after caregiving is much like life after children move out - my son moved out and I was his focused caregiver due to his autism. He is doing well now and requires far less attention which left a part of me a little adrift. Having a part time job makes a HUGE difference. My sister found that living in Mom's house after she died actually added to her depression. Find the things that are your mom in living items, not a location or objects. Maybe take a gardening class - volunteer to be a child advocate - join a bowling league - heck, my mom taught Vacation bible school through her church for years without being a member to transition after my brother died. Hugs to ya.

Thank-you Cdnreader, Ms. Madge, Countrymouse Maybe together we can all figure it out. One thing I have started doing is writing in a journal. I've always heard this was helpful but was skeptical. Turns out it does help a bit.

Writing out your thoughts on this site may also help. A form of public journalling if you'd rather.

Following this thread. Any tips welcome.

Dear Gershun,

Thank you for asking this question. I feel the same, my friend. I find it terribly hard. I won't stop ruminating about the past and what could have been done to save my dad. My failures loom large and torment me still. Some people around me have also suggested moving out of the neighborhood. It is a consideration. But at the same time, I feel like I am erasing my dad from my life. Maybe that is the grief again. One step forward and then 10 steps back.

I do try and take baby steps in moving forward. I have tried counselling, grief supports, reading, writing and taking classes to occupy myself. I know I still have a lot of years ahead of me. I should live well in honor of my dad, but I continue to wish he was still here.

Thank you for always thinking of us caregivers. And for remaining so compassionate and kind.

Good question