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I have done this for so long (since 2005) that I hardly remember life before caregiving. I want to dream about living my life with my husband, daughters, friends, etc. but don’t exactly know how. Did I forget how to look forward to things?


Half the fun is anticipation of doing something that I have been wanting to do, like trying a new restaurant or seeing a play at a theatre and I no longer have that in my life. I have had the same routine forever!


I wonder how it will feel without mom in my home.

Mom, is gone. I feel pretty bad and empty, honestly. It's almost a year now. I am an orphan. I am starting to get back into a "normal" life style. I am slowly taking my head out of the sand...

Mom is an important part of my life. I remember when her mother died. She would wake up in the middle of night, and just start crying. I do that too. I can't sleep a lot of the time.

You don't get over it, you go through it, sometimes roughly, and sometimes calmly. Every day is different. I miss my parents. Losing dad was hard; losing mom was that much harder. We took care of eachother for many years. She lost her sister, I gave her a reason to keep going, I had a baby for her to look forward to seeing and helping out.

Mom got ALZ, we danced together.

Take it easy, go slow, it is a process, and talk to her in your heart , out loud, whatever it takes. She hears you, and most likely will answer you too :)

You are not going to happily bounce back, no way, you love your mom, but with your family and friends, you will get through it. It is okay.

When my dad got cancer, I was afraid to talk about the 'END'. No way was I going to have that conversation. I had to, we had to. He got cancer. With mom, there wasn't talking about it, she got ALZ. Towards the end, she couldn't talk. I ache thinking about it.

It will take time, but you will get there. Eventually, I will get there too.

There is no set time for grieving to stop... It is a "wound" and it will heal with time, hopefully... Yes, but there may be some sort of scar.
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Invisible Apr 14, 2019
I know they want and expect us survivors to go on. We owe it to them.
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If you can try doing some of the things you want to do when....now! You never know what the future will hold.
If you need to get a caregiver in for a few hours so you and your Hubby can go on a date do it! There are all sorts of resources that you can use if you can not afford to pay someone. There are volunteer services, if your Mom is on Hospice they will provide a volunteer, lots of church groups will provide a volunteer as well.
If you have a group of friends that you have not spent time with call a few and ask them to come for coffee or tea one day. You could pick a time when your Mom usually naps or late in the evening when you got her in bed.
Part of the problem with being a caregiver is we loose friends as we no longer have time to go to lunch, go out to dinner, go to a movie. You need to keep those connections. Or rebuild the ones that you had.
Start thinking of what you want to do. Work part time? Volunteer? Travel?
If possible put Mom in respite and take a little trip. Something as short as a week will be amazing and will feel like a month, then it will feel like a weekend all at once. Time has a funny way of contracting and expanding at both times.
And do not feel "guilty" about having a caregiver come in or a volunteer or putting Mom in Respite for a while. You do these things to make you a more effective caregiver and daughter by recharging you. You do not expect your car to run without maintenance do you?...this is maintaining you.

One of the things I learned a long time ago, I read an "essay" that sort of formed my thought process while I was a caregiver for my Husband.
This is that essay.
The Station
Robert J. Hastings
Tucked away in our subconscious is an idyllic vision. We see ourselves on a long trip that spans the continent. We are traveling by train. Out the windows we drink in the passing scene of cars on nearby highways, of children waving at a crossing, of cattle grazing on a distant hillside, of smoke pouring from a power plant, row upon row of corn and wheat, of flatlands and valleys, of mountains and rolling hillsides, of city skylines and village halls.
But uppermost in our minds is the final destination. On a certain day at a certain hour we will pull into the station. Bands will be playing and flags waving. Once we get there so many wonderful dreams will come true and the pieces of our lives will fit together like a completed jigsaw puzzle. How restlessly we pace the aisles, damming the minutes for loitering--waiting, waiting, waiting for the station.
"When we reach the station, that will be it!" we cry. "When I'm 18." "When I buy a new 450SL Mercedes Benz" "When I put the last kid through college." "When I have paid off the mortgage!" "When I get a promotion." "When I reach the age of retirement, I shall live happily ever after!"
Sooner or later we must realize there is no station, no one place to arrive at once and for all. The true joy of life is the trip. The station is only a dream. It constantly out distances us. "Relish the moment" is a good motto. It isn't the burdens of today that drive men mad. It is the regrets over yesterday and the fear of tomorrow. Regret and fear are twin thieves that rob us of today.
So stop pacing the aisles and counting the miles. Instead climb more mountains, eat more ice cream, go barefoot more often, swim more rivers, watch more sunsets, laugh more, cry less. Life must be lived as we go along. The station will come soon enough.
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NeedHelpWithMom Apr 13, 2019
Oh, Grandma

I love, love, love your answer! You need to bottle your attitude and sell it! Or better still, give it away to those in need.

After reading your response I am starting to see through your eyes just how lost I have been. Thanks so very much. Hugs!

You are someone that I would love to share a cup of coffee or tea with. I have a feeling I’d walk away with a bit more wisdom than I had before.
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cmagnum,

I do have to try not to over do for mom. Awhile back after mom’s fall the doctor ordered home health with nurse, physical and occupational therapy. The nurse and therapists told me that I was doing too much and to back off where I could. I’m learning. They also encouraged mom to do what she could. Although, she hated their expression, “Use it or lose it!” She was exhausted when they left the house. She’s supposed to continue the exercises but it is hard to motivate her to do it. I usually say that it is time for ‘our’ exercises and do them with her like her therapists did. Especially the ones for balance because the falls scare me to death.

Home health was excellent. They do a great job and it is much needed for the elderly.
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My experience has been that after my late mother passed that I continue to be a part of this forum, else if I did not - I may lose myself.
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NeedHelpWithMom Apr 14, 2019
Nice that you stick around to help us. Thanks😊
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My Mom passed 3 months ago. I can’t offer any help because I am struggling with this right now. I can only tell my feelings.

I was full-time 24/7 caregiver for my mother for 4 ½ years. I took care of her needs daily for 17 years previous to that. She had a massive stroke in July 2014 which resulted in brain damage, memory loss, and severe dementia. She no longer acknowledged me as her son. She needed assistance with everything she did. She spent all her time in bed except for going to the bathroom. Working through all the confusion, agitation, arguing, and fighting was very stressful. Many times I thought I couldn’t stand it one more minute. There were also good times when we talked and laughed and her old personality came through, if just momentarily.

When I was caregiving I thought I had a clear vision of what I wanted my future life to be like. I thought I had it all figured out. I had already suffered the loss of my (real)Mom. I was going through anticipatory loss. Since Mom died I really don’t know. I feel like I don’t know anything; what life is about, what my life should be about, how to reinvent my life. It is all still very new. I never thought I would feel like this. I have been through 6 weeks of grief support. This helped me very much.

I had my Mom for 92 ½ years, but when you love someone it is never enough. I miss her a lot and I believe I always will. She taught me so much; patience, compassion, empathy. Taking care of my Mom is the most important thing I’ve ever done. As difficult as it was, I would do it again in a heartbeat. I still feel her presence. She speaks to me and says many of the things she used to say. Sometimes her spirit returns to remind me of something funny we said or did together to make me laugh. I seem to miss the hugs the most. She will always be with me.
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Invisible Apr 14, 2019
I think we are in the same place.
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I want to express my thanks again to this forum. You all are helpful, insightful and compassionate. It means a great deal to me. 💗
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Hello,

Post caregiving is a bit of a shock as a chunk of your life purpose has gone and the void arrives abruptly. But as with everything in life, you do evolve, adapt and recalibrate.

Be patient with yourself as you shift into your post caregiving life and freedom. Ask friends and family for assist now also as having a less abrupt role change may ease the transition and will provide balance now.

Bless you on your journey.

K
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NeedHelpWithMom Apr 13, 2019
Thanks KTelderguide,

Ahhhh, a voice of wisdom. Please keep reminding me to ask for help. I get so stuck of doing everything myself! There is no separation between mom and me. There is such a thing as too much togetherness.

I need to call council on aging this Monday, we have been approved but they didn’t know when services will begin. I need to check up on it again because I will then have help with bathing mom and a small amount of respite time. Yay!
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Losing my mom felt like a punch in the gut even though both my brother and I knew the end was near and we started preparing ourselves. She had ALZ and pretty much lost all her will to live after my dad passed 4 years ago. She died two years to the day after he did...12/31/14 and 12/31/16 (yes, I lost both parents on New Year's Eve). Her passing was both painful and a relief. She'd suffered so much in her final weeks.

The first several weeks after Mom's passing were a blur of funeral arrangements, contacting family and friends, the funeral itself, emptying out her apartment, probating Mom's will and disbursing the funds between my brother and me per the will. Because my brother is on the autism spectrum I checked in on him frequently. And through it all I kept chugging along running my piano studio and taking care of my husband and our daughter. Sometime around the middle of February, which is a bleak time of year to begin with, I found myself home alone with all this extra time that used to be taken up with caregiving and fell apart. I cried nonstop for hours, finally allowing myself to grieve.

Even after two years, once in a while I still unconsciously pick up the phone around 7 in the evening to call Mom like I used to. Every piece of good news brings the urge to call Mom to share it. Each time the grief feels fresh. It has gotten easier, and it will in its own time for you, too. There's no statute of limitations on grief. My MIL died suddenly of complications of diabetes at age 56 13 years ago and my husband still hasn't really processed it.

But you will learn to create a new "normal" without your mom. You'll eventually be able to think about her with a smile instead of tears. You'll be ok. Hugs to you.
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NeedHelpWithMom Apr 13, 2019
Wow, TSPiggy

My great grandma died on New Year’s Eve too. I lost my dear MIL when she was fairly young also.

I did pick up the phone and dialed my grandma after she died. I still remember her number and she’s been dead over 30 years! I spoke to her everyday on the phone and visited every week. I adored her. I couldn’t eat after she died.

My husband got so upset because I only weighed 103 and he was concerned that I would go below my high school weight of 96 pounds, I have always been small. I had to force myself to eat. When I get really upset, I lose my appetite and simply can’t eat, not hungry.

Yeah, I know what you are describing with feeling a ‘punch.’ It’s awful!

Thanks for sharing your honest and heartfelt feedback. I appreciate it.
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What I've learned:
* The main - or only - preparation for losing a parent is to live in the moment of awareness and gratitude. BE PRESENT.
* You may feel lost. Grieving is different for everyone. What worked best for me was diving into those feelings, not try to avoid them. Grief is real and is a process to get through.
* It is an adjustment. Getting involved again meeting people (church, Meet-Up groups may not feel comfortable at first. Give yourself this emotional and psychological wiggle room.
* Be self-compassionate. Observe how you feel in new situations. Do not judge yourself. See or experience the unknown as an adventure.
* Realize whatever you do, and however you are pro-active, is one step at a time. You may feel very vulnerable, like a child. Embrace your child inside. Give her lots of hugs and support. Gena
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NeedHelpWithMom Apr 13, 2019
Touchmatters,

I like this answer very much. I appreciate you sharing your experiences. Thanks for your encouragement.
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I took care of a friend that I had known for 15 years. Her kids hired me when dementia hit. She was really rambunctious, challenging, and imaginative with her mind games. I frequently felt that I was being outsmarted by an 84 year old with dementia. I ended up working crazy hours, and I felt like I was reinventing the wheel every other day. Even though I am not family, and I was paid, when she died I was often at a complete loss as to what to do with my time. I felt like I was in slow motion, and I didn’t know how to choose what to do after barely taking time to sleep or breath for so long. Two months have passed, and It has gotten better. Some days I am still practically comatose. I think that we bury our own needs and desires for so long, that it takes a good while to process through such a complicated and psychologically fraught change. It is akin to running, running, running and then being stopped very suddenly.
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NeedHelpWithMom Apr 17, 2019
Thanks for sharing. Appreciate it. Helps to know that we aren’t alone.
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