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.
It’s just difficult. Isn’t it? I understand. I feel isolated also but my isolation comes from being a ‘full time caregiver.’
I don’t think I would stay though. Not because I haven’t enjoyed it or found it useful. Not because I wouldn’t want to help others. I would want to close this chapter of the book. It would be painful for me to rehash everything.
Supposed to be cathartic but not always for everyone about everything. Sometimes it is better to let it go if it isn’t helpful.
I now have 8 hours of respite care from Council on Aging. Not a lot but I am grateful for something. Something is better than nothing, right. They said they will bathe mom while here. So if I split it up into 4 hour slots then I will only have to bathe mom every other week. Yay!
They will also change sheets, some food prep, that kind of stuff.
They start Thursday afternoon. Yay, I can relax for a few hours. I checked with the agency that they use for sitting services and they do drug screening and background check. They try to send the same person as well. That doesn’t matter if they use different people. Home health used different people and it didn’t bother mom. Might bother some people though.
Your answer makes sense to me.
Now my dad is sick and I have again moved myself into his home and taking care of him. Sometimes it is hard to separate his life from my life. I am pretty much doing this on my own as my brother passed a year ago. I do take time out once every other week and go to my house , but all i really want to do is just go home and sleep.
I completely understand how hard it is looking forward to things. I do leave abpout every other day and go to the store just to get out of the house and now that it is warmer I can take the dogs for walks.
I look at it like this one day at a time and breathe in and breathe out.
I wish you the best and try to just do what you can do both emotionally and physically.My prayers are with you.
I loved my mother, and I'm sure that she loved me, but our relationship had always been rather complicated. She was an "alpha woman", and I am the same. I believe she felt threatened by my strength, and frustrated that I neither relied on her to direct my life, nor did I succumb to her demanding personality. Not that we ever really fought...I was just confident enough to do my own thing in life without reference to her opinions if they conflicted with mine. My younger sister bent over backward trying to gain mom's approval, and mom loved that. She was, in fact, very controlling.
What I'm getting to is, it seems that whatever sort of relationship you had with your parent will intensify after they are gone. I'm still sorting out various complicated feelings about my mother, and coming to grips with the fact that I can no longer resolve issues with her face-to-face. That's okay...I know I will eventually work it all out and I will take all the time I need to do so.
Bottom line is, we all need time to sort things out after the death of a parent, and there is really no "time limit" involved. It could take weeks, months, or years. One of mom's hospice care people told me that it wasn't uncommon for the loss of a parent to really hit home two or three years after they're gone. I guess we shouldn't expect the same experience as someone else...and we shouldn't be afraid to ask for help if we find ourselves headed in a direction we aren't comfortable with. But do give yourself time, allow yourself to grieve, and cut yourself a lot of slack. But remember that your ultimate goal is to get back to your life and feel good about it. Good luck, and God bless.
For everyone that has experienced a loss of a loved one they were caring for, you are all in my thoughts and prayers. Day at a time.
Grief comes in waves. You are being knocked down by that wave at the moment. Hugs!
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.
It took some time and I started small trying to rediscover what I wanted to do....I don't think I had time to do that fully as I got thrown back into the caregiver life. It helps me to keep a jounal and lists of what I might like to do, if I can.
So sorry. Yeah, I can understand you distancing yourself from your friend. She isn’t very sensitive to you in your situation.
I had thoughts of losing my parents since I was five years old. When I was 36 years old, as I saw my 80-year-old male friend who acted confused, and had onset Alzheimer’s, my depressions, and fears of losing my parents were getting worse. I couldn’t imagine what I would do without my parents. My doctor gave me an antidepressant. At the age of 40, I was beginning to think God was watching me, right after mom recovered from breast cancer, TIA, and my dad was recovering from prostate cancer. Also, the help from the state came through within two years and received several personal care assistants.
At the age of 44, my mom’s personality was change like her moods were shifting, and arguing with my dad every single day for no reason. I thought it was because he was drinking until he gets drunk every night, but no. On Thanksgiving night, my dad broke his wrist. My depression had become worse. I was thinking “what would I do w/o them?”
As the end of their lives progressed, I was crying at nights; I didn’t sleep well, worried all the time, and very stressful. I ended up taking care of them as much as I could; a reverse situation of them taken care of me for 47 yrs.
When each of them passed, I felt relieved for them, and me, too. However, I enormously miss my mom’s hugs, cooking, and going out to the theaters, etc. with her. Also, I miss my dad’s sense of humor, going fishing every weekend, and helping me with electronics since I cannot use my hands because of my hands.
The grieving process takes time. To heal the wound in your heart is to talk, think, touch, take, and time (five Ts). Also, writing and/or doing some art help to keep you occupied.
Think of your life with your mom is the end of the chapter, and make room for the new one.
Hugs!
Your story touched my heart and gives me much food for thought. I think some of us are deep thinkers because we care so much. I feel your honesty and heart come through your words but mostly I see how deeply you love those you care for. I admire and respect that. Your parents were blessed to have you. I wish you well.
My stepmom was diagnosed with pancreatic cancer, she knew way before she told us. She did her best to put my Dad in a NH before she died. She was wanting to leave both estates to her sons. She died on June 30, I haven’t had time to mourn my Momma.
My Dad has dementia so I am sacrificing my health to keep him in his home. I’m disabled from a brain stem stroke & I am now on a lot of medications for anxiety, crying, PTSD.
I can’t make the decision to put him in a NH, I wish I was strong but I’m not, I am so tired & I pray that I won’t wake up most days. Big hug to you!
You have a right to grieve. She sounds like the wicked stepmother for sure! I’m so sorry.
You have so much on your plate. Hang in there and follow your heart.
Thanks for sharing your experiences. I appreciate it.
* 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
I like this answer very much. I appreciate you sharing your experiences. Thanks for your encouragement.
Yes. Exactly, that lonely feeling of isolation.
For me, it’s a feeling in the back of my mind too. That’s interesting to me that the feelings hasn’t changed after your mom went into AL. I guess I was thinking that if my mom goes into AL that my feelings may be different due to not having the 24/7 care. Thanks for sharing.
I was very close to my dad and realized later I had not completely grieved for him due to caring so deeply for mom. I had a therapist tell me that grieving is more complex than we imagine.
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.
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.
There are "fun" and "fulfilling" things in life, and don't we love our fun! I predict that just because you're raising this question now, when the time comes you'll have already forged through the most difficult part of accepting the loss and embracing the fun.
I love this answer! Your insight helps me a lot.
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.
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.
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.
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
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!
Wow! What a touching story. Your mother was blessed to have you. I’d be proud to call you my daughter!
I have two daughters. One is 30 and the other 23. I can’t imagine what you went through at such a young age.
It sounds like you were wise beyond your years. I guess your circumstances during your youth gave you a different perspective than most people in that age group, right?
Thanks for sharing your experiences. Thanks for your encouragement. Appreciate it so very much. Many, many hugs!
I can totally relate to this answer! Watching our parents deteriorate daily is mourning before their actual death occurs. Thanks for sharing.
Your answer made me smile and brings me hope. Thanks.
But yes, there is some relief. The house is mine now. I took down some pictures I didn't like. I've added some plants. I don't watch the news every time it comes on, and there are no more shootemup westerns on the TV, at all, ever. Instead I have Pandora playing beautiful music. I don't have to wash every mixing bowl and pan before I can use it - she insisted on "helping" in the kitchen but didn't see well, bless her heart!
So yeah, there are things I miss about her. And things about her being gone that are kind of a relief. I suppose if we are really, truly honest, it's that way with everyone. I expect my own kids will feel that way about me. And while the funeral home may be playing "Shall We Gather at the River?" they'll be looking at each other and thinking, "Thank God and Greyhound She's Gone!"
You have been a favorite contributor for me on this forum! I always appreciate what you have to say and this answer hits home on so many levels. Thanks! Hugs!
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.