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 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.
You need to start now participating
in activities outside of caregiving. It's not wrong to do things socially, with
family and friends... it's a necessity. So many caregivers have only caregiving
as their life that when that "job" ends there is a huge void.
It's imperative to create a life
separate from your mother, and from your caregiving responsibilities... Attend
your place of worship... get involved in activities there, or participate in a
meet-up of an interest you have... hiking, cooking, cards, dancing, etc...
schedule a short vacation to start, go out to dinner with your husband and/or
friends and leave caregiving topics at home... start now doing things you are
currently putting off... It's imperative and doing things outside of your
caring for your mother will actually make you more compassionate and caring
because you're also caring for yourself and your other relationships.
Yes, you will miss your mother and
the time you have spent together, but it is so important not to put everyone
and everything else on hold... I know both personally and professionally what
that does to our lives...
Start small and you'll discover
that you can have a life now outside of caregiving.
and we breathe...
i went on to live the life of travel we planned...everything I do reminds me that we were going to do it together.
i miss her. I always will
I find your answer so touching. I feel your heart in your words. I had the same feelings for my dad, ‘daddy’s little girl.’ I adored my father. He died in 2002. He was so easy to care for. I was busy bringing him back and forth to the speech therapist and so forth, after the heart surgery and stroke he was never the same. My father was a gentle, humble soul.
I know I grieved for him but was still so involved in caring for mom. I think when mom is gone it will hit me harder.
Mom was still in her home when my dad died. I did the driving back and forth, shopping, doctor appointments, banking, etc. Then hurricane Katrina hit. All hell broke loose, thank God for the wonderful people in Texas that welcomed so many of us from New Orleans. Was hard being cramped into a hotel suite with my girls, hubby and mom. Hotel rooms in Houston were scarce due to so many people flooding their city.
I decided to call a good friend of mine who moved to Houston to have lunch with her, and she asked us to stay with her until we were allowed to go back to New Orleans.
She has a huge house in Texas, a wonderful son and husband and that made our time away much nicer. I will never forget her hospitality. She’s a wonderful friend.
My mom couldn’t return home, nine feet of water, home had to be demolished. We took her in, it was getting to be time for her not to be alone. I had asked her to move in when my father died but she wanted to remain home and I respected that. After the storm, she looked at me and said, “Okay, I will move into your house now.” I guess you might say that Hurricane Katrina made the decision for her. It was an emotional time for all of us. That was my childhood home.
Everything in mom’s house had been knocked off the walls except my graduation picture. Isn’t that funny? My nephew said that it was a symbol of being a survivor.
I do fear feeling like an orphan like you. Is that silly? I am 63!
I cried when I read you danced with your mom, so sweet. We become so intimate when we care for our parents, don’t we?
I loved your response. It helps to see how others are coping. Thanks, MayDay.
We try to pick up, and keep going forward, but me, I sometimes get stuck on the same lil tape reel stuck in my head, and keep going round and round.
Katrina gave you an extra kick that you really didn't need, but you did see the light at the end of the tunnel with caring friends and family, AND your mom decided Now was the time to move. :)
YOU ARE A SURVIVOR :)
I know that you are right. I do know. It’s the logical answer. It is. Just hard. Thanks so much. Food for thought.
I think that is how I will be. Thinking of her continually. We become so intimate in caregiving.
I think I have forgotten how to think of myself because she has been my whole world. I do want to have a part of life for me though.
I can’t actually put my finger on it. I just catch myself drifting off wondering how I will deal with it all. Am I going to fall apart? Will I be numb? Will I feel relief? Relief from doing so much for her. Is feeling relief wrong? I want to do activities that I miss. I’m just not sure what I will feel other than missing her, being relieved that she is no longer in discomfort due to her Parkinson’s disease and so forth. Mom says to me, “It’s hell being old.” Makes me not to want to become really old like her but I want some time left with my husband, grown children and friends.
The thought of time alone with hubby is so sweet to me. I miss that. My mom did not do any of this with her mom. Grandma lived in her own house and still drove! Grandma died at 85, not being sick, just dropped dead one day, her heart just stopped. It’s what she wanted. She always told me that she didn’t want to suffer for a long time like my grandpa did. Well, God answered her prayers! It’s how I want to go too!
If you have not been alone with your husband for 14 years, then that is going to feel like dating all over again. I think that sometimes caregivers are like parents. They get so caught up with who they are caring for that they loose contact with their spouse like some married people do in raising their children. I'm sure you have known of couples who were so caught up in raising their children that they let their relationship with each other slide only to find themselves strangers living in an empty nest.
No one knows exactly how they will react in the future. You may fall apart because she has been your world.
You could do some things now to help prevent that like taking some alone time now with your husband, your grown daughters and your friends. Hire someone to look after your mom while you get out for a break. Taking care of yourself and your relationships like that will feel awkward to start with but it is a way to prepare yourself for the transition when she does die.
You really are correct in your advice. I thank you for pointing all of this out to me. Yeah, I remember being parents in the earlier days, we fell in love with those kids and sometimes forgot about being a couple. It is a good analogy.
It sometimes takes awhile before couples start to notice each other again. I feel like after the kids moved out that I would have loved having my husband all to myself again. Didn’t work out like that but it surely would have been nice. Of course I love my mom. Just like I love my kids but couples need time just for themselves.
Even just being together all the time, concerning habits or quirks, too much togetherness can work on each other’s nerves.
We welcomed mom into our lives and she was grieving over the loss of her home and belongings, cherished memories ruined, etc. due to Hurricane Katrina. So, we replaced everything. She was starting over. Beginning a new chapter in her life. An adjustment for all of us. It simply never went back to how it was. You know, a healthy balance in a family. She was there! Always! No more privacy, ever!
Also, my husband doesn’t want her to feel left out, so when he surprises me with flowers he buys her flowers too. I find that very touching because we told her when she moved in that it was “our home now, not yours and mine.” We truly felt that way. Plus, we were comforting her after the loss of my dad and the storm, etc. The storm changed all of our lives. However, the most important thing was that we escaped the storm and saved our lives. Many died in Katrina. We were all and still are grateful for that.
I know a few couples who divorced after the storm. They couldn’t handle the stress that occurred with it and sadly their relationship crumbled.
Life has many detours and ups and downs. I have proven that I can ride out a storm but I just want to look forward to relaxing and having fun! Oh, I know life happens and there are always mishaps. That’s fine but I need to know I won’t have some kind of guilt complex. Almost like survivor’s guilt and this is entirely a different situation.
My daughter has a friend that had an awful accident with her long time boyfriend. He died and she literally watched him bleed out and die. She went numb. Shock. She stayed isolated. After awhile she began dating a lovely guy and problems began in the relationship.
She couldn’t become intimate again for fear of losing someone again. The guy was patient but finally told her to take some time away from him to figure it out. I think the big trigger happened when she had to appear in court to settle the case as a witness and it rehashed the memories of the accident so vividly in her mind, guess she was dealing with some PTSD. So sad.
I know that my mom and I have developed some sort of codependent relationship and I get concerned about that.
In my opinion, your husband is a saint.
I tell my husband often how much I love and appreciate him. Of course, I did the same for his mom when she was ill with Lymphoma. I helped care for her. I miss her. She was so sweet and her laugh was so contagious! She had a wonderful sense of humor. She was a fabulous MIL. I often thanked her for raising such a lovely son.
Now my MIL’s mom was a totally different story! She was a miserable woman. My MIL would say that most people learned what to do from their moms but that she learned what not to do from hers. Very sad. I took care of my husband’s grandma when my MIL became ill and it wasn’t easy! She complained before being sick, during and even wrote hate letters to everyone before she died. Most want to make peace with others before dying. not her! She was a mess! I suspected she had mental issues but wouldn’t speak to a doctor, therapist or even the parish priest.
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.
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!
Your answer made me smile and brings me hope. Thanks.
I can totally relate to this answer! Watching our parents deteriorate daily is mourning before their actual death occurs. Thanks for sharing.
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!
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!
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.
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.
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.
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.
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.
Yes. Exactly, that lonely feeling of isolation.
* 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.
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.
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.
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.