How do you deal with life after caregiving?

Hello to all...... My Mother passed 1 year & 10 months ago and still this has been a deep transformation for me. Care taking is the most rewarding job one will ever be given, but at the same time it can bring you so close to losing yourself almost to the point of no re-turn. 1 year and 4 days after my moms 1st anniversary of her passing I experienced my 1 st of many panic attacks and they are now almost 1 year later slowing way down. ( greatfully) I really, on a daily basis have to remind myself that I matter, I deserve to get my life back to whatever level I want it at. I have had a few jobs since her passing, I even went into the field she was in for many years, always just searching and never found anything fullfilling, Until I decided to think of me and only me for the 1st time in my life. I started my own business, Home staging and design, I am only resonsible for me, That unto itself is the answer for me, it may sound selfish to some whom have never jumped full body, mind, spirit and soul into to caretaking for a loved one, but this is the key for me. I have a long way to go before I can say that I have "come along way baby" This can take years. It really is an "Inside job".....I hope everyone who has felt depressed, helpless, and sometimes useless and I know your there, you in time will find the key to your next step, you don't need to rush it, we love long and deep with our loved ones and losing ourselfs in another is a long, long journey back. You can rebuild "you", because "you" matter... just you! walk a little, read a little, sleep a little, we all lost alot of sleep over the years haven't we? But really take the time to get to know you again....Hope is a gift ...use it...

Wow. I just lost my mom a month ago (she was in an assisted living facility for nearly 6 years and I was POA and "The Responsible One" of 3 siblings) and I had no idea I would be so walloped by the loss. I thought a month was a long time... I see now that it could be much longer.

Thanks for the insight, all.

martha, I was not prepared for this either. And I did not see any support on this subject. Only support for the care giving years. I received awesome support on this site while I was taking care of Mom and dealing with my mother-in-law's illness. Priceless support and I made some wonderful friends. Hopefully this topic will help those of us going through the aftermath. I am so sorry for the loss of your mom. A month is a very short time. Hugs to you.

Martha...your last name is one to use in your daily healing. It's amazing what tools are available to us! Draw from this, it has alraedy been given to you! wink!!

I am 30 and took care of my mom for 10 years. With 3 kids and a husband life was very chaotic. Between doctors and nurses and therapist coming to the house every other day and school with the kids, Needless to say I was exhausted. When my mom almost died and the doctor's said she needed more than me but a nursing home, I was devestated.

It took a lot of tears and even more faith to get through. It is still hard to handle the holiday's this past 4th of July was my first one without my mom being in the house. I got through... the phone is a god send and I can still talk to her, just not give her the care she needs anymore.

puckmomma, you are a good daughter. You took care of your mom for a very long time in your young life. And the doctor knows what is best. Yes, thank God for the phone.

love,
miz

I just have to deal with all the guilt trip of her crying about the kids and not being able to come home. No matter how I tried to explain things to her she does not understand that I can not give her the care she needs anymore.

I talk to her at least 5 times a day and feel extremely lucky that I am able to talk on the phone as opposed to talking to her through a cloud...

Life is extremely precious and I am grateful to god for all that I have.

I am having the hardest time transitioning my life now that my mother is in a nursing home. Seeing her in the nursing home is hard. I get butterflies in my stomach everytime I go to see her even though I enjoy her company. My days are so hard without her around, plus I'm looking for a job, so it's doubly hard. How do you move forward with your life to get over the sense of loss and pain?

puckmomma, I sure do know how you feel. You have described some of my own feelings to a t. God bless you, fellow caregiver. It's very hard to move on with one's life when one loves a family member that one has cared for over a period of years. Yes, it is a losing of one's self definition, I guess.

Yes, but just think CaraMia that at least you get to see her. My whole world crashed ontop of me when my moms vital signs faded and was told she may not make it. I appreciate the fact that my mom is alive and I can talk to her and see her.

Just think it can always be worse.... thats how I get through it ( Every Trip).

Also it helps if when you can't take it emotionally you can always leave the room for 5 min. to pull yourself together. Then return like you just had to take a call or something.

Thank you, puckmomma. Last week when I visited one day, I just broke down crying telling her how much I miss her at home.

Thank you deedee and frequentfliertx for understanding the frustration....and I think I need to clarify...that my mother WAS abusive and negligent when I was a child...she has a personality disorder which was never diagnosed..in her time people had "quirks" not disorders...

In any case..after being placed on heavy meds she became more compliant and accepted care. She never would have survived in a nursing home for she had only abusive and mocking language for all the aids I have ever hired. She now has a live in....and I do not live with her but supervise all the goings on and do the cleaning and maintainece bill paying etc...at her house. My life is on hold till she meets her maker and it is very hard to give to someone who never loved.

I have detatched as best as I can from the facts and care for her as if she were a client and not my mom. It is easier that way...none the less...I have still to sacrifice my time energy and resources to make her life comfortable ...and know that there is no reward financial or otherwise....other than just doing the right thing. It's a good thing I raised myself to live without expectations...I seldom get disappointed...

Tilda -yes I had a abusive husband-the physical abuse had stopped but the verbal abuse continued up to a few days before he died when he was not responsive most of the time and he was only 71 when he died. I was able to leave hin for short periods of time and joined a volunteer group at our senior center so after he died I did have a support team. He did nothing for himself but downplayed what I did for him-he was disabled 16 yrs. and when I retired due to health issues he became very dependent on me and love to argue. When he died at first I was relieved and did feel guilty about that and had just decided to place him because his care was too much for me with his behaivor.

If you keep on crying and beating yourself up YOU will never be able to heal and move on.
I miss my mom too, and my whole world changed and I understand. A simple thing like moving the coffee pot into the kitchen was a big step for me.

Tilda, I feel just awful that you feel your life is on hold till your mother's passing. Things must not seem all that well for you. Listen, your situation is not the end of the world and If i would see you i would probably give you a hug. My moms attitude is not the best either, her language is just as bad as the Deadly Catch Captains. And her demands were even worse.

If your support team isn't helping you get through than look in the mirror after you had a bad expirence and say ITS JUST HER, NOT ME! I AM DOING NOTHING WRONG, I CAN AND WILL GET THROUGH THIS, I LOVE MYSELF.
As corny as it seems if no one else listens to you , You will listen to you.

I hope with all the faith that I have that you get through every day, one day at a time with courage.

There will be an end sadly, But you should not have to be on hold till that day happens.

It took me a very long time just to turn the night light off in Mom's bathroom...

Miz, I can totally relate to you. Although I've never been a depressed person in the past, caring for my husbands grandmother full time with no help for the last 3 years has certainly made me a depressed person. I feel exhausted and overwhelmed just about every waking moment. I can honestly say that lots of times I just want to crawl out of my skin because I really dislike how I feel. What I try to do to get out of my funks is to just say "ok, what is it that I am afraid of?" and I go out and just do it. If my girlfriends invite me for coffee but I really really don't feel like it and I don't feel like showering or getting ready or looking nice or wearing heels that is exactly what I do. Your motto for life needs to be, "just do it". Once you start to actually do those things you really don't want to you will see that you were glad you did them. Just take it one day at a time. Good luck.

It will be 9 1/2 years on the 18th of this month since I lost my mom. I had taken care of her off and on for several years starting when I was in college and then for the last 2 1/2 year of her life most of which she was totally bed bound. She would be 86 1/2 if she were still a life. I had to go back to work 6 weeks after she died and then my husband was laid off 2 weeks after that. He was also diagnosed with a benign tumor and had surgery by the end of that year. In some ways I was relieved, numb, and had other responsibilities to keep me busy, but I still allowed myself time to grieve and journal. But I would say about 8 months after she died was when I experienced a real hard time and it seemed the depression starting hitting more intensely and some anger, too. Unfortunately, many outside of my immediate circle thought I should be over it by now and were actually hurtful and rather invalidating.

I can stay 9 1/2 years later that much water has passed under the bridge (one of mom's favorite sayings) and that even though I go through some moments of sadness and tears or longing for her to still be apart of my life, I am alright and at peace. My mom, who was 24 when her mother died of cancer, used to tell me that time does make it seem less intense. I am not for sure if everyone experiences this because we all grieve differently, but I have found it to be the case for me.

Your loss is still very new. Be gentle with yourself and don't expect yourself to be over it yet - you never will be over it. Definitely try to live the phrase "take it one day at a time" or even one moment at a time as sometimes that is all you will be able to do. It will take time to get on with a "new" normal life for yourself, but you will always be aware of the loss of the most important woman in your life. Even today I am very aware that my mother is dead as well as my dad and 8 of my children. It is apart of who I am and I am aware of them in a different way than when they were alive. This awareness has been a comfort to me. I wish you peace and comfort, too.

Miz - you are right - there are lots of us out here, moving on as best we can after the demands of Caregiving. We gave the best we could at the time, and when you are exhausted, sleep deprived and emotionally drained your best may be less than you long for it to be - but it IS still your best, given the circumstances. Remember that. And after the need for that caring has passed, you need to allow yourself some of that love and care so that you can regenerate, grow from your insight and experience and move on forwards - there WILL be something there for you - be patient - and keep your eyes and your heart open! There may be a job, or new friends, beautiful flowers, a flying bird or occasional sunny days. See it - love it - hold it in your heart - share it. Be gentle with yourself. Moving forward takes time, and energy. Be your own best friend, love yourself and then others can love you too. x

My mother is in rather bad condition. My solution to the sadness is to join in with other people to go and do some fun life activites! This has been a life savor for me. I went to meetup.com and I plug in my city and any activites I enjoy or would like to try to do. Anything, there is a group of great people in your area doing it! I bicycle, kayak, take walks, dog people groups, eat out, do photography, go to free outdoor concerts with my group who now are my friends. And it does not cost. And amazingly to me, since they are mostly around my age, they have been or are going through caring for their ailing parents! This has been a life saver for me, to be with other people, not alone and have made wonderful friends!
Good luck!

Good for you, "picture"....glad that you found a lifesaver. Who takes care of your mother when you are out biking, etc.?
Just curious...

I am very lucky that she has the funds to be in an assisted living home. She is now in the memory ward. I had her with me before that and it was most difficult as she constantly was walking without her walker so the stress of constant attention was putting me into deep depression. I could not do enough for her care. She now has a "team" looking after her. I visit, closely monitor their care, very vigilant. We are working in a Montessori type activities with her, (went to Toys R Us to the learning section, wood block train, wood puzzles with animal sounds etc.) but here at this stage and age it is all regressive, never progressive. It took 4 homes over the past 2 years to get the right place. I have always had Home Health Care nurses that come out - they do physical therapy, X-rays right in your home or facility, nursing. Now Hospice is coming out helping. Not end of life, but for those who meet a certain criteria, unable to walk, need help toileting, washing, etc. They even brought in a small electric be to be lower so mom can't get up out of bed easily at night and if she does fall it is much closer to the ground. They brought in a wheelchair so I can cancel the rental we have. A nurse comes once a week for personal check ups, (already have 3 in the home facility) a volunteer comes out 1-2 times a week to work with her with the wooden learning child activities I bought for her to use, and to make sure she is eating and they help her do so if needed. This is all the stuff I do with her, but now others are involved so I am utterly grateful. I cannot give my life to my mom, this is her journey. I will also have mine when I am older. But I will make sure her care is the best we can provide and I am there for her, but I am learning to not ruin my own well being. My husband has bladder cancer so he is most important. But if I do not keep myself healthy mentally and physically, then I will fail myself and them.
We are now working with an Elder Lawyer to protect her assets and get her on medicaid. She need her assets to pay for what medicaid does not.
So when overwhelmed, as this is all continuing to eat up my life and ruin my business, I jump on my bike out on the trail and RIDE!

Dear Miz, I understand the struggle to start your own life again after caregiving. I just has to remove my father as my son's emergency contact for school since Dad has passed away. It hurt so much. I am concerned about your need for a job and had a suggestion. Would you consider working as a sitter for someone who is elderly or for a family who needs respite care? If not, would you consider working with children? You have so many skills that could help either group of people. You will be in my prayers. It's a tough road, isn't it? Rebecca

"Picture" : You seem like a great Caregiver. It's very unfortunate that your husband has bladder cancer.....whatever home therapy that entails. I assume he's not in the hospital. I like the fact that you know when your time comes, someone will be there for you.

Hi, I am in that "life after care giving" phase.I cared for my mother for 8 years. She passed on May 12th. The last month, actually the last two weeks were extremely rough. My husband and I went away for a while and just relaxed, walked, visited friends, and tried to rest up. I still have times where I feel very very sad but that is to be expected. I haven't finished clearing out my mom's room. That seems to be very hard for me but I can take my time. Now I have more time for my husband and for myself. That is the main thing right now. I plan to do some volunteering to meet new people and to get back into the social networking. Working with older needy people is not on my list right now. I do help feed the needy and am doing more at my church. Jumping into too many things would be too much after such an intense time care giving.

pltrickey,
I am sorry to hear of the loss of your mother. I still have a lot of things in my mom's "room," which is our guest room. It has been 9 1/2 years. I did clean out some things and gave some special items to her friends and family within the first year of her death, but for the most part cannot seem to depart with the rest just yet - though I am doing a really good spring cleaning of the house and have though about cleaning out a lot more. I will see how I feel once I get to that room.

My mom kept her father's Irish sweater for the rest of her life which was almost 40 years after he died. She had other keepsakes as well from him and her mother who had been deceased for over 50 years. She even kept their home place and would go mow the yard during the summer.

So definitely take your time and do things when you are ready and not when others are telling you to do them. Best to you.

Thank you for your advice ,Kitty. I was feeling guilty for not clearing stuff away. I still get weepy going into her room. My daughter is coming down in August and hopefully can help me take care of most of the things. You are right, parting with a loved ones treasures will be very hard. I made the area outside of her room a beautiful garden so it is a pleasant room. It would be good for a guest room. Thank you for the good advice.

I still have one of Mom's robes, unwashed.

I didn't lose my mom but when her health was failing the doctor told us that she may have to go to hospice. My sis and I were basically planning a funeral, I cried and cried, and my children who are 6 and4 and 12 didn't know how to help me. I had to be strong. So when her vitals did finally improve I was told I could not care for her anymore. That is equally heartbreaking, and life after caregiveing is very hard.

But It does need to get done. If you read any of my posts I always talk of my coffee pot. It was always in the dining room because that is where she would make coffee, she is wheelchair bound and our kitchen is very small. so when it was time to move on, my husband cleaned her corner about a month after she was in the hospital on recovery road. I cried and cried.
So I guess I'm saying I understand how everyone feels, You do unfortuantly need to clear that room out. It will help you heal, charity is great for those items that have no sentimental value and Keeping a couple of things is ok too. but after 9+years you owe it to yourself to move on and heal. She does'nt want to see you in pain of her death, she would want you to live but not forget her.

And when that room is clean I found painting or changing the wall paper helps too. My 12yr old has my moms room and that is a fitting tribute seeing as how they are so close. I said that change is hard, and keep tissues at hand but I have faith that you can clean it up and move on with love and not regret or remorse.
I wish the best for you and this site is here for you always, we all understand you are not alone.

puckmomma,
Thank you for your concern, but you may have not read my earlier posts to the original poster (who I am not) that I am well and living my life after all of these years. I do not have to clean out or part with anything that I do not want to or that I do not feel spiritually ready to let go off. It has nothing to do with healing or not healing. It is a memorial in its own right. It was a guest room before and it has been after. It is even my craft/overflow room, yet there are items in there that will always remind me of her and our precious time together. Many of the items charity would not accept - they are personal care items like the wool heel protectors she was wearing the last few weeks or her beautiful hair that I ask her to save for me when it fell out after her brain radiation treatments. She still had her long dark brown hair even into her 70's. I am not in any pain from her death. She would understand more than anyone about holding onto some things as I mentioned how she also held onto things from her parents for the rest of her life.

Just as when a mother loses a baby (before or after a birth), she should be the one who decides if and when to give or put the baby's things away or change the room, a caregiver has the right to determine when the time has come if it ever does to change.

I am sorry about your mom and what you have had to face. I wish you and your family the best.