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Changing gears
dutiful deb
Posted: Tuesday, September 11, 2018 12:13 PM
Joined: 1/1/2012
Posts: 1895

It's nearly the 4 month mark since my mom's passing. I'm still finding myself on the same schedule I had when she was alive, and I'm having a hard time breaking free of the old routine.

For example, my work schedule is late morning to early evening. When Mom was alive I'd get up at 6 a.m. and spend the morning on care-related activities, such as taking her to appointments, making calls regarding her care, visiting her at the MC facility, attending care conferences, doing paperwork, managing finances, etc.  I spent an hour or two, depending on what I needed to get done, on my own needs, such as homework (I'm taking online college courses to finish a degree program), preparing for my class at work (I work for an early childhood program), or doing housework. Most often I found myself short on time and something had to give, so it was usually housework and my own needs. Saturdays were usually spent doing my coursework.

Once every week or two, I spent the morning catching up on my own household needs, and what I was most often behind on was laundry. There were days when I was so behind I literally had nothing to wear, or there would be no clean towels. I would put a load into the washer, do chores or other duties while it was washing, and throw something on at the last minute. Many times I felt so rushed, or had a sense of not having finished what I needed to do that morning, whether it was for my mom or for my own needs, and I went to work feeling less than stellar. 

Now that I do not have all the responsibilities for mom's care, you'd think I had time to readjust my routine so that I no longer have those "half-prepared" feelings, but here I am, an hour before I need to be at work, in that same mode. I've always been an organized person, with a special knack for managing my time well, but that seems to have gone away. 

This is just one way I feel like I need to get back to myself, if that's even possible. I don't think I will ever be truly the person I was before caregiving, but I'd sure like the new me to learn how to get organized again.

Am I alone in this, or are there others out there with the same or similar issues? 


Posted: Tuesday, September 11, 2018 12:20 PM
Joined: 5/14/2018
Posts: 259

Hi Deb:

I lost my mom a little over 3 months ago.  I'm in touch with how you're feeling but I can't get out of my own way since she left us.  I'm clumsy and I've never been clumsy, I'm forgetful and scatterbrained.  I was never any of these things when mom was with us.  I'm no way near the same human I was when she was here. So you're stuck in a pattern and I'm becoming a disaster.  Aint life grand?  Ughhhh. Hang in there; I'll try to do the same.

-Kat xoxoxox

Posted: Tuesday, September 11, 2018 2:28 PM
Joined: 1/17/2016
Posts: 934

Deb and Kat, tomorrow will be 4 months for me too.  Normally, I can juggle many projects at once and can handle everything that comes at me.  Now, not so much.  I feel frozen and my decision making skills are zilch.  I was in overdrive for months and I think my mind and body decided it's time to grieve.  I'm not sure what I am suppose to do, but I've set up some self care and counseling.  Not sure if it will help, but as mom used to say, it can't hurt :--).

People think it's easy once our LO has passed since we aren't involved with the care, the finances, etc., but it's these new responsibilities and beginning a new life pattern that is difficult.  We will all get through this and perhaps when we see how each of us is handling it, it can help us move forward.

Posted: Tuesday, September 11, 2018 2:41 PM
Joined: 11/9/2017
Posts: 305

Yes, yes and yes to all three of you. And to really encourage everyone, I'm a little over the one year and four month mark. But my case was a little...different.

Anyway. I am convinced and have read that family caregivers suffer from PTSD, as well as depression.

For those of you with insurance or means, and who are not adverse to medication, there is medication specifically for PTSD which is different from antidepressants. I have not tried it, but heard from someone who has. She said it stopped her nightmares completely.

I think we all suffer from a bit of ADD too. Because caring for someone with dementia is...scattering.

I had to laugh, sort of, at Deb saying she arrived at work "less than stellar." I crawl into work some days, especially in the beginning.

I don't have any solutions, but I do know that I am a changed person. I will never go back to the person I was.

 You can never go home.

Posted: Tuesday, September 11, 2018 5:38 PM
Joined: 5/21/2016
Posts: 2007

Hi, dutiful deb, I feel compelled to respond, almost at three months here for one, almost at two years for the other.  Something I found helpful for me when I was a caregiver was a strategy of “diving into the past.” Strangely, or maybe not, I still find it helpful to set aside some time to reflect, to intentionally “dive into the past” in order to restore my sense that what I did to confirm and confer my parents’ dignity and respect as they declined and died, was supremely worthwhile.
Posted: Tuesday, September 11, 2018 5:55 PM
Joined: 7/9/2018
Posts: 2

Hi, all! It's been 3.5 months for me since my mom died at 96 years old; she had lived with me for 5 years. So glad to read these posts, as this is one of the main topics of my life -- the transition. No longer in the old life caring for mom. Not yet in the new life, whatever that may be....

I did feel a difference after 3 months, my days were not so dominated by ghosts of physical caregiving and routines past. And then, the grief of losing mom intensified at the same time, like there was now more room for more grief in my psyche!

I accept in theory that this is a normal, human healing thing -- all this grief, including grief for old familiar habits and routines, and even for the passing of time as I, too, get older. I have many friends who get this and I read as many books as I can to reinforce this, since I know how healing it is to make space for feelings and natural process rather than trying to stuff them....

And then that creates more grief! Grieving my younger self, who did not respect how hard this would be, is, to go through something like this....

I really do see and feel how much I grew from caring for my mom. I've never been a nurse/caregiver kind of person at all, never as patient as I would like with long-term physical debilitation and aging (embarrassed to admit but true). But my love for my mother was of sufficient breadth and depth that it drew me into the project. I did my best to give her the at-home quality of life she wanted while she was alive. It became more natural for me to be caring and patient, and I'm grateful for that, I like being more that way, it makes my life better.

I'm still struggling with how hard and how painful it was, for her and for me, especially the last year of her life. I'm still challenged to accept and integrate that. My health suffered a lot in that last year, when she was so dependent on me for everything. And it was sooo difficult to watch her mentally and physical decline SO MUCH in the last year, when she had been so active all her life, and even when she first moved in with me. The grief of that was like a daily knife in my heart, and I spent time each evening journaling and praying about it, sharing on a caretaker group as often as I could.

I don't do this on purpose, but something in my psyche finds it hard to accept that terrible fact -- that old old age and life itself can be so ugly and very hard -- and yet it can still be possible to open to new hope. Unless I gently choose otherwise, my brain keeps seeing my future at 62 years old as all bleak, downhill, devoid of pleasure or opportunity. My mind and heart seems filled with tragedy, heartbreak.

Thank God I've seen SOME progress on this in the last month..... Progress not perfection, that's what I keep reminding myself, that's all that's required. (And even progress never need be perfect!)

Being kind and gentle to myself is utterly key. Just letting those tiny rays of hope, of lightness in a little bit at a time, they do add up as the days go by. Also part of the normal process.

Thanks so much for being here all!


Posted: Tuesday, September 11, 2018 7:23 PM
Joined: 11/27/2017
Posts: 49

Hi Deb,

Nope your not alone.  I’m still working to adjust my routine and re organize.  I think because we had to be front and center, we managed and got by and handled it.  I’m still trying to find my way.  Who knows maybe I’m going the wrong way, but question am I going the wrong way or am I going in a new direction?

Kat, I went thru much of same.  I forced myself to take small steps and tried to build on that.

Try not to be too hard on yourself, slow and steady.  

I started bereavement groups around 4 mos, due to the holidays which helps.  

Posted: Tuesday, September 11, 2018 10:17 PM
Joined: 5/2/2014
Posts: 761

Deb, you are not alone...

It will be 3 years next month for me and I am still not back to normal. I became a night owl taking care of my mom and I still cannot go to bed before midnight or 1 am. I still sleep with one ear open, waking to every sound I hear. I too was very organized and could multi-task very well before care giving 24/7 for my mom. Now, not so much. Things are getting a little better but it sure seems like such a slow process. I know I will never be the same person I was before caring for my mom but I am okay with that as I do not regret putting my life on hold to take care of her. I keep reminding myself, just take it one day at a time like we do with this disease. I learned not to sweat the small stuff and realize if the house doesn't get cleaned or a project doesn't get completed today, then oh well, tomorrow is a new day. 

Hang in there and give yourself time to adjust and heal. 

Hugs to everyone

Posted: Wednesday, September 12, 2018 2:46 PM
Joined: 6/11/2017
Posts: 27

It has been 7 months since Mom passed at 79 from dementia. Every time I think I'm coming out of the fog, there it is again. It can be as simple as a song on the radio or as difficult as spending time with my dad, who is in an assisted living facility with dementia, asking me over and over "what happened to your mother?"

My most recent struggle was Sunday when I went to the ER with stroke-like symptoms. It was on the 7 month anniversary of Mom's passing. She had her first stroke in her mid-60s. As I laid there it hit me that I'm 61. All I could think was "Please God, don't lead me down the same path." It was not a stroke but I now have a foot that drags, a cane (hopefully temporary), months of PT and no real answers.

I knew I needed to take better care of myself as my parents deteriorated but I didn't listen when my doctor told me. After all, I exercise.....kind of. I eat right.....sometimes. I don't drink....that much. My goal is to make positive changes in my life involving my health so I will be around to enjoy my life again. I'm sure it's what my mom would want me to do.

Posted: Thursday, September 13, 2018 6:45 AM
Joined: 5/21/2016
Posts: 2007

Let me just comment on PTSD and also therapists. I agree that many of the symptoms after the death of someone close resemble those of PTSD. However, I don't think these are things that can be dealt with through therapy. Therapy has as its premise that something is wrong with the psychology of the person who is in therapy. I don't see anything wrong with me, just with the society that doesn't have caring care systems, or at least didn't towards my elderly parents. I see something very wrong with the bloated healthcare system that is ravaging the savings of anyone with a long term illness such as this. I see wrong in the dearth of support systems in our society for persons who are compelled to take the best care they can of their loved ones. It's not something that can be solved with "reframing," or "behavior modification" or any medicine. It's a societal problem of dimensions that we don't even truly have an inkling of yet, until it is our generation who is entering stages of memory loss and need for care.
dutiful deb
Posted: Sunday, September 16, 2018 12:04 PM
Joined: 1/1/2012
Posts: 1895

Thank you all for this wonderful conversation! I am overwhelmed by the positive support and can relate to much of what was said. 

I don't know if this qualifies as a sign of PTSD, but I do have triggers that can set me on edge big time. For example, my mom hummed for about three years, constantly, during the middle stages. It was this repetitive, nameless tune that played like a loop. "Hm-hm-hm-hm....Hm-hm-hm-hm," over and over, on and on. I don't know how she kept it up. Eventually she stopped, but would pick it up again from time to time in the later stages. The tune sounded like she was humming up and down the music scale, although she was never musically talented. I know it was a form of self-comfort, and many dementia patients hum or perform some other repetitive act at some point in the journey.

To this day I can't stand humming or repetitive noises. I work at a childcare facility, and one of the women who rocks babies in our nursery sings this made-up little ditty that consists of "luh--laaahhh-byyy, luuhh-luhhh--luhh--luh--byyy" over and over and over in a soft but nasally kind of tone. Sure, the babies are soothed by it, but I want to crawl out of my skin and scream, "For the love of my sanity, sing something recognizable!" Of course, I know that would be irrational and unprofessional, so I just grit my teeth and bear it Nobody else is bothered by it, so I know it's just something that annoys me. My husband, too, has this habit of hum-mumbling songs that he can't remember the words to, so he makes up his own or fills in words with nonsensical syllables.  I have tried telling him that my mom's habit of repetitive humming has had an adverse affect on me, and he'll remember for a while, but of course he forgets, and the next day will take up the habit again. 

Posted: Sunday, September 16, 2018 1:25 PM
Joined: 5/21/2016
Posts: 2007

Oh, dear! I'm one of those people who hums, so perhaps it's good we don't work together! Though I do enjoy your writing. I always enjoyed when people would hum under their breath, because I would think, "they enjoy what they do." For example, my favorite dental hygienist hums when she is cleaning my teeth. We are on a hugging basis. I feel she enjoys what she does. However, I suspect that humming for you was always coupled with something stressful, so it's natural that it would have that unpleasant association for you, and also it's terrible that your husband can't exercise the restraint to be considerate of you and your need to not hear humming around you. I promise I will not hum if I'm ever around you in person! Maybe you can wear ear plugs or noise canceling headphones around your annoying co-worker, or maybe you can try describing to her, in confidence, why the humming bothers you. Sometimes I am surprised at how considerate people can be if they understand the reason behind a request.
Posted: Wednesday, September 19, 2018 9:57 AM
Joined: 1/8/2016
Posts: 365

Well let me add my two cents.....yes to all of the above. It's been 8 months & I have days where I'm out of sorts. That list I thought I could tackle in my home from years of neglect is still there.That diet & exercise I was going to do hasn't happened. Sleeping well hasn't happened.

I always had my cell phone on and in my pocket at work and I still do. I can't let it go. I wake up multiple times at night & check the time. I still feel like I'm suppose to be doing something for her.

I guess because we have been doing this for so many years it's a routine that won't be easy to break. And, yes other people think it's so easy because you have time now. It's not to say I'm not trying, but it will just take more time to adjust.

And, losing your parent is so significant. My FIL just passed a week ago and we were at the wake on Monday. Needless to say all of last week I had a headache that wouldn't go away. And, watching my in-laws these past couple of days being in a daze through me back to when my mom passed. He didn't have AD, but had been ill for the last 5 months.

So, we continue to be in the same boat. Well, at least we aren't alone..........


dutiful deb
Posted: Monday, September 24, 2018 10:14 AM
Joined: 1/1/2012
Posts: 1895

Wendy, I'm sorry to hear about your father-in-law. It's amazing what can push us back to those days of caregiving and grief over the loved ones we cared for through years of dementia. My MIL is displaying significant signs of dementia, and the whole family is either in denial or think she is not as advanced as she really is. My husband has been experiencing a decline in his health, along with cognition and mood changes, which also clearly resemble my mom's early dementia signs. I often feel like I'm back in a caregiving role, and I guess in some ways, I am. 

I completely understand the phone issue! I find myself turning down the volume on my phone, or even turning it off, for the first time in years.  Just last week I changed the ring tone; it had been a distinct sound that I could hear a mile off, but now I no longer need it.  I had to move away from going into the  "Mom needs me" mode associated with that sound.  There was an e-mail I used to communicate with Mom's doctors and check test results when I wasn't home, and for a long time I held on to it even though it was taking up memory space. I finally deleted that app, too, and found the letting go to be both sad and liberating. Now, of course, with my MIL and husband having their own difficulties, I still keep it charged and at hand, but don't have to depend on it so much like I did with Mom. 

Prayers for us all! 


Posted: Monday, September 24, 2018 8:44 PM
Joined: 11/9/2017
Posts: 305

Hi Wendy,

Yes, those things we were going to do once we "had the time"--I haven't even fully unpacked from a move I made after my mom passed. The energy just isn't there for me. 

I feel like a changed person; priorities are different and so much just doesn't matter to me any more. I even have a hard time wearing my own clothes! Bright colors and floral prints (I know-but I live in Florida!) are just so wrong now. Depression? Or a seriousness I didn't have to have before. 

Posted: Tuesday, September 25, 2018 7:21 AM
Joined: 5/14/2018
Posts: 259

Wendy I'm so sorry about your FIL. You've been  through so much my friend.  I'm thinking of you and sending you lots of love and a huge hug. xoxoxoxo

dolor I totally understand where you're coming from. I have lost my desire to do anything I once thought was important. I find myself wanting to stay home most of the time. My friends want me to go out with them all the time and I usually consider it but inevitably end up turning them down. I use to be the life of the party, the one everyone wanted to hang with but all that has changed.  I know it's only been three and a half months but will I ever get back to the old me?  I wonder if this is the new me now. Sigh.

-Kat xoxoxoxox

Posted: Tuesday, September 25, 2018 6:34 PM
Joined: 11/9/2017
Posts: 305

Skittles, I stay home as much as possible. I live in a huge, rude and cramped city and going out means dealing with the hurried and the hostile. I am close to a beach but going there means harrassment from the homeless and the drunk. I think if I were in a nicer environment I would feel better, but I can't get there from here.

I've certainly lost a lot of my patience with people. I haven't had energy to see my friends. 

While I have regained some of my sense of humor (I know, you wouldn't know it from my posts here!) I know the "old me" is gone. Bit by bit, parts of me did with those I love.  

Jules, how is your foot and your physical therapy going? I hope it is helping! And how is your dad? That you are managing the "double whammy" is phenomenal. That should give you a sense of strength and pride. It is more than I could do.  

Posted: Saturday, September 29, 2018 8:23 AM
Joined: 5/21/2016
Posts: 2007

Like some of you here, I have also found more peace staying in, enjoying the lack of stress, time with the dog, puttering about the house. Since I work during the week, it is a huge relief to just be able to focus on work for a change. I've been pouring myself into work. Like Tink, the night sounds are something that I learned over the years to be extremely sensitive to, though the baby monitor amplified the sounds and I have since turned that off. I used to strain to listen for the even breathing, or snoring in the next room. Now in the night, even the clicking of the old fashioned watch my dad used to wear, that I still wear from time to time, will wake me up. I have to put the watch in a solid thick walled drawer so that slight sound doesn't awaken me. Quiet. I like the quiet.