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Info Seeker
Posts: 1
Registered: ‎12-28-2016

Re: New here and facing the end

Message 1 of 10 (740 Views)
I too am a caregiver to an elderly sick parent just finish losing my dadd in Jan 2017.
Just breathe take a second and breathe God will get you thru this
God bless you with two beautiful children
Take care big hug
Frequent Social Butterfly
Posts: 196
Registered: ‎05-04-2011

Re: New here and facing the end

Message 2 of 10 (920 Views)

Iris59801 wrote:

Update: my mother passed away on the evening of 3/5 (her legal time of death was 3/6 because they couldn't get a doctor to pronounce her dead until around midnight). The service was on 3/13 and I am back at work for about 10 days until I have my baby. I was not there when she passed. She kept declining and declining but hung on for so long. Her hospice team said to look for when she started refusing food and drink and periodically she would but then she would go back to eating and drinking. I went to see her at the nursing home the day she died because hospice called to ask to start her on Lasix. She was very drowsy and pale. I kissed her on the forehead and told her I loved her. She woke briefly and mumbled something to me. I had a bad cold so did not stay long. She ate dinner that night and then died a few hours later. I know she wanted me to be there and I wanted that too and it has been so hard that I wasn't. If I'd known, of course, I would have remained. We had a nice service for her and I did the eulogy. It is of course also a relief that I do not have to face laying in a hospital bed after a C section while my mother is dying. But the loss is so acute. A friend texted me that when she lost her mother she never felt more alone on this earth. That seems about right. Thanks for giving me a space to say this.


Iris, I'm so glad you let us know. I was wondering what was going on. I agree with what Mimi said. Your heart is going to be wide open, with the loss of your mother and arrival of you newest. I wish you could take a few days off before your due date just to give you a little bit of time to BREATHE. But as you've noted, you have chosen this work and it doesn't give you much of a break.

 

Losing your mom is BIG. Please give yourself lots of permission to feel the feelings.

 

All the best,

 

Jane

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Registered: ‎10-15-2013

Re: New here and facing the end

Message 3 of 10 (923 Views)

To Iris ~  Your story of grief and loss is one that touches many of us and takes us back to the moments we were feeling much as you do now.  You have our sympathies on your loss and our admiration for the courage you showed in sharing your heartwrenching experience.  No matter how much support we have, this is a walk that we must take individually when the time comes to say goodbye.  When we are ready, grief support and counseling are excellent ways to reconcile all of the disparate emotions we are carrying inside.

 

For now, be good to yourself and your little family and accept without guilt the joy that they bring.  Look forward to the arrival of your new little one and be present in every moment!  Get your rest, relax and allow your weary self to heal.

 

Your mom is arguably in the best possible place she could ever be, unshackled from her pain and able to understand the extent of the love and sacrifice you so willingly gave.  Focus on that when your mind begins to wander to the "what ifs" and the "whys."  As trite as this sounds, it's the circle of life that no one can escape and it's all a part of a grand plan that we simply have no means to understand.  Wishing you grace and peace.  ~  Mimi

 

 

"Never succumb to the temptation of bitterness." ~ Rev. Martin Luther King, Jr.

Community Manager
Posts: 1,390
Registered: ‎10-09-2007

Re: New here and facing the end

Message 4 of 10 (927 Views)

@Iris59801  Thank you for updating us and we are sorry for your loss.  There is also an area for Grief and Loss that may be helpful for you to share this in - http://community.aarp.org/t5/Grief-Loss/bd-p/GriefLoss

AARPTeri
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Conversationalist
Posts: 5
Registered: ‎02-24-2017

Re: New here and facing the end

Message 5 of 10 (938 Views)

Update: my mother passed away on the evening of 3/5 (her legal time of death was 3/6 because they couldn't get a doctor to pronounce her dead until around midnight). The service was on 3/13 and I am back at work for about 10 days until I have my baby. I was not there when she passed. She kept declining and declining but hung on for so long. Her hospice team said to look for when she started refusing food and drink and periodically she would but then she would go back to eating and drinking. I went to see her at the nursing home the day she died because hospice called to ask to start her on Lasix. She was very drowsy and pale. I kissed her on the forehead and told her I loved her. She woke briefly and mumbled something to me. I had a bad cold so did not stay long. She ate dinner that night and then died a few hours later. I know she wanted me to be there and I wanted that too and it has been so hard that I wasn't. If I'd known, of course, I would have remained. We had a nice service for her and I did the eulogy. It is of course also a relief that I do not have to face laying in a hospital bed after a C section while my mother is dying. But the loss is so acute. A friend texted me that when she lost her mother she never felt more alone on this earth. That seems about right. Thanks for giving me a space to say this.

Conversationalist
Posts: 5
Registered: ‎02-24-2017

Re: New here and facing the end

Message 6 of 10 (1,052 Views)

Thank you. All fine ideas. And believe me, I am aware that my children need me. I probably will start taking some more time off in order to get though this time but I have some limitations. My sick leave is in the single digits as it is and for the FMLA claim related to my mother and I'll use it all but I also have to exhaust annual leave under that claim. I only have about 35 hours of that. Then I have maternity leave coming in under 4 weeks. I only have to exhaust sick for that FMLA claim. I do want to take time time off but would like to keep a small buffer when I return from maternity leave in order to deal with doctor's appointments and illness, etc. This time last year either my daughter or myself was endlessly sick for about 3 months and while I was able to negotiate some flexible work arrangements I was so ill that I really couldn't have gotten through it if I hadn't have had some leave in order to rest. A long way of saying that not exhausting all leave is part of my self preservation strategy. I'd love to work part time but as an upper level manager, that's not an option. I used to be a trial attorney and compared to that, even on a part time basis, this is a much easier schedule and pace to manage. This is a rough patch but it cannot last forever.

Conversationalist
Posts: 5
Registered: ‎02-24-2017

Re: New here and facing the end

Message 7 of 10 (1,055 Views)

Thank you for your kind words. Mom is thin on friends but we do have some family here who visit regularly and who have helped me with her when I needed it. Plus Mom has a lovely hospice volunteer who spends a few hours a week with her, I have hired Home Instead to come for 2 hours a day around dinnertime to help with feeding her, she currently gets daily hospice RN or social worker visits plus thrice weekly hospice CNA visits, and the nursing home staff checks on her frequently. My own caretaking role is more seeing to her finances, making medical decisions, and making sure she gets what she needs at the nursing home but I am satisfied that she is getting cared for so when I see her it is simply a visit. My visits are short but frequent in order to balance my other obligations. I generally have some time at the end of the day to decompress after our daughter goes to bed. It's just not what it once was at this advanced stage of pregnancy. I'll get through it. Thanks again.

Frequent Social Butterfly
Posts: 196
Registered: ‎05-04-2011

Re: New here and facing the end

Message 8 of 10 (1,087 Views)

Hi Iris,

 

I'm so glad you wrote this. Misery shared is misery halved. Or at least it feels like it momentarily. The sandwich generation is the squoooooshed feeling you get when all of it comes crashing down.

 

Let me suggest a radical idea. Consider taking a break from 5 day a week work. Where is it written... Either take leave for one friday off a week, or even a wednesday, until its gone and then apply for FMLA leave, until mama is gone and/or your baby/ toddler routine has calmed down. (Beats me when that is. I had 2 babies 20 months apart, nursed the youngest 'til she was 4, pumped like a dairy cow i don't know how many times in my office...)   OR even more radical, negotiate your job down to 32 hours a week. Or 4 tens!  But make the job fit your life, not vice versa. Why the heck not. Seriously. Of course you need the money, but, guess what, your sanity your marriage and your CHILDREN need the best you that's possible. 

 

I work between 24 and 32 hours a week at a very stressful job. And the fact that i work parttime is awesomely awesome. We make it work. 

 

Flexible work options for you AND your husband may create the work life balance and quality family life that you need. 

 

Also, your mom is not long for this world. Be with her and with your feelings. Go to the bereavement group offered. And treat yourself to a weekly massage.

 

write more? all the best,

jane

Frequent Social Butterfly
Posts: 568
Registered: ‎12-31-2016

Re: New here and facing the end

Message 9 of 10 (1,115 Views)

Oh my gosh, our lives could be parallel.  I'm so sorry you are going through this.   Both my parents were diagnosed with different cancers 4 months after my son was born, and I was approaching 40 as well.  My mom survived but my dad didn't, and his struggle with cancer was a lot like what you describe with your mom.   It's monumentally difficult to be a caregiver to the two generations at once. 

 

Does she have any friends or other family who are local to the both of you?   My mom's church helped out tremendously with food, etc.   My mom, even with cancer, was my father's primary caregiver.   I would relieve her on weekends so she could get out of the house and have some peace and quiet on her own.  Is there someone who can take over some caregiving for you?   Even if it's something like every Saturday?  I realize she's in a nursing home, but whatever role you are taking, it would still be helpful to get a break on a regular basis.  

 

I found hospice to be a tremendous emotional support.   They had good resources for me, my first time going through this.  What to expect from caregiving, what to expect at end-of-life, what to expect in my own grief and healing process. 

 

Don't be afraid to reach out to friends.   They may not be able to provide care for your mom, but maybe they could babysit for a bit and let you get out, get your nails done, see a movie, or do something else that would feel restorative.  

 

Hang in there.   I hope you can have as peaceful a journey as possible from this point on.  

Conversationalist
Posts: 5
Registered: ‎02-24-2017

New here and facing the end

Message 10 of 10 (1,126 Views)

Hello everyone-

 

I am the only child of my 74-year-old mother who was diagnosed with stage III inflammatory breast cancer just over 2 years ago. She had just relocated to live near me. She also has bipoloar disorder and as soon as she moved here, prior to the cancer diagnosis, it became apparent that perhaps dementia might be making an appearance. She was terribly confused and perseverated about everything.

 

But then cancer came so we didn't get a chance to address that. She had a scorch-the-earth treatment: chemo, then double mastectomy, then radiation. Then more chemo and radiation. She was often uncooperative with treatment e.g. sometimes she would quit taking her chemo pills and would lie about it to me and the oncologist. I was pregnant with my first child when she was diagnosed and around the time I had the baby was when she had her mastectomy. I had a very colicky baby, a full time upper management job overseeing an office of about 25, and there was only so much I could do for Mom but I made sure she had groceries, went to oncology appointments, and tried to organize her medications. It put quite a strain on our relationship. The cancer never went away, rather, it eventually metastisized to her brain. One day in August following a 6-hour chemo infusion she fell in the middle of the night on her way to the bathroom. I found her and called paramedics. I was 6 weeks pregnant with my second child. From there it was a straight shot into stopping cancer treatment, enrolling in hospice, and entering a nursing home where she remains today. I moved her out of her apartment and took full control of her finances and healthcare decisions.

 

I thought getting her into a nursing home might offer at least respite from fighting with her about cancer treatment but it just came with new issues. She had a few episodes of what appeared to be terminal agitation but that were not. Still, they had me doing things like physically holding her down there in the understaffed nursing home so she wouldn't try to get up and walk and then fall until hospice could admit her and and stabilize the psych symptoms. She fell several times for a few months but eventually became too weak to get herself out of bed. Her decline has been a horror show at a glacial pace. Even her hospice team has remarked at how surprising it is that she lingers as long as she does in each state of decline.

 

So now here I am. Still with the job (and not very much leave), the toddler, and about 4 weeks from my due date with my second child. My mom has declined to the point that she could die at anytime but there is no way to know when she will die. She is unlikely to last longer then another month. She is now entirely in briefs. She is on a pureed diet but rarely eats or drinks. She is on oxygen. She can barely communicate. She rarely responds to questions. If she does speak it is almost impossible to understand her and she is so confused that will ask the same question several times in a row. My worst fear of her dying while I am having the baby inches closer to being realized with every passing day. I get by generally although there are plenty of regular tears. Then I have an awful day at work (not often, but I did have one this week), or something happens with my daughter (her daycare called about a month ago to say she was taken by ambulance to the ER following a seizure- apparently caused by a fever. She's ok now) or our pets (a few weeks ago I had to take our beloved family dog to be put down after 10 days of progressive illness) and I am undone. As I am right now. I go through the motions of my life like I am mired in mud. All I really want to do is lie down and watch bad TV for hours.

 

I have many blessings. I have a wonderful supportive husband who also has a demanding career and his family is often there for us in terms of childcare. I have a healthy toddler and my pregnancy has been going great despite being 40 this time around and despite some complications in my first preganancy. Most days, I really like my job although I'm in a bad patch with it right now. 

 

I know someone will suggest counseling and it's certainly something I would be open to if I could figure out a way to fit it in. I also did visit a counselor about 6 months ago and did not get a lot out of it. I'll probably look into grief counseling with hospice after Mom passes to the extent I can manage it with a breastfeeding newborn.

 

I mostly just need somewhere to say all this to people who probably don't have exactly these circumstances but who understand that having to be primarily responsible for a terminally ill loved one pretty much means you are experiencing a lot in tandem with them while you give up a considerable amount in your own life. Thanks for listening.