I’ve experienced being a caregiver from several different angles – professionally, I have been a RN for almost 25 years so some of it comes naturally and is comfortable – much easier to help those you don’t know well. We all have patients that have left their mark on us. It really wasn’t until my dad was diagnosed with pancreatic cancer did the caregiver role hit home – sadly and happily dad didn’t suffer for an extended period of time after his diagnosis – a little over 6 weeks. Our family has always been close and we pulled together and were able to care for dad at home just like he wanted. Despite my professional experience I wasn’t prepared for how painful that final moment/day would be until I experienced it – the stages of grief I learned about in nursing school came to life. It’s been almost 3 years and yes it does get easier, and better but it is always there.
My mom has always been pretty healthy except for a long time smoking habit – it’s all caught up with her in the past few years with circulation problems and now emphysema – she almost died in October but rallied like the scrappy gal that she is. My sibling lives very far away (Hawaii poor thing) and I know she feels rather helpless. Mom and I are so much like one another we tend to annoy each other when spending alot of time together. I am glad to be there for her but it doesn’t make it easy and it is difficult when you have to parent your parent.
In addition to mom’s illness, my ex husband and father of my teen/tween kids was diagnosed with a brain tumor in August – that one knocked me off my beam! My biggest fear/concern is how this will affect the kids – wanting to protect them from pain and knowing that no matter what I do I can’t shield them from it. Their Dad is coping as well as he can but has “chemo brain” and his ability to cope with and care for the kids is so limited. OK – enough of my stories -know that I will be checking this website on a regular basis and referring friend/family to it as well.
I know Dan is smiling down on you and all of us – you are such a great role model – thanks for all you continue to do on Dan’s behalf – I’ve been a Dan fan almost all my life (1st Dan concert – summer 1978) Always wanted to meet Dan and I would love to meet and talk to you. PS I loved your interview with Fred Milgore – I also loved the poem you posted by Mary Oliver. The line that struck me most was “it’s not the weight you carry but how you carry it” Thanks again – Truly grateful fan
Hello DLH friends! I’ve been “lurking” but not posting…healing, processing, coping. Hard to believe it’s been 3 months since I lost Mom. Seems so long ago and seems like yesterday. I know folks on here “get” that. I’ve been all over the stages of acceptance grid – It’s so hard to lose a parent – for me losing my Mom has been more powerful and earth shaking than I “thought” it would be. Deep down I do know that Mom was ready for her journey. I know she’s at home and at peace and eventually my heart will catch up with my head. A while back Jean said I would learn to make friends with the grief – it made sense then but makes even more sense with each passing day. I have Aunts and Uncles here, but the nucleus is gone and I’m still looking at that nest on the top branch with fear and caution. I have good days and bad days but I know that is life.
It’s funny how we make connections through cyberspace and FB! So many folks on these pages have been a source of encouragement and inspiration. Big shout out to Char – can’t wait to hug you in person come August – and Jean and Lynn and others I can’t even name. Mother’s Day was so hard – I dreaded it for a week – then it arrived – the kids and I had a GREAT day. My kids capacity for love and understanding never ceases to amaze me. My folks are buried at Crown Hill Cemetery – beautiful grounds – many famous people buried there – James Whitcomb Riley, President Benjamin Harrison – grave sites of Mariettas that came before me – it was a good day – and a hard day. Now I’m getting ready to turn 50! Funny how 20 years ago that sounded so “old” – Today it feels like “hey, I’ think I’m finally catching onto this whole thing.” The baton has been passed and I’m holding onto it with sweaty palms and apprehension but I’m going to run with it. Thanks everybody – for those new to caregiving know you are doing great. You just don’t know it yet. I have some friends here struggling with aging parents and long term care for their parents or lack thereof – As a nurse I feel so frustrated with the politics and business of medicine – too many folks are falling through the cracks – I don’t have the answers but want to be a part of the solution – not part of the problem.
Tonight I am going to go hear one of my favorite singer/songwriters perform – Carrie Newcomer. (Next to Dan she’s the cat’s meow!) Counting the days until Peoria – seriously – I never thought I’d be so excited to go to Peoria IL from Indiana but I guess I’m easier to please these days. Jean – know that everything you’ve written to us and for us for you are a continuing source of strength and inspiration – you and Char keep this thing going through thick and through thin and all I can say is “THANK YOU”. Doesn’t seem to be enough – but it’s what I’ve got today.
Hugs to all! Marietta
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Mari.
I can only say I can not imagine how difficult it is/was to lose your mother. You have shown us all that you have a truly unbelievable spirit. During the last months of your mom’s illness and your postings, we came to “know” each other, as you said in the cyberspace kind of way. I admire you for being able to be there for your mom, to understand, accept and help her on her journey, as some might have run from the responsibilities.
Your post is beautifully written and from the heart. You have a wonderful family, and when it is time for you to take the wheel, when you feel comfortable, your children will be to you, what you where to your mom, beautiful, loving,caring,and strong, until the end.
~Char
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Oh Char – that is so beautiful! And you are absolutely right. It’s my turn now to take the lead and coax “my little ducklings” out of bed – off to school, etc . . . It’s my job to guide them and pull them into line when they stray off course – I often tell them I love them more than anything in the world and it’s true. I also let them know that I am not supposed to be their friend – at least not yet – I am certain they will be angry with me and disagree with me and believe in their hearts that my sole purpose in life is to make them miserable . . . But they will also know deep in their hearts that they have me and my love UNCONDITIONALLY.
A friend of mine often reminds me “there is no easy button” – DRATS! And now I look up to the heavens and the skies – knowing my folks are up there looking down – their job here complete. . . . and their wish that I would have one or two just like me fulfilled. And I can picture their smiles . . . and know deep down, but it isn’t going to be easy, but it’s going to be OK. Hugs to all! Marietta
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Marietta,
No, “drats, there is no easy button” when it comes to raising childrean – or ducklings! I often say that no one ever promised us it would be easy – and easy it surely is not. I am very sorry for your loss of your mother. Be ever so thankful that you had her as your role model and your friend for so long. I lost my mother at 16 years of age, and now, as I struggle with my two girls (18 and 21), I realize that they are older than I would have been with my mother, and I often question if having my mother for a longer amount of time on this earth would have helped with my own mothering skills. I am thankful, however, that my relationship with my mother was a good one even if it did make her unexpected death all the harder with which to deal. You seem to have a beautiful, determined frame of mind and spirit, however, so I am sure that you will do more than fine and carry on the torch that your mother may have lit. You’re a nurse and able to focus your energy on helping others and that is one of the surest ways to heal – that and caregiving, and there are so very many ways in which we can be a caregiver! Beautiful, lazy flower-filled summer days to you and yours to aid with your healing. I have a tremendous feeling deep in my heart that you are going to carry that torch beautifully. You are half way there after all!
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Dear Cindy,
You have sent such sweet and sunny thoughts on their way to Mari, regarding the recent loss of her Mom. One can tell you are a loving and giving soul, who sadly lost her Mom at a very early age. My hopes for you are to have days filled with blossoming flowers and big hugs from your two daughters. Be well, and rest assured your mothering skills, if like your thoughts and comments on DLH are very much right on.
~Char
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Marietta, you’re doing great, your mother would be so proud. The fact that Mother’s Day turned out so well means that you’re not letting the grief control your life – you’re still open to what good may come. 50 is great; once you pass that half century mark you start to find your center, which is helpful when other things start falling apart (on and all around you). What’s that old saying? “If you can keep your head when all about you are losing theirs, you’ll end up with all the hats.” Right?
Jean
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Marietta, you and your sister are very brave and strong. I wish for you both all of the healing power the universe can give to you and your family. Your Mom is at peace. Our hearts are with you and your sister. With love, Melisa & Brother Dan
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Oh – thank you just doesn’t quite do it right now. So grateful to all those on this site for the love support and guidance that has been shared so freely with me.
Thank you again to everyone but most especially Jean who took a fantastic idea and turned it into a reality – and also to the angels that assist Jean at keeping this running – Char you are also my special angel. I hope I can be of help to you one day!
<3<3<3 Marietta
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Wow – I haven’t read this whole thread for a while – I really can’t remember when I posted my first comment but I believe it wasn’t too long after the website opened – or maybe not.
It’s Saturday evening – about 7 pm – Mom is hanging in there, but it’s clear it won’t be much longer until her spirit and soul leave her body. I know she is ready. She has a strong faith that has gotten her through more hard times than I probably know about.
My sister has boarded her first plane back to Indy – due to arrive around 8 am tomorrow morning. I talked to her on the phone several times today – she told me that she and Mom had talked about the chance that Trish wouldn’t make it back before she died and they both made their peace with that. That eases my mind alot – It would be egotistical to think “I can stave off her death until . . . fill in the blank”. Since I’m the one giving her medicines and I don’t want to “drug her up” to the point of oblivion unless there were a pain/anxiety/restlessness issue. It’s such a fine line. Thank God that her pain has been minimal and more from bad circulation in legs than the breathing issues. I’ve lost count at the # of Serenity prayers I’ve said today – I’m so very grateful for every minute I get to spend with her.
Hospice has provided several meds to provide comfort – I am going to trust that my instincts are good and I really don’t believe God would let me make a mistake like that – my goal is to make this as comfortable and worry free as possible. I told my sister that I really feel that Mom is hanging on until she arrives despite their talk/agreement. She/we come from stubborn German stock and likes to do things her way.
Last night Mom was in a “leave me alone, I need quiet” state of mind and I can respect that. She and I have also talked and I feel like I’ve said all I need to say. Several close family members came by today. Mom slept through the whole experience. Again I know a higher power is at work here – it allowed folks that wanted and needed to see her one last time to do that without irritating the hell out of Mom who doesn’t want to talk.
So, I am sad and I am tired but I’m otherwise a very lucky gal with so many blessings – too many to count. The nest in the branch above mine is being prepared for my sister and I – That branch doesn’t look as frightening today as it did yesterday. Now – I’m going to listen to a random mix of Dan songs and Carrie Newcomer songs on my laptop.
I love simple sayings that help me keep things in perspective – the one I thought of today is “pain is inevitable, misery is optional.” I feel at peace with this process and this experience. Too bad you can’t get frequent flyer miles for spiritual journeys! I’d be in Hawaii . . . :0) Thank you DLH angels.
XOXO Marietta H
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Marietta, know that my thoughts are prayers are with all of you during this difficult time. I will not pretend to know what you are feeling, but do know we are all here for you. And you are never, ever alone. I pray for peace, strength and comfort for you in the coming days. Love and blessings, Susan
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Thank you Susan – I truly do not feel alone. I am blessed with wonderful family and friends. As the Beatles would say “I get by with a little help from my friends . . . ” Thanks to everyone for helping me not lose heart – :0) <3<3<3
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Marietta, my prayers are with you and your family tonight.
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Marietta, my wish is that you, your mother, and your sister all find your way to peace. I know what you’re going through right now and it’s a huge responsibility, but it’s also the most loving thing you can do for your mother, to ease her pain. Just do your best, and do it with all your heart – that’s all any of us can do. ~ Jean
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Thank you Jean, Char and all who have supported me in this journey whose names I can’t remember but your messages and support have been invaluable.
My sister Trish arrived this afternoon – We are all together and Mom is peaceful and comfortable. I feel blessed and loved. I’ll keep you all posted. <3 <3 <3 Marietta
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Dear DLH Friends,
Marietta’s Mom passed earlier today. Both Mari and her sister, Trish where by her side.
My heartfelt condolences to the family. And to Mari, well done, rest now, she is at peace.
~Char
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Marietta, my condolences for your loss. It’s lovely that your mother waited for your sister and that she’s out of pain now. Yes, as Char said, well done, rest now. ~ Jean
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Thank you Jean – and I am getting some rest now. I am truly feeling blessed that the three of us were together when Mom left behind her worldly pain and troubles. I am comforted that she is in a far better place.
Love to all!
Marietta
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Marietta, I am so sorry for your loss. No one but you can truely understand what you are feeling losing your mother now, except you. We do know that it touches a person deep down inside. My prayers are with you and your sister as you transition to life without her. She was blessed to have you as a daughter. Joan
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Marietta: As others have said, I’m so sorry for your loss. I know it’s a painful time. I’m so glad your sister arrived to be there with you and your mom. If you feel overwhelmed, close your eyes and feel our virtual hug and support. Susan D.
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So sorry for your loss Marietta. May you find comfort in your memories and strength from your family and friends. Mary
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Marietta and family,
May the memories of your mom ease your pain and sorrow the next few days. Memories cannot be taken away from any of you. I pray for strength, comfort and a joy in coming together to celebrate your mother’s life. Love, peace and blessings! Susan
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Dear Marietta,
You have my deepest sympathy. I hope your sister is able to spend a bit more time with you these first few days after your mom’s passing. Jean has a special section in the left hand column on loss and grief, which you might find helpful. You are in my thoughts and prayers
Find peace in knowing that your mother is no longer suffering…
Much love,
Liv
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Just want to thank all of you from the bottom of my heart for the love and support you have given me over the past 13 months!!
It’s almost been two weeks since Mom died – and it’s getting easier to focus on the good memories and good life we had with Mom. Helping care for her and callng her everyday has been such a big part of my daily routine that today I got a little misty when while working I reached for my phone to call her. I KNOW in my heart that Mom is in a much better place, free of pain, shortness of breath and all the other challenges we humans face on this earth.
I had a good feeling that Mom would wait for my sister to arrive from Hawaii which she did. Trish and I have been busying ourselves with business matters etc – Mom was so well organized and her affairs were in order – another blessing she gave to us. We have her cottage cleaned out -some things will remain in storage for a bit.
Mom’s funeral/memorial service will be a week from today – March 12th – Here is a link to her obituary (most of which Mom wrote herself a few years back – my sister and I tweaked it ever so slightly).
I think I will feel a bit more “closure” once the memorial is done and her ashes are interred next to my Dad – some of them are going to Hawaii to play on the beach!
Thanks again to everyone – I will write some more later on a particular issue I had with the hospice service we used – NOW is not a good time for that. Thanks again all – and DON’T LOSE HEART.
<3<3<3 Marietta
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Mari,
Glad you are doing okay. Yes, you will have bittersweet moments but the beautiful memories you have of your mom will live on in your heart forever. Glad you sister was and is there to help you. Your Mom lives on in each one of you. Keep strong, let the tears flow when they will and keep smiling!! Keep us posted. Love, hugs and blessings! Susan
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Dear Mari,
We all look forward to hearing from you whenever possible. In the meantime, go easy on yourself during the grieving process,
the memorial service will bring some closure I am sure. You mentioned a link to your Mom’s obituary but did not include it,
I am sure it was beautifully written.
~Char
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Marietta it’s so beautiful that you and your sister were able to experience this together and support each other, and what a comfort it must have been for your mother, knowing her girls were there. It’s been a privlege to watch your family story unfold and to be able to provide some encouragement. Take good care of your heart and let the healing take it’s own time, you will eventually become friends with your grief. Jean
Sent from my iPhone.
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Hi Mari,
Thinking of you, Mom and Trish, and hoping you are all together today. You are doing a wonderful job in the caregiving of your Mom, I so admire you. My thoughts and prayers are with you all.
~Char
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Marietta, you are such a strong, smart, compassionate & beautiful person. You are going through one of the most difficult times of your life right now yet you are able to be composed and positive at the time when your mom needs you to be more than ever so she can leave this world in peace when she’s ready. Your dear mom, you and your sister will be in my thoughts and prayers. Thank you for sharing your mom with us and in the process you have been a wonderful example for me when I walk that journey someday with my mom as you have taught me a lot through your experience.
My heart is with you Marietta, Peace & Love, Karen
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Update to story(s) posted above:
Well, here goes. The last few days have been a whirlwind of changes and activity.
My Mom has not been feeling well for several months and her activity has gradually gone to almost nothing. From bed to TV room to bathroom etc. I couldn’t convince her to come to the family Thanksgiving dinner – I really was chalking up many of these problems to depression. She has been pale but I attributed that to her not getting out at all.
Well, she was doing a bit better and with much cajoling she did join the family get together on Christmas Eve. (She has always loved Christmas). Saturday after that she sounded great, then Sunday not so good but again, this is not unusual.
Monday, somehow my cell phone volume got turned way down and I had worked the weekend. I woke to two messages from Mom (she sounded God aweful) then from the retirement community staff. She called them – they called 911 and went over there until ambulance arrived. I finally get messages and fly to the ER in my little subcompact.
When I got there she was so sick. They were using what is called a “bipap” mask to assist her breathing – it really helps and is a good thing to have since she doesn’t ever want to be intubated (have a breathing tube). Also she was severely anemic – her hemoglobin was like 4.7 (should be at least 10 – 12 for a woman). No WONDER she was so pale. She has had GI bleed in the past (from ulcer) and that prob happened again.
Well she went to ICU – got a couple units of blood and “pinked up” like a newborn baby. Unfortunately the CT scan of her chest showed not only a pneumonia but also nodules that are likey tumors in both lungs which was new from her last chest xray. I can’t say I am surprised, but it still knocked us both off our beams. We went through a bad patch similar to this about 14 months ago and I am well aware that she doesn’t want any extraordinary measures taken. I not only fully support her decision but totally agree that it’s the right decision as well.
The docs said if she doesn’t want treatment, there wo uld be no benefit to put her through biopsies etc to figure out exactly what the nodules are. Today she is out of ICU and on the floor. She is much beter but so tired. I don’t know how much longer she will be in hospital but prob. can’t go back to living alone and independently. We are going to talk to hospice and the retirement community also offers higher levels of care, but Mom doesn’t want to talk about the next step.
I don’t want to push her too hard. I don’t want to make decisions FOR her when she can make them. Any suggestions on how to gently guide her?
I plan to take some FMLA now. Save the rest for later, whenever that comes to pass. My sister is going to come back from Hawaii for about a month. Maybe betweem the two of us and with the assistance of home health OR hospice we won’t have to put her in the “skilled” wing of extended care facility. I just don’t know what is realistic. I have a tendency to bite off more than I can chew sometimes. (who am I kidding – I bite off more than I can chew) I also want to take this opportunity to treasure every moment we have left together. I guess that is the silver lining to having a terminal diagnosis. The opportunity to say the things you want to say and show your love for that person.
All the folks here have been so helpful and I am grateful for that. Oh one more thing this most recent experience has taught me. Even as an experienced RN I’ve found it impossible to be objective about your own family. I’ve been looking back thinking I should have noticed the paleness getting worse, I should have . . . and I’m sure anyone here could fill in the blanks. It also doesn’t help that she goes from being “OK” to being on death’s doorstep very quickly. Hope everyone is doing well. Thanks for posting stories – they are so helpful.
Marietta
[img]threegenerations.jpg[/img]
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From L-R my daughter, Mom, me
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Marietta, such a sweet photo of three generations, thanks for posting it. It’s easy to see how close you all are. I think you’re probably too tired to make any decisions right now – it would be very easy to bite off more than you can chew, especially since you’re probably feeling extra protective of your mother while she’s so weak, and I have no doubt you’re beating yourself up over having your phone volume down, never mind not noticing the “signs”. Perhaps you could talk with your sister about what would be best, it always helps to have another person to bounce things off of. You could also talk to one of the hospital social workers or a hospice worker to find out how best to go about getting your mother involved in a discussion about what her wishes are if she’s no longer able to live alone. Your father died at home – did you have hospice help or did you care for him yourselves? After watching your father die six weeks after his diagnosis, she might be feeling like that’s what’s going to happen to her too, so it might be hard for her to get her mind focused on what happens next. She’s tired right now as well, she’s had a busy week. Just throwing stuff out there, I’m sure with your professional experience you know all of this, but the main thing is, we’re here, with you in spirit and pulling for you. ~ Jean
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Thank you once again Jean. Even though I “know” alot of this stuff in my professional life, it’s hard to apply it to your own. In this situation no one knows “when” her demise will happen. One of her nurses yesterday called her a “spitfire” and that is right on target. In her 30′s and 40′s she was 4’11″ – now she’s about 4’9″ but full of spirit, but that has been slowly draining. I have to remember to be the daughter and let the pro’s help us out. You’re right, we are both tired – her moreso than me. She’s living it. I’m looking forward (as much as one can) to talking with the hospice folks tomorrow (today now!) and also working with the “care manager”.
I also have my phone set to the loudest, most annoying ring tone I could find. I think it could wake the dead. LOL. I’ll keep in touch – thank you for this site Jean. Also a shout out to Char – we’re FB friends now too!
XXOO Marietta
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Hi Marietta,
Great picture of three generations. So sorry to hear about your mom. I think I told you my mom has several health issues also, one being she is severely anemic, and has blood transfusions about every 4-5 weeks, two units of blood per treatment. She also has decided, not to have further testing to find out where the bleed is. She too gets up from bed and then sits and watches TV all day now, so know where you are coming from.
Thoughts and prayers coming your way. FMLA is great, it will give you time to rest too, I myself was on FMLA this summer, as there are also health concerns with my husband. At least you don’t have to worry about being at work, when you mind and heart are elsewhere. Please stay in touch, glad to see you back home here at DLH.
~Char
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Marietta; bless your heart!! I am sending you a hug and bless your heart! Jean hit the important points; as always:) I also wanted to make sure you knew your Mom could still have hospice even if she decides to stay in the retirement home. Hospice does not usually require “skilled” care; not sure if it differs from state to state. Hopefully, you can remind your Mother whatever decision she makes is not permanent! If she/family feels later it isn’t ‘right’ or her status has changed, you should be under no obligation to a facility or a provider. So, lean on the social worker or ‘care manager’.
You made me smile regarding your comment you “found it impossible to be objective about your own family”! I do not believe years of professional experience EVER make a difference! When it is someone we love, our heart always wants to “take over”, doesn’t it. I have had situations slap me in the face, and I STILL do not see it:) Your heart is where it needs to be; please do not beat yourself up! “Should have’s” will drive you crazy if you allow them!
Take care and know we are here for you!
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Lynn – thanks as always – Hospice is in place, Mom is doing much better physically and emotionally, and my sister is here from Hawaii to help out. Overall, I am blessed to have such an awesome family and a site with others who understand as well. I’ve let go of the shoulda coulda woulda’s – More from me later.
Marietta
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Hi Marietta;
I am sorry for all you and your family are going though. Jean has some fantastic recommendations; I second all of them:) It sounds as though you are your family’s main anchor, which, in turn, makes your emotional health even more important. I have had many physicians and nurse “clients” after THEY become the patient or caregiver. They always seem to have difficulty compartmentalizing their “healing” focus so they may instead focus on their own, and their loved-one’s emotions. I hope you are able to be the “daughter”, “mother”, and “ex-wife” and allow yourself time to renew and center.
Jean had a GREAT suggestion to have regular “meetings” with your children to talk about their Father’s changes and how they are coping. I would start it off by you sharing your sadness, depression, and helplessness. While you want to be strong and protect them, they need to hear you say how you are feeling. They already KNOW it, regardless of what you say or try to hide. The coming months for your children will be a life-altering event; however, it can also strengthen your relationship with them.
If your relationship with your Ex is amicable, I would suggest joining in and facilitating “talking times” for your Ex and the children. Alternatively, if you are uncomfortable, find out if your Ex has a Social Worker on his team who could help. For your children to be able to move through this transition and be as healthy as possible, communication is the key. I do not know your Ex’s prognosis, but it is important for your children to leave nothing unsaid in regards to their Father (depending on their emotional ages). It may be painful at times, but I believe you all will be more healthy if you are able to ‘process’ everything.
Good luck, and remember: TAKE CARE OF YOURSELF!!!
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Thanks Lynn – thank you so much for your kind comments – Jean really is right on target with her suggestion. Thankfully Andy and I are on good terms. That came with time and patience as when we first split up 8 years ago it wasn’t very nice at all. I talked with him last night before work about talking to the kids on a regular basis and he agreed. He and his girlfriend attend support group meetings and I encouraged him to talk to others in his situation about how they talk to their kids.
You are so right about the kids “knowing” how we feel even when we try to hide it. I talked to them recently about knowing how I felt when my Dad got sick. Trying to give them permission to feel what they are feeling. Being an adolescent is hard enough these days. My goal is for them to get through this as well as they can and feel loved and supported by everyone around them.
Keep the pointers coming and I’ll let you all know how the scrap book project is going. Been working all night tonight. Home soon to get some rest and working on gathering pictures.
Thanks again.
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Jean – My how time flies. I sadly missed the memorial weekend for Dan in August. I live in Indiana so I wasn’t too far away, but couldn’t arrange the time away from work. Life continues to march on. My ex-husband continues to survive with his glioblastoma. The difficult part is learning to know the “New Andy”. His physical appearance is different and at first glance his personality appears to be the same. The reality is that his short term memory is terrible – he gets irritated/angry much more easily than before. Loud noises bother him. He sleeps more than he ever has in his life but can’t get up to wake the kids or help them get ready for school on the days they stay at his house.
My mom with emphysema is still with is. Sold the house she’d lived in for over 40 years after 2 years on the market – now lives independently at a extended care facility. The problem is she is no longer living, but existing and nothing I do seems to help. She sits in her “den” and watches TV all day, won’t even go out to her porch, won’t try to meet her neighbors or participate in any activities the facility has to offer.
A couple of weeks ago, I talked to the folks at the facility and arranged to start her in physical therapy – she absolutely refused to go. Last week when I was there, I picked up her mail and met three of her neighbors in about 15 minutes. They are sweet women who all asked about my mom. I expressed all these things to her and she replied “doesn’t it matter to you that I am happy doing what I’m doing?”
All of these things are causing me to feel very sad – depressed – helpless. I guess I just needed to vent. I wish I could have met you in August. Maybe there will be other opportunites in the future. I’ve had my share of counseling and therapy over the years. I my brain I know I need to get off my pity pot and get busy doing something for somebody else who is surely in more dire straits than myself. Folks always used to say it’s OK to sit on the pity pot for a little bit, but you have to know when to get up and flush. LOL.
Thanks for all you do in Dan’s memory and for cancer research. I just need to get past this feeling of waiting for the other shoe to drop and enjoy the present. Thanks Jean.
Marietta
PS I “MO’d” my picture on facebook. :0)
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Marietta, it’s good to hear from you again. The fact that you are on the pity pot at all says to me that you aren’t focusing on YOUR life enough, because really, when you look at YOUR life, it’s pretty good, right? You have a job you like (hell, girl, you have a JOB!), you’re healthy, you have two boys you love, you have a family you are on good terms with, you are a good, caring person, so I’m assuming you have good friends – you are lucky! You’re a compassionate person and you’re letting yourself get sucked into the situations your ex-husband and your mother are in and it’s depressing you. Are you getting enough rest, enough exercise? I know you know how important your physical health is when you’re dealing with stress. You care for others for your living, you care for your boys, your mother, your ex, run run run, care care care…when was the last time you took some time to care for Marietta? Who is she now, anyway? What are her hopes and dreams? I think you should set aside some time on a regular basis to get centered within yourself, to remember that the life (you share with your boys) is YOUR life. Your mother’s life is HER life. Your ex’s life is HIS life. The three of you are trains on your own tracks. But if you spend all of your time running back and forth from her track to his, carrying your cargo of grief and worry and pushing them along emotionally, eventually you’re going to get stuck in the gravel in the middle.
I don’t know enough about the situation with your husband to say much, but I hope you and the boys sit down from time to time to discuss their feelings as they watch their father going through these changes. Boys hold so much in, but regular “meetings” to discuss Dad might help, and it might help you as well.
As far as your mother goes, I don’t know her and what she was like in the past, but I think you should let her “do her thing”. You’re trying to make her do the things that would make YOU happy. You’re rushing about in your busy life, and the thought of her sitting alone in her room all day makes you feel sad, and probably guilty (don’t get me started on guilt!). If she says she’s happy living this way, you should be glad she’s happy, and stop trying to make her conform to your idea of happiness. The stories that make me so sad are the ones where a loved one is begging to be taken back home. If she wants company it’s right outside her door, and maybe in her own time she’ll make that decision for herself.
I know you want (need?) to help her, so maybe you should change your focus. What is her space like? Is it homey, is it “her”? Is she proud of it? Is there something you could do or get her that would make it more so? Pretty bedspread? Fresh flowers? They don’t have to be expensive, daisies are cheery. I personally think there’s nothing like a large potted fern in a corner to liven up a room (fake – no care needed). Perhaps you could hang some bird feeders outside on her porch, give her a reason to look out there? You know those bell-shaped ones made of seed, in the grocery store, that you don’t have to refill? By spring she might want to spend time out there. Flowers; birds; if she won’t go outside to life, you can bring some life in to her. If you feel strongly that interaction will be good for her, help create an environment that she will want to invite others in to. Is she proud of her appearance? Is she hiding away because she’s embarrassed about how she looks? You’ve probably considered all of this – just throwing ideas out there for you, since you might be too close to the situation to see it clearly.
I think the most important thing you can do for her is to make sure she feels that yes, what she wants and feels does matter to you, and that you are there to support and encourage her, not push her. She has so little control over her life now, don’t make appointments for her without discussing it with her first, she is likely to feel manipulated and conspired against. Don’t visit her when you are tired or depressed – caregivers aren’t the only ones who carry guilt. Let her know that you are on her side; that you are ready and willing to do whatever you can to help make this time of her life as meaningful and fulfilling (and yes, HAPPY) as possible. And do that. And then, when you leave the facility, get back on your own track; focus on what’s ahead and where you want to go. You are a good person. You deserve to be happy. Choose your cargo carefully and make this one life you’ve been given an amazing one. ~ Jean
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Jean – Thank you so much for your heartfelt idea packed reply. I really love your ideas about my mom and giving her the control that she truly doesn’t have. I also want to thank you for pointing out all the blessings that I have going for me as well.
I had an idea today about putting together a scrapbook of sorts for each of the kids and their dad – the great part of it is maybe HE (their dad) could help them put it together or if he’s not up for that we could make it a group effort. Both the kids (actually boy and girl – boy 14 and girl 12 will be 13 in Feb.) are dealing with anger to one degree or another towards their dad. They both are also talking to counselors as well. Both have a hard time verbalizing their feelings.
I love what you said about choosing the cargo carefully. I also started thinking about the lyrics to “Along the Road”. I guess I’m at the “fear in the journey” part.
Your kind and wise words are inspiring me to get up, flush and keep traveling down that road. I love this site.
Thanks to Char as well – all the posts on these pages help and inspire me. Time to get some rest! It’s Monday!
XXOO
Marietta
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Marietta, I think the scrapbook idea is a great idea – a good way to remind the kids of who Dad used to be, and happier times. It had also occurred to me to ask if your mother has any photos up of herself, in her younger days? My mother really likes for people to see photos of her when she was a young beauty. When Dan was in the hospital I set out photos of him, sailing; laughing; cooking; so the staff would picture him as a whole person, instead of a one-dimensional patient. ~ Jean
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Wow Jean, a wonderful amazing idea, thanks so much, great for all caregivers to look at, and amazing for the patient to think/know/remember life as it was or will be again. I for one, am going to do this rite now for my husband who is still not able to walk, and still under wound care, but pictures of “better” times is just the thing, brilliant idea! Geez Jean, you really do rock and big time too! Marietta, i think this is great, let me know how you make out too!
~Char
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Thanks again Jean – and also to Linda and Char. Just wanted to say that I love the idea of pictures of younger days. I am a nurse, but currently don’t work at the bedside (Poison Center) but when I worked in ICU I really liked it when families brought pictures in. It is too easy to get caught up in the machines/procedures/labs. All too often patients don’t look a think like their pre injury or illness. Seeing a picture certainly helps the “staff” see the patient as they truly were. I’ll keep you posted.
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Hi Marietta,
I could say I feel your pain, but it wouldn’t help either of us. Jean’s ideas, thoughts and concerns for you are rite on. I too at times feel hopeless, helpless, alone, sad,and depressed, so I am sorry you are feeling that way now. Wish I could reach out and give you a hug, we all need one, and maybe a good cry, just to clean out the tear ducts!! I am caregiver to my 90 year old mom, and husband with several health concerns. I try to remember that life is short; we only have this one, so make it as good as possible. All these things are much easier said than done, but give it a try and let me know how you make it. Thinking of you.
~Char
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Thanks Char – I know you are going through it as well. Let’s join in a group cyber hug! Keeping the tear ducts clean. Hang in there with your Mom and husband and know that you’re in my thoughts and prayers.
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Update on ex-husband with glioblastoma (brain tumor) – good MRI results today – chemo working so far. Feeling very grateful and so looking forward to spring. Hope the groundhog was wrong! Thanks Jean for this site. So many stories – so little time.
Marietta
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Yay! Some good news to warm us on this cold winter night! Thanks, Marietta. ~ Jean
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