Hello all,
It's Anne-Marie, one of your AgingCare writers. First of all, on behalf of your AC team, thank you for being a part of our thriving community!
I'm hoping to get your perspectives on a conversation I recently had with a caregiver while I was interviewing her for a story.
During our discussion, she mentioned that one of the hardest things about caregiving was the feeling that she was "just a caregiver." She was so consumed with caregiving that she felt defined by her role and couldn't see herself as anything else.
Now this woman loves to write and, when her schedule permits, she works on what she hopes will one day be a published romance novel. But if you were to ask her if she was a writer, she would say, 'no.'
She's also a mother, a wife, an aunt, a mentor, a friend...the list goes on.
It seems like this would be a common feeling for caregivers, and a topic that needs to be addressed.
Do any of you out there in the AC community feel this way as well--are you defined by your status as a caregiver?
What else are you? A scrapbooker, a volunteer, a lawyer, an activist, a pet owner?
What advice would you give to someone who find it difficult to see past their position as a caregiver?
Thanks!
1. I felt so bad that your mom waited all day for you. And maybe her mentioning that to you is a reminder that next time when you are unable to come, to please call her and let her know that you’re not able to come. There really is no need to Tell her WHY. You’re an adult, and your visits to her are Not Mandatory. You are doing this out of the goodness of your heart.
2. Your mom is still in good condition, and not at death’s door. So, I think you can go on your trip. If it assuages your guilt, you can call daily but keep it to a minimum. Don’t stay too long on the phone – limit your talk with her (because she will try the guilt trip again.) If the first time you call and she just overdoes the guilt trip, maybe you can call your sister and ask her of your mom’s status – for Your Peace of mind.
Lefaucon, I almost did not visit this thread. In the future if you need my immediate attention, please click on my name, and leave a Comment on the Comment box saying, bookworm, I left a question on the More Than Just a Caregiver. Or you can send me a HUG and leave the same message.
I usually visit New questions and rarely go back to the ones I’ve answered from. So, by dropping me a note in my Profile, (which I check daily), I will know to come here and check it out.
My father is very good at making me feel guilty. But it always balance out because he turns around and says that I’m a Bad Daughter. So, one day, I feel guilty, and then the next, I’m so angry with him because out of 8 kids, I’m the one here helping them. Please understand, this has been going on for 23 years!!! Are You Really Wanting to Put Your Life on Hold for that Long???? Your mom is in a facility that will care for her. If she doesn’t eat, she’s only hurting herself. Plus, I’m sure she must have sneaked some food in her. Have you ever tried Not to eat a whole day? My stomach would hurt so bad, that I’m forced to eat. (I tend to forget to eat, but my stomach reminds me.)
You need to harden your conscience. You have done so much for your mother. Way more than your other siblings. Don’t you think, you deserve this break? Everyone who has a job needs vacation. Well, you also need one, too. (I took my vacation – 14 days away from this island. I felt bad but …. I needed that trip! And I enjoyed myself. Not once did I call home because to call home would make me feel guilty. I knew that I had several relatives whom I paid to help out my father. I did my best to cover their care, and I took off! Of course, I also knew that if mom had died when I was on vacation, I would have felt bad. But, mom didn’t die!) I hope this helps you! HUGS!!!
Ask yourself whether you are allowing yourself to be manipulated by your mother. It sounds to me that she is playing you like a violin. Is she in control of ths situation or you???
Just wanted to tell you that I re-read your questions to me for myself should I decide to go to San Fran with bro. It truly helps. I must re-read it and answer the questions honestly from my heart. I feel already that some answers are more stable than they were last week. But I just posted another question about Mom and San Fran. If you could please read it and respond to me I would be very thankful.
I wrote a couple of weeks ago about the guilt I feel when I must leave hospice and Mom is brokenhearted, remember? And if I should go to San Fran for 5 days, remember? Anyway, yesterday I did not go see Mom. I was not feeling well and I was in such a bad emotional state that I needed to stay at home. Well, I called Mom at hospice and she was so very hurt and sad that I did not come and was waiting for me all day. Then she said she couldn't eat because I was not there. I broke apart. Now I have the extra burden to carry that if I do not see Mom one day, she will not eat. I cannot carry this burden, but I must, must I?
Brother is going to San Fran first week of Nov and now I was re-thinking that I need to get away, but now with this new heavy burden, can I live with myself there in San Fran and even have a good time and eat at great restaurants there? Will Mom not eat for 5 days if I go? Will her emotional state be so bad by not seeing me for 5 days make her illness worse by not eating and her physical condition worsen greatly? I realize that no one can answer these questions for me, but I would like some input on what you have to say to this new burden that I must carry. Is it really a new burden? Is it my responsibility to make sure Mom eats because of me? Will she starve herself because of me? Now I am in worst shape than I was in last week.
There fact that you are asking advice about whether or not you should take time off to go to SF is an indication that you really do want to go, and are looking for permission or justification to 'indulge' in such a seemingly selfish act so that you could cope with the guilt of making such a decision.
One of the many traps we caregivers can fall into is that of thinking that we are totally responsible for what happens to the loved one we are caring for. In other words we put ourselves in the place of God. Rather than just being willing to serve we have the audacity to think that we are in control. It is a human failing, that when certain facets of life become 'out of control' we endeavour to regain control by controlling what we can even more tightly. Letting go is hugely difficult for those of us who are by nature responsible. Yet Letting go and Letting God is indeed what God demands of us. Are we really so arrogant as to think we can determine the course of events such as life and death? The most responsible way we can behave is to love our neighbour as we love ourselves, which implies that we don't put ourselves down at the expense of others. We respect and honor them as we do to ourselves. Something that we find difficult to do when we are in a state of depression.
My father died 3 years ago while I was thousands of miles form home. We had booked and paid for the trip before he had a fall. It was pretty likely that he would pass away while I was away, so I got together with my brother and we planned every detail of his funeral before I left. Yes, it was hard when I got that call early one morning to say that he had passed on. And even more difficult because there was no way we could afford the huge expense of cutting short our trip to get home in in time for his funeral, so I was not able to grieve together with my family. But you know what - it all went fine. Life moves on. And one day I will see Dad again and I know he will understand, because as my Dad he always had my best interests at heart.
My sister's disease has a 6-8 year life expectancy. She is now in her 9th year and looks set to live many more years as she is so well looked after. Our times are in God's hands. We are only responsible for how we conduct our own lives, not to determine the lifespan of our loved ones.
November is a long time away. Anything could happen before then. Take life one day at a time. Each day has more than enough problems to deal with.
Wish you were close enough so I could give you a real hug.
Hey - is that bike out, cleaned up and ready for a ride yet??? Am waiting to hear.
Thank you for the great advice and questions that I need to answer. I already can answer # 3 and 4 right now-and the answers are "yes." But the others? I need to pray about answering those. And you are so right. I loved Daddy so much I still think of him day and night--in a good way--sad and happy at the same time--but not in a bad grieving way. And I love my mother so much and she loves me probably more cause I am the youngest and the baby of the family. Can I forgive myself if I am away and she passes [#5] --I cannot answer that tough one right now. Gosh, if it comes to that, the answer would be no, I would definately regret greatly that I went--after all-I've been to San Fran many, many times so it wouldn't be a new adventure-just respite for me. If Mom passes and I am here, I would need to be with sis to make all the arrangements as we both did with Dad--where I had a great say on how everything should be. And I was the only one who invited my friends from church and it was I who spoke before the pastor-also from my church. This is one of the answers that I copy and paste onto my "advice from CG from the forum agingcare.com" document. I need to re-read your questions and advice more than just one time, but several times-which I already have done to come to conclusions on whether or not I should go.
As I feel right now, the answer is 50/50. I must pray and meditate on your wise questions. I think also that all the answers can be made quite quickly depending on how Mom is in Nov. That is almost two months away, and Mom isn't going to get any better from now on, only worse.
I think right now, my answer would be no, I could not go. But that may change, depending on the situation with Mom and as you said, my "emotional attachment" and love that I have for Mom is so great.
Thank you. You are very intelligent and wise and surely appreciate your timely response in all that I write.
1. How badly do you NEED to go on this trip - for YOUR health? Sometimes, we CG need to leave the home in order to build or patch up ourselves. So that we go back to caregiving in better shape than when we left.
2. How badly do you WANT to go? Just to get away from the stress of caregiving and concentrating on the ME.
3. Do you Trust your sister to care for your mom while you are away? If you don't really trust her, can you still go knowing that sis will do the best of her ability to care for mom?
4. If you go and mom turns for the worse, do you trust your sister to Call You and let you know so that you can fly back home ASAP?
5. If you go and mom suddenly dies, can you forgive yourself?
We can all tell you to go because you did your best to care for mom. That you're stressing, and even her doctor is concerned for you - so you should go. But all this means nothing if - IF - something happens to mom while you are away - and you blame yourself for not being there for her. And that's why I said that you're asking a very difficult question. You are just so torn about it. It's really YOU who must decide.
For myself, I would go. But at the same time, between now and during, I would be praying to God every night to PLEASE don't let anything happen to her while I'm gone because I know in my heart that I would feel soooo bad. And I would feel guilty that I wasn't here when she died. But, you're not me. You are you. And you love your mother. Whereas, I grew up from a dysfunctional family (both parents abused us). I don't have the emotional attachment like you do. So, again, you're asking a difficult question.... that ONLY YOU can answer...HUGS!!!
Reading what the both of you write to me is such a blessing and relief!! Who else can I talk to to people who truly understand what I am going through. I responded to you, Granonthego about me being accountable to you about my cycling activities and working out regularly and I replied that I would try that very hard. The first step towards what gave me thrills in the past is so very difficult. So difficult that I can hardly believe that I stopped doing it. Well, I was forced in the beginning to stop doing those things because of caring for my parents, but now, I really have no excuse except the depression and stress that I am going through, losing interest in doing things that once gave my spirit such uplift, etc...
And yes, bookworm, I have no-where to de-stress and get away, but by doing those two things is a de-stresser I know.
Brother has to go to San Fran in November for work and when he must go he always asks me to go with him. My greatest pleasure in going to San Fran is eating the great food there and being in beautiful cool/cold weather. A friend of mine said-GO, just GO. But that depends on how Mom is doing in November. If she is really going downhill I don't think that I should go. I know that sis will step up and stay here for the 5 days that bro and I would be gone.
Sometime in early 2011, I did go with bro to San Fran and I felt so guilty that I had nightmares every night at the hotel and couldn't just "turn off the switch" for caring for my parents. Then the guilt set in. 5 days is definately not enough to truly de-stress. Please give me advice on whether or not I should just GO and not even worry about Mom. Please remember that the doctor gave her 6-9 months to live and November will be the 5th month. But oncologists can never be super accurate when it comes to cancer right? I feel that I should go, but then, I guess it all depends on Mom right? Please advise???
But unlike me, you have NO WHERE to destress. We have Spanish in our blood. So father and I have this full blown yelling matches every couple of weeks. I have fave sis to complain to. I have this site to tell my darkest emotions cuz sis will become gungho combative and Tell Me to tell off people. Of course, she is one of those "do as I say but not what I do."
As I was reading Granonthego's advice, I thought it was very good. Even saw where some can apply to me. Her advice is going to my Word File saved on my Desktop: Words of Empowerment. Thanks, Grano! Take care both of you!
Your doctor is right. You cannot and must not be in the trenches 24/7, no matter how much you love your Mom. Will you be accountable to me over this????
Years ago I went through a severe clinical depression myself (not in this caregiving situation) so I know how hard it is to break free. You have to take that first step even though it seems impossible. I will be praying for you, but like the man who lay beside the pool of Siloam, YOU HAVE TO TAKE STEPS in order to be healed. You have a purpose for living, beyond that of caring for your Mom!! If she were in her right mind, think how painful it would be for her to see you 'giving up on life'. Do this for yourself AND for your Mom.
Thank you very much for responding to me and giving me great advice. I am so glad that I finally joined this forum. I have been reading it for over 6 months but never thought to join until only several days ago and you've helped me greatly. It's amazing how I can talk about things and other people truly understand my situation. No one who is not a caregiver can truly understand what we are going thru. No matter how much you try to explain, they will never understand it all.
I thank the Lord that I have a great brother and sister who help me as much as they can. Brother takes care of all the financials and sis helps me with the cooking and spending time here to give me a break. Remember the hospice doctor was more worried about me than Mom when he came? That really hit home with them. If I end up in the hospital, what are they going to do without me? I am the one in the trenches 24/7. I love my Mom greatly and we still have a loving relationship even with the dementia. But the doctor said that I am trying to be the perfect caregiver and there is no such thing. He said that I was the one in danger of ending up in hospital.
But I still suffer from clinical depression and sadness seeing Mom deteriorate before my eyes. She is so frail and weak and looking at her sleeping just about kills me. I am seeing a therapist, but one of the symptoms of severe caregiving stress-that I've read on this website is losing interest in things that you once enjoyed. I am a cyclist---well I was...up until both parents needed all of my time and help. I worked out regularly, and rode my mtn bike and racing bike regularly but do not any more. Doing those things in the past gave me a spiritual freedom, with the wind blowing in my face and the power it made me feel, made me feel strong and happy, and uplifted my mental state to a point of ecstacy. But I haven't done those two things in months and months and I find it impossible to resume doing those two things that once gave me the greatest pleasure in the world. Actually, I've lost interest in just about everything. I don't go out except to do necessary household upkeep stuff, I isolate myself, and don't want to talk to any body. I hate to wake up in the morning to get out of bed even if I've had a good nights sleep and hate the afternoons, when I am burned out already. Please help?
As for your mom, I'm so sorry. You have triple whammy - your dad dying. And now your mom with her cancer. Will you have enough funds to continue for her partial paid caregiving by outside help? Because it sounds like it will continue to go downhill before you hit rockbottom and eventually get out of the guagmire. In the meantime, please feel free to vent (there's the GROSS thread) or the Caregiver How are YOU. I think you will benefit more advice and encouragement if you go to one of these threads! Take care!
Good idea, since I am new to this site, I didn't realize that. Mom got sick sept 2010 and then Dad got sick oct 2010. Mom had a colonoscopy and they found a large cancerous tumor that needed to be removed along with 6" of her colon. That was the incredibly downhill slide for Mom. The anxiety and fright came and it was like the dementia almost happened overnight. Then Dad got sick only a month later. Mom recovered from the surgery really well, but then the dementia became quite evident after that and has been progressing rapidly ever since. Dad had a brain problem--shaking, almost convulsing so he had many ER visits with me going with him every time. No cure, just anti-anxiety pills which worked. Then Dad went really downhill and kept collapsing on the floor from weakness from not eating, lost his appetite, couldn't move his bowels, more ER visits, etc. Doctors couldn't diagnose the problem after about 8 months, only the last ER visit did the doctor have the wits to get an xray of his colon--he had impacted bowels. There are so many more detailed things that went on but then I'd have to write a 5 page essay. I'm trying to condense everything from 2010. He suffered so much, when I think about it now, I get so mad at the doctors couldn't logically think that all he needed an easy xray to solve the problem. It would of been solved early and he wouldn't have needed to be put in a care home and could be still alive today. By then he was so weak from not eating that they gave him a very painful enema and everything came out. We placed him in a fly by night mom and pop care home where he was abused and we moved him to a better, dedicated care home for 2 months. But they called us too late--he should of been in hospice long before that. They were incompetant to recognize the signs that Dad was slowly dying. So before that I was taking care of Dad and Mom at the same time. That was when we decided I needed help and hire caregivers. First two we had to fire--totally incompetant, now I have two Christian girls who are loving, compassionate, and kind. But by then and now, I am burnt out, stressed out, yelling at sis and bro and losing it in every way. Dad passed away just this last May so now I only have Mom to care for. Her dementia is advancing rapidly, so when the CG are not here, I take care of Mom 24/7. She is under hospice care because the cancer migrated into her lungs. Oncologist doesn't recommend chemo for various reasons: underweight-less than 69 pds, too weak, no appetite, her age-86 yrs, etc... So I am caring for my Mom as long as I can and even want her to pass at home if we hire overnight caregivers, but I don't know if I can handle it. If I am totally stressed and burned out now, how will I be able to handle it 4 months down the road when Mom is bedridden? This is my life. Before 2010-before they both got sick, I was planning to move out, work, and eventually move to Colorado. But all that is destroyed now. At first I was resentful, but now I know that God wants me to care for Mom till the end and I have accepted it. But that doesn't mean that I don't suffer all the CG problems--which I do. I've lost it many times and even the hospice doctor was more worried about me more than Mom when he came to visit and assess her! I have what is called "anticapitory grief" - grief that is very real because we know that we are taking care of a loved one who is dying and the symptoms I get are very real--as if Mom is already gone. Its super difficult to care for a parent with dementia--as all of you already know. Especially when we had such a loving relationship throughout our entire lives. When I look at Mom when she is sleeping all I want to do is cry. And lot of times I cry in the back bedroom when no one is looking or around.
For those of you who cannot get an outside job (other than caring for your parent), then please continue with your hobby, art, etc... If you know how to navigate online, try selling your products -except you will need to make sure to pay your taxes (it is considered as income.) Just do something - anything - to reinforce that you are Someone, a person who has a Gift (for sewing, planting, etc..) - to reinforce the POSITIVENESS into your life. Because caregiving has just tooooo much stress and negativity. We all need something to make us feel good - a compliment from others, etc...
I actually now put a little note on the bathroom mirror. Last week, I had "I AM WORTH it!" This week, I will be putting: "I AM LOVED!" (by my fave sis and her daughters and their kids and now...people from this site.) Thank you!!!
I've taken care of my parents for the past four years, now just mom and it takes over my awareness even when I'm at hope with time off. I feel like MY LIFE is on hold and rhat depresses me.
Having an "alternative universe" helps me cope with all the "present universe" problems in a more creative and mindful way. I use it as a distraction to keep me from dwelling on how depressed, angry, and resentful I feel about my care giving duties. Yes, you need to deal with those feelings. I'm going to a care group and have been to therapy to sort them out. But I find the "distraction" of writing a good short-term coping mechanism so that I don't live in my depression. I also use the story to distract my loved one from his preoccupation with his own aches and pains.
I hope this helps. Good luck. Blessings on you.
Having an "alternative universe" helps me cope with all the "present universe" problems in a more creative and mindful way. I use it as a distraction to keep me from dwelling on how depressed, angry, and resentful I feel about my care giving duties. Yes, you need to deal with those feelings. I'm going to a care group and have been to therapy to sort them out. But I find the "distraction" of writing a good short-term coping mechanism so that I don't live in my depression. I also use the story to distract my loved one from his preoccupation with his own aches and pains.
I hope this helps. Good luck. Blessings on you.
Having an "alternative universe" helps me cope with all the "present universe" problems in a more creative and mindful way. I use it as a distraction to keep me from dwelling on how depressed, angry, and resentful I feel about my care giving duties. Yes, you need to deal with those feelings. I'm going to a care group and have been to therapy to sort them out. But I find the "distraction" of writing a good short-term coping mechanism so that I don't live in my depression. I also use the story to distract my loved one from his preoccupation with his own aches and pains.
I hope this helps. Good luck. Blessings on you.