More than just a caregiver...

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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!

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Hi Lefaucon, it is now close to your trip. Your mom is still going strong (in the sense that she is not literally at death’s door.) As I read your latest 2 posts, this is what popped in my head:

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!!!
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Hi Lefaucon - I am sorry that you have not been able to resolve this question as yet, and are in such turmoil regarding whether to take the time out for yourself which you know you need in order to carry on with the burden you carry but seem unable to give yourself permission to do so. Have you considered the end result of pushing yourself to the nth degree for her? There are dire emotional and mental consequences if you do not look after yourself properly. My sister developed a type of dementia in her 50's that is caused by prolonged stress, which is the reason we are caring for her. My doctor has cautioned me not to allow myself to get to the same point. Looking after yourself is the number one priority in looking after your mom.
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???
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Dear Bookworm,
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.
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I'm so sorry for your struggles. Mom was diagnosed with Alzheimer's/Dementia a little over 7 years ago. We recently moved her to a NH because Dad's health was declining so fast. It was a difficult decision but we were all just so exhausted and worn out we felt we had no choice. The guilt is always there ... but knowing she's getting the most excellent care possible makes it tolerable. Regarding you having given up your cycling, it made me realize something. I think for many of us, we give up the pleasures we have because theirs have been stolen from them and we feel we don't deserve them if they have lost theirs. I don't comment on many discussions because this journey is so very private and denigrating (for the patient) that it almost feels deceitful to write about. But truly, these comments/posts have helped me keep my sanity the last few weeks. Keeping you in my heart and prayers.
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Dear Bookworm and Granonthego,
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.
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Lefaucon, I went on a 2 week vacation about 5 years ago. During the vacation, I found out accidently thru a roundabout way that my mom was taken to the ER. I was upset because although I'm not home, no one thought to let me know. I felt as if my being a secondary caregiver was NOTHING in that no one thought to let me know of her situation. But because it wasn't anything that required me to drop everything and fly back home, I stayed and continued with my trip. That's why I included questions 3 and 4. Then 2 years later, I again went on another 2 week vacation..because I needed to get away from the parents to give me time to find a life outside the parents (hence question 1 and 2.) ...I have goals to leave next year for another 2 week vacation. Still trying to brainstorm on who can care for my 2 bedridden parents, though. But I haven't given up on it!!! ... Take Care!!!
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Hi Lefaucon. I was half through a reply to your latest post, when we had a short power glitch which meant that it was all lost!! Such is life. Just hope that I can recall all that I had written.
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.
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Dear Bookworm,
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.
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Lefaucon, that is a very hard question to ask us. This is a question that only you can answer. But I can ask you some questions and maybe you can sit down and meditate on it. No need to rush with the answers because the answers must be found in both your heart and mind. Right now, both are in conflict. One wants to go and the other wants to stay in case your mom turns to the worse with the little time she has left. And if I left out any questions, then Granonthego or any other poster can add theirs.

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!!!
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Dear bookworm and Granonthego,
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???
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