More than just a caregiver...

Fortunately, I have the most wonderful little grandson, so I truly think of myself as his Gramarley first! Being sweet & entertaining & attentive, he brings out the best in his great-grandmother (and me, too) which allows me to see what there is good in her. And, I also have a terrific boyfriend who is also his family caregiver, not so upclose and personal caregiving yet, but enough to understand and accept my situation and I accept his. So, at almost 64 years, I am also a girlfriend, lol, along with being a mother to my grown children, a sister, an aunt, a friend. Sadly, I don't think of myself so much as a daughter anymore, but a caregiver. In the scheme of things, Mama could do much worse than me though, lol. We are all students, too, learning more than we ever wanted to know about our loved ones, the health care system, and ourselves. Most of all, I think that we are all fighters, fighting for those we care for, and for ourselves, too, and our other loved ones, to do what is right today and to survive to fight another day.

This question actually raised anxiety! I am ALSO a yoga teacher, a volunteer, a confidante, a herbalist, and I need to remember that!

Just realized that I didn't say that I think of myself as a widow. I don't. My husband has a special place in my heart but I don't think of myself as his widow. I was the wife of a wonderful man who I will always love. I think he would like that. Lol, don't think he would have ever thought of himself as a widower!

This is something I have been thinking about. I taught in a small university in south Georgia, then went into online sales before coming here to take care of my parents. When I first came here, my old life was still open to me. I could have slipped back into it without any problems. Three years later, I am totally divorced from how things used to be, and I realize that my life has become one of a caregiver who sells things online. I am in a terribly vulnerable place, because I do not know where to go from here. It is like I took on an job that offers no pay, no benefits, and is going to consume several years, but is going to end at a time when there will be no good opportunity to rebuild my own life. I know that I am not alone in how I feel. I do not have any good answers. Caregiving consumes so much time and emotional energy that it is a challenge to live in the present, much less think a lot about the future. I know I have to prepare for the future or it will be terrible for me.

Excellent topic choice. Yes, I do sometimes feel defined by my role as my mother's primary family caregiver. After all, it does take up the majority of my time! But if I stop and define myself aside from that, I consider myself to be a Dancer as that was my first and most beloved focus in my life. I am a Dancer who paints, weaves beads, and has a Masters in (astro)physics. I am not employed. I don't get paid for caregiving. I market (or try to) my art myself and I also am an adjunct at two universities (one online).

I am a highly talented, highly intelligent, financially distressed caregiver. I can't really plan for the future because the present is ill-defined, concerned as it is with the vagaries of caregiving. It's not just the health issues, as you must know, but also the issues arising from the horrible way this country manages health care. I blame the health insurance companies for most of this. But that's another topic...

I am a mother and a wife besides a caregiver but i see myself as a writer, crafter trying to sell handmade goods like afghans or blankets. I also see myself working another job as a teacher's aide to help work to strengthen my family finances but I am also strapped and tired of renting a place that needs so much in repairs and dealing with a landlord who finds it difficult to work with the disabled that rent from him, I am trying to save funds to buy a house one day for my family and present company I have staying with me because I have been at home far to long and feel that I have lost my path and my identity; thusly i am a caregiver and I put the emphasis because my reality is that and nothing else but then no one cares about the sacrifices we make for the loved ones and have to bust our butts to make every day count. I am always tired and stressed so yes I am just extraordinary woman labeled as a Caregiver:)

I am in fact a caregiver who is also a writer. I view my writing time as a release from my care giving duties. I try to have paper and pen/pencil with me at all times. When I'm waiting with my loved one in the doctor's office, I "tune out" and go to my novel where I try to work out some phrasing. This goes for other "waiting" places as well. I've written whole short stories while my loved one takes a nap. I also have a "sacred hour" each day for writing (it doesn't always happen at the same time, but I don't consider my day complete until it happens).
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.

I am in fact a caregiver who is also a writer. I view my writing time as a release from my care giving duties. I try to have paper and pen/pencil with me at all times. When I'm waiting with my loved one in the doctor's office, I "tune out" and go to my novel where I try to work out some phrasing. This goes for other "waiting" places as well. I've written whole short stories while my loved one takes a nap. I also have a "sacred hour" each day for writing (it doesn't always happen at the same time, but I don't consider my day complete until it happens).

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.

I am in fact a caregiver who is also a writer. I view my writing time as a release from my care giving duties. I try to have paper and pen/pencil with me at all times. When I'm waiting with my loved one in the doctor's office, I "tune out" and go to my novel where I try to work out some phrasing. This goes for other "waiting" places as well. I've written whole short stories while my loved one takes a nap. I also have a "sacred hour" each day for writing (it doesn't always happen at the same time, but I don't consider my day complete until it happens).

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.

Thank you everyone for your thoughtful responses so far. You are all truly inspirational individuals!

Perfect timing I must say! This is something i struggle with daily. I too am a writer. I dabbled in making my own greeting cards. In my career i was a marketing assistant and created a theme for a sales contest and wrote several ads for a local magazine. I would like to write a devotional and eventually sell it

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.

Often I wish I could be "just a caregiver." I work. Working full time and having full-time responsibility for a husband with dementia is extraordinarily hard.

I refuse to be "just a caregiver." I saw this when dad was mom's main caregiver. I didn't want that to happen to me. After he retired to care for mom, his whole life centered on mom. He refused to leave the house because no one can take care of her like he does. But, he was becoming more and more bitter as the years go by because all his 8 childred (myself included) were not doing enough for mom and him. When he became bedridden, I made my voice loud and clear to family that I was NOT quitting my full time job. I told them that I have no problem walking away because it will now be THEIR turn. So, I fight constantly to Not Be Just a Caregiver. It's so not worth it if the patients don't appreciate what you're doing for them.

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 am a 71 year old caring for my 92 yr old mother AND my divorced 61 yr old sister who developed frontal lobal dementia 6 years ago. Without the support and efforts of the 74yr old love of my life I could not have coped with the load of the past 5 years. We have both been successful in many fields in our 'past lives' but truthfully are so overwhelmed by the demands on our time, energy and emotions that I struggle to have any confidence in myself as a worthy person, or that I have any identity apart from my role as a caregiver. Early on we determined that we would at all costs not drop out of our regular commitments such as book club, classical music society and church because we realised how important it was to keep outside interests. Interestingly this has drawn forth some comments such as "well you would not be so tired if you gave up going to book club, or music society...." We continue to participate even on those days when we are exhausted! However I was recently asked to be a speaker at a forum - something that I had done regularly for many years, and my immediate reaction is " I can't do this " and I realise how much my confidence has been eroded by falling into the trap of making my role as a caregiver my identity. I no longer see myself as a public speaker, or even having anything worthwhile to say.

I have no answer to your question because, yes, that's all I feel that I am. I feel as though my university education was for nothing and all a waste of time and money. Now the student loan I am paying for in forbearance, I am paying to the air--for nothing. Any advice from anyone out there?

Lefaucon, may we know what is your situation? If you read the previous comments, you will see that new comers give background information so that we know something. If you want a WIDER audience who can give THEIR advice, I'd suggest going to the thread: Caregiver..How are YOU. Just type that title on the SEARCH BOX on the top right of this site. Hope to hear from you!

Dear Bookworm,
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.

Thanks for sharing your story Lefaucon. You have had a rough road and it ain't over yet. We are here for you.

Thanks for sharing your story Lefaucon. You have had a rough road and it ain't over yet. We are here for you.

Lefaucon, is your student loan from the federal government? Or a private one? If it's federal, it's good news. I'm not that familiar with students loans but I do watch a lot of HLN News. If you can go to HLN News then find Clark Howard the search on his site - student loans. I do know from Clark Howard that you cannot declare bankruptcy against your student loan. You Must Pay for it. But check out his site and see what he recommends.

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!

Dear bookworm and Granonthego,
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?

Dear lefaucon, You are indeed suffering from severe caregiver stress. Let's take it one day at a time. Set yourself a target for tomorrow to do just ONE of those activities that you so enjoyed before. Physical exercise is so necessary for stress relief. So how about going for a 20 minute bike ride tomorrow - or whatever you feel is realistic for you, while your sister sits in for you. It will not be easy, but if you do it just once it will be the beginning of a new pattern for you, and easier to do the next day.
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.

Hi Lefaucon, Granonthego gave some very good advice in which she has experience with. I'm still struggling - like you - but I refused to take on my parents' caregiving 100% by quitting my job. I've learned in all my years, that my job was My Sanity. It's a very stressful job but it is NOTHING compared to caregiving. I refuse to give it up. If my health/life is hanging in the balance, and my doctor said that I needed to quit my job to destress= I would NOT do that. My caregiving duties are 100% more stressful than my job. I would just continue "as is" and if I die, I die. Majority of my Family won't help me physically so I'm on my own.

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!

Hi Lefaucon. Today is a new day and as yet no response from you . Hope that being out on your bike is the reason you have not been able to read the forum!

Lefaucon - just read the article on the latest Agingcare newsletter " Why It's Important To Be Your Own Best Friend" By Anne-Marie Botek. It is right on the nail.

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???

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!!!

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.

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.

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!!!