Is there life after caregiving?
I've reached the decision today that I can not continue caring for my grandma. She continues to be the same self centered person she always has been, and I find myself angry with her every day. My own depression is very bad, my frustration at an all time high and my thinking becoming dangerously dark. I've reached my breaking point and am barely hanging on.
Honestly the reason I stuck this out as long as I did was because of Grandpa. With him not here, she's just gotten worse. She has no consideration for anyone else, and I just can't continue living like this.
We plan on talking with her tomorrow, and discussing assisted living. Really, financially, she can't afford the house by herself, and even if I were to stay, we don't need such a big house. She complains daily about being bored and going stir crazy, well at assisted living they have daily activities.
But I am now faced with a scary realization- I am 30 years old, and for the 1st time in my life, will not be directly taking care of someone. Growing up, it was my mom and younger siblings. In my 20's, it was an elderly woman who we kind of 'adopted' each other. I took care of her for several years until she passed away from lung cancer. The last 5 years have been caring for my grandparents.
I don't know who I am, if I am not a caregiver and this is scary. Not scary enough that I can deal with grandma, but scary.
Bless you dear girl for all the careing you have done , there are many a person wouldn't have done what you have done , Once Grandma is taken care of for god sakes run with the wind and go and find out who you are and what you want in your life .It might be scary at first but once you get out there you might surprize yourself . Make a list of all the things you would like to try or do and go and do it . simple as that . I wish you all the best . Gabby
I wholeheartedly support what Gabby said! Think about what you really WANT to do. Dream big and take it one small step at a time.
I'll be thinking about you when you talk to your grandmother about moving into assisted living. Do you think she'll be resistant? Depending on her needs, another option may be a continuing care retirement community. If she's mostly independent, that type of situation could offer her an apartment with lots of safety features, loads of engagement opportunities (classes, trips, arts/crafts, exercise), and the security of knowing that if she did need additional care, it would be provided for her on the same campus.
I also agree with the above posters . . try sitting down and brainstorming up a list of things that make you happy, and any dream you have.. If you wish, you can post a list of your interests here and we can help you sort it all out and suggest ideas of things to do with your interests. I'm in a similar situation myself; I've been caring for my dad and now he is ready for hospice, which means I will soon have to find something else to do. I've also made a list of my interests and am working through what I would like to do. Yes, it's scary because it's something new, but taking baby steps is the way to get through it. I'm wishing you all the best.
First I understand the anger and frustration, I am going thru this with my mom and it is very emotional. Continue with YOUR care emotionally. I find that MY self worth comes from helping others... I am not "good enough" on my own so I must care for others. Counseling helped me a lot... baby steps now of thinking of looking out for myself first (VERY HARD IF YOU HAVE NEVER DONE IT). To get that emotional fix of caring for others, you might try volunteering, a little. Get help, to know YOU are worth something by yourself, and you are not here just to help others. My Prayers are with you (and me)...
Wow. You are and have been blessed.
I love the idea of what some others have suggesting in dreaming big, brainstorming, and keeping what interests you in front of you.
A good step one, before those ideas, face that anger and frustration squarely. Accept that you have those feelings, make it ok with yourself. When you can do this, the big dreams and brainstorming will flow more easily for you. Right now they will create a bottle neck and hold you where you are.
It IS time to take care of yourself. Put what you have learned for caring for others into the mix.
Prayers and positive thoughts for you.
My heart goes out to you. My husband has stage 4 cancer and his behavior is horrible. When other people are around he is all sweet and innocent,the minute they leave he is back to yelling and calling me names.I am a total slave to him. He even calls other women behind my back and hangs up when I enter the room. I have made my choice,to stay,but I am taking back control of my life in the mean time, I make sure to do things for me, from taking a nap to cleaning house, to making sure I stay mentally and physically healthy, not easy to do. But a must. If I was at death's door I would be doing all the good and loving ways that I could think of. Life is too short. You cannot change your grandmother and you need to remember that you also have a life. You have my thoughts and prays.
Sometimes a person's true nature shows up at times like these and no matter how sad and angry they are, you love them but also know when to walk away.
I can surely sympathize with Ranae, Chessie, Gail, and the others that have more or less devoted their lives caring for others. I, too fall into that category...or at least I DID. I cared for my husband for 5 yrs until he passed from lung cancer. Shortly before he passed, my then 80 yr old mother moved in to "help" me through the final stages of losing my husband. It wound up that I went from caring for him until he passed to caring for HER for another 10 yrs. In the meantime, while caring for her, I myself became disabled, but still cared for her.
She passed 3 wks ago at the age of 90. She passed in the afternoon, and that night I felt guilty because I almost felt "relief". That's terrible to say, and I lay in bed that night thinking that for the first time in 15 years, I was NOT on 24/7 call to someone. While I suppose that might be a calming factor to some, it was almost a terrifying feeling to me! I felt like I have no life of my own...and haven't in 15 yrs, and I am not sure I will be able to find a life again.
The past 3 weeks I have been kept so busy with going through all her household things and sorting out what I want to keep and what I don't, that I don't really have time for much else. I guess keeping busy is a good thing, but I know sooner or later (and probably later) I will have gone through all her things and have everything sorted out, and I will HAVE to think about....."NOW what". I have no idea what "now what" will hold, but I am scared that I won't know how to be "me" anymore. I think it's compounded because while I was "healthy" I COULD have probably found my way, but now that I am disabled, finding myself is going to be even harder. I almost feel that I had no life while I could "enjoy" it, and now I have one...well, it's gonna be tough.
I'm certainly not in the caregiving situations that some of you are detailing. Although I've been feeling some of the emotions many of you are expressing here. I had a MAJOR breakthrough with some of my own emotional baggage which happened just this week. I've been doing a lot of releasing and letting go of feelings of - approval, acceptance, control, security. The ones that were rearing up for me in guilt, fear, anger and the like. Do try looking at The Sedona Method which has been of tremendous value for me. It might help any of you as well. Here's an article by the author of the program, http://www.huffingtonpost.com/hale-dwoskin/a-simple-but-radical-way-_b_840998.html - I don't get anything for recommending this program. I just know, it works for helping me through all my feelings during what is a trying passage in my life.
I was my husband's sole caaregiver for a number of years before he died. Age and illness does not change a person's personality but it greatly magnifies it. My heart goes out to annonymous whose husband has stage 4 cancer. Not only did my husband have a bad heart he had dementia (not AZ) My health was on a downward spiral, so much so that when he died my daughter was alarmed enough to move me in with her so I could be looked after. But, guess what? Six months after he died my health was regained and I felt better than I had in years. He's been gone 3 years now and I can honestly say all I feel is relief.
I feel your pain. I am 54 and have been the family caregiver all my life. My grandmother, my kids, my dad, my husbands uncle and now my mother who had dementia. Luckily I have a husband who is also from the cargiver fold. Everyime someone passes, I think I am done, but another family member always seems to be needing care.
Find the joys in every day life, volunteer somewhere. Take a class, travel.
Maybe try caring for animals instead of people! They are more appreciative.
Caregiving can be very rewarding but it does come with a price. Don't lose yourself in the battle.
I NO WHAT YOU ARE GOING THROUGH. MY MOM LIVES WITH ME WITH SEVERE ALZHEIMERS. SHE IS VIOLENT, FOUL MOUTHED AND VERY MUCH IN ANOTHER WORLD. I UNDERSTAND ITS A DISEASE AND THERE NIS NO CURE. AT TIMES I THINK I CAN'T DO THIS ANYMORE BUT I KEEP GOING, GIVING MY MOM WHO IS 77 THE BEST CARE I CAN AND SHE DESERVES. SHE CARED FOR ME AND NOW I SHALL CARE FOR HER. I NO FOR YOU ITS A HARD DECISION TO MAKE BUT DO WHAT YOU NEED TO DO. FEEL NO GUILT. SHE KNOWS YOU LOVE HER.GOOD LUCK AND HUGS TO YOU
Given your caregiver background, you've neglected the most deserving person who requires care, yourself. Consider enrolling or auditing some classes in subjects that have always peaked your interests but had to put aside due to familial obligations. Look into clubs or organizations, hobbies, activities that used to put a gleam in your eye or you dreamed of doing in your heart of hearts in your most quiet, lonely moments. This can be a golden time for you, don't let it get away. You don't want to live with regrets.
Well done for being mature enough to recognise that you must relinquish the caring of your Grandma. That is far better than what I did, feeling guilty and finally being hit by depression, because my mum didn't think that I did a good enough job. I am now fine and she is so happy with carers who are not in the family that her life has actually improved. What to do now? I suggest you spend each day just finding out. I have discovered the joy of walking in the countryside with a walking club. Writing short stories and belonging to a Creative writing group, just hanging out with friends over a cup of cofee, and also working part time. I believe that we care for people by being their friend and by having a smile or time for them. It does not have to involve giving up your own life for them. Everyone makes their own story. Good luck with yours, there is no correct path, only the winding road that you make for yourself.
I really feel for you. Like you I have been caring for people since my early 20s. Now I'm caring for my father. He has never really liked me. He loves me but he does not like me. It has been hard to care for someone that does not respect you. He listens to everyone else but me. He accuses me of stealing everything from money to food. He is very selfish and self centered. I tell myself that it is the illness but I know just like you that the way that he is now ,has been the way that has always been. It is sometimes worst because of confusion he gets mixed up, thinks that I'm my mother ect.... Not good. Can be downright hurtful.I'm glad that you are thinking about taking care of yourself. You should have been doing that all along. I have been purposely making time for myself. I have decided that when the time comes he will go to some kind of care home. you can only give so much and take so much. I have two minor children, so my days as a caregiver are not over, self care is the only thing that will get me through the next few years. so go be free have a great life.
Sometimes, when we get to the point where we cannot be as kind as we would like to be, the best thing to do is have someone else do the caregiving. We have been taping our Christmas opening of presents with my mother-in-law for the past three years as her dementia worsens. I noticed this last year that there is an edge to my voice every time I talk to her that I didn't even know I had. It gets to a point where the quality of life for her (and you!) is negatively affected by the resentment you feel. And you can't control the resentment. It's just there. Especially if you have been doing this for a long time. Yes, it's time to move grandma to a place where people have infinite patience and there are many things for her to do. We're looking for a place for my mother-in-law right now because we have recognized that we can no longer give the kind of care that she needs. I hope for the best for all of us.
Thank you everyone, for your replies and suggestions!!!
We did talk to my grandma, and she is insisting on remaining in the house. A 3 bedroom house she can't afford the upkeep. My aunt and uncle offered that she could move in with them, if she didn't want to try the assisted living, and she refused.
Her concentration, cognition, memory all have improved since her return home and the medications for dementia. She would be considered competent to make her own decisions, even if we don't feel they are the wise decisions.
She has a friend who is in her 50's and has offered to "try it out", taking care of grandma. I am planning a trip out of town for a week the beginning of May, and this will be a test for her, to see if she truly wants to do this.
Regardless, I plan on moving out the beginning of June. I will likely stay with my aunt and uncle (and their 4 kids!) while deciding what my next step is.
I can so relate with those that talk about caregiving being tied up with feelings of self worth. I work in the social work field, and if I'm not working or "doing something worthwhile", I have no self worth. Unfortunately, I don't see that getting better. I've done the years and years of therapy.
And the sad thing? As much as I don't want to continue caring for grandma, as mad as I get at times, as much as I know its the 'smart' and 'healthy' thing to do, I still am feeling guilt for planning to leave.
I have walked in your shoes. Get good counseling and make a family decision. Sometimes when depression and desperation set in all you can do is save yourself. A family decision will lift the burden you have carried so long. I encourage you to get out from under your responsibility and continue counseling.
Hang in there. Think about the the things that made you happy before. Reread the books you read before. Try to reconnect with people and activities that you had to give up. This is truly a self sacrificing job. You are to be commended. Let go of the guilt and accept the relief. You deserve the relief.
Peculiar ~ I think, that though I've skimmed through "replys", no one appears to have suggested re-investing yourself with a church family. . . As a "caregiver", 24/7, no doubt attending church was not possible. How wonderful to "get back in the saddle" and grace His house. Church "family" with their diverse backgrounds but "like mindedness" when it comes to worship, is for me the best possible "therapy". . One can become as "occupied" as one desires by delving into the activities in God's house. Finally taking this special time for "you" would be the ticket, I think. There, you will learn that having done your best, given unfortunate circumstance, you can lay your burden down and find release. Through learning the lessons given us by our Maker, He would have you become the person He intended all along. He will help you "find yourself". "Try it, you just may love it". . Just a heartfelt suggestion friend (s). :D
Often in life, the best reward for doing thngs for others is pleasing God and feeling comfort in helping even those who don't seem to appreciate it. However, I was/am both a caregiver (part time in the past) and now becoming a "care receiver". Short term memory going which destroys judgement since I don't remember all the factors in decisions. I will actually be fine going to a home eventually even though I now live in my own, lovely one with my daugther. All our time here is really short and we will be together later so insure that your loved ones are saved (accepted jesus as Savior) and don't be afraid to put family in care homes when it is best for all. Many times, we behave better with new friends than family and visits to care homes can be treats when we can just focus on having good times together.
I appreciate the comments, and don't want to get into a debate, but I've really been struggling with the whole "church and god" thing since my grandpa died. really, since he got sick. Right now, that's not something I am ready to do. I understand it works for some, but it doesn't work for all.
Ranae, you are fortunate that you are young and ambitious and able to walk away. I am going on 65 and have gone through all of my husband's diseases - first was alcohol (I went to Al-anon for years, then realized it was not changing me, except for some very good AA women I did 4 step groups with and learned a lot about me, and have remained friends). Then at age 50 he had to quit work, he got Scleroderma (means hard skin, affects all internal organs and muscles, he is now 71). He has a good pensions (we fought for 10 years for the work one, as it was caused by chemicals he worked with in his trade). The a year ago he was diagnosed with mild dementia, went into a deep depression and we sold our home last June and have been renting and looking to buy again for over 3 months - a full-time job in itself. Our younger son has been living with us, and my spouse figures he should not be with us. Son has had drug issues which are mainly under control, spouse feels that he has no control and was a middle child. I am at burnout with dealing with them on a day to day basis. My son is constantly belittled by his Dad, and has now become disrespectful and calls his Dad a bully, which he is. There is constant negative atmosphere, and I have no break from it. I no longer go out with friends, only online, or my AZ online support group,which is great, though I don't get on there daily. I get told he wants to divorce me, yet he can't live on his own, can't remember to take his meds, doesn't cook or anything really, and no longer has a support group or friends. It is sad to see. Our son sleeps too much, and also does not help much at all. Our older son lives about an hour or more away, and is not working either, the younger one is on disability, so neither are self-sufficient nor really helpful. I try to keep the peace which is not possible. I am hoping when we buy a home things improve. I can't put him in a home,I would lose half my income, and any income I would get if he dies. He is quite aware, reads, goes on the computer, and watches tv. He can't walk very fast, and tires easily. He wants us to be alone, and i know even then he will still be irritable and moody and depressed. When we go away he doesn't want to do much either, so it is never a holiday for me. I have needed a vacation alone for the past 4 years and it is not coming. I barely get to visit my Mom who is 45 minutes away, because he is jealous of anyone who takes me away from him (controlling). I go out for a few hours to get groceries and sometimes up to 6 hours. Before I put him on Phosphitydal-Serine, I couldn't leave him alone at all. His balance is not good, and I had to hide his medication. He is on the exelon patch, and sometimes refuses to take his meds, the patch, nor eat. He gets angry all the time and was like that before from the alcohol abuse. He no longer has that problem, though both that and the anger are untreated at best. I have no time to go to counselling at present, nor even get enough exercise. I have high cholesterol, am normal weight, though my body is not trim anymore. I don't look nor feel like I am almost 65, just the stress is killing me. My son was totally self-sufficient until 2007, had a good job, paid his rent, bills, bought a car on his own. He went off all his meds and was doing better for awhile, and going to the gym, now he sits on the computer, watches tv, or visits a friend or sleeps. Pretty pathetic. The older one is much more independent, though has no job, so needs help with$$ I am fed up with myself first of all, then with all these needy guys, I helped create by being there for them instead of taking care of myself 1st. Enough, I need some sleep, and my arms are tired from typing. Good luck Ranae, and I really liked the advice everyone gave, nice group of people. Butter fly
