Caregiver Confessions: When You Feel You've Lost Your Purpose After Caregiving Ends

I was beginning to think that my lovely wife and I wouldn't have another Christmas together , but now it is very possible,,Every day I say to myself ( whilst looking at her ) " hang in there Darling" ..I have started to equate the whole thing as the same as running a marathon where, although the distance is 26 miles, the race doesn't really start until after the 20 miles marker,,,and then the struggle begins,,I am at about that point ...The carers from the Hospice have become the water stations along the route and thereby giving me a bit of respite for the next couple of miles. I asked one of the visiting nurses what the path was that we are now taking and what could I expect ( so I could make a plan or two ),,,,She said very kindly "Whatever your own gut feeling is, that is what will occur,,every patient is different, so we cant give you an accurate time-line",,,I wish all of you Blessed people a Very Merry Christmas and hope things are easier for you in the New Year....Pink Gin

I want to wish all my caretaker friends a very Merry Christmas and a Happy New Year..may God watch over us in these so tought times. God Bless

The topics that each video addressed where so right on to what I am encountering right now. And since I amj still a caregiver it gives me some insight as to what is comming next and some advise on how to handle it and maintain "my-self" Thank you alll for caring..

Don't beat yourself up. The guilt will eat you up and spit you out. Could''a, should'a,s don't help either. You will always be needed, though the loved one may be gone, others can benifit by your experiences. Continue to reach out and others will reach back... Hugs to you!

It is only two weeks have passed since our last visit to Margaret's Neurologist, In that time, my life has changed for ever..I have been her sole carer now for almost 50 years ( but only a short time with her health problems ),,The Doctor told me she was on a quick downward spiral ( also discovered she now has a skin cancer problem on her face ),,seems now that maybe treatment is out of the question, He wrote an order for Hospice Care and these people are fantastic and seem to care more than I ever could ( Physically )..I immediately beat myself up, thinking I was useless and no longer needed, but the Hospice folks reassured me that I was indeed wanted.When the " End of life " comes, I am sure I will go through many more self-guilt emotions and hope I can still belong to this forum for some kindness and consideration,,,BUT right now, I feel really awful and isolated...Shame on me for being this way ...I should SNAP OUT OF IT....love you all....P.G

Petrin 56 Good on you, my feelings entirely, no separation after so much life together! I have taken a mortgage at my age just to have help to keep going, this my family fully endorse so their Dad can be happy and well cared for. We need two people 3 times daily for the transfers from commode etc. but this puts him into routine which works really well and keeps him without agitation. I feel my husband's working life is now rewarded.

My folks have been together for 64 years, and if I have just one breath left in me they will never be apart, in someone elses care where they can't be together. They will need different care and that will seperate them. NOT GOING TO HAPPEN ON MY WATCH. I have already spent most of my life savings to keep us all together and will die keeping them home with me, where they belong.

Mary Goodriend, I totally agree with you, I have been with my husband 60yrs and am never going to give up on caring for him. He deserves this with the love we have for each other, what else would I do with my life to give me such pleasure and satisfaction even though we wouldn't have wished for this Alzheimers ending. Thankyou for being a like minded carer.

Thank you for the ideas on how to move on. When you are in the situtation sometimes what needs to be done or how to go forward is clouded because of the current emotion.

Information in the formate of video and sound is better than written material. I could not see captions with video.

I never realized how burned out I already am. I could relate to all of it. I had a chance to let go for the first time in over 2 years plus. This journey is a tough road. I try to convince myself that the precious moments the I have had along the way will sustain me. I will cherrish them but they can't and don't sustain me enough to go on. I will continue on the journey knowing that Mom and Dad would be proud of what I am doing. Going though this with one parent is difficult at best, but having both parents in different stages has it's own challanges. I will accept any and all prayers and advise. Roger

I am new to the site, so much information that I can relate to, my situation is that when my husband retired we moved to jupiter fl. he was diognosed with Alzheimers, the journey began we are a young couple in our 60's as far as we were concerned life was just starting, This is our 2nd marriage I have two girls and he has four children, I was there for his children most of their lives, and now that there father has Alzheimers, they hardly call to try to support me in any way, I wrote them about this matter I got no response. I love where I live and I feel forced to go back to NY so at least I will to close to my friends and family I sure can use the support, like someone said people just move away from you. but your old friends will stay close, this disease really takes the wind out of your sails...so glad I found this site sorry for being so winded. Thank you for listening to me!!!!!!

Giving ideas on what to do next. Most of us going through this has no ideas of what to expect next or what to do next. Reconnecting is an excellent suggestion. I lost seeing mine and my wife's friends while caring for my wife who had dementia and actually I am tired of sitting at home doing nothing and trying to keep of getting depressed. Thanks again for the suggestions

This is a very helpful program. Is it available in just one single video? I'm starting a group at my church and this would be a very good teaching tool..

Frequently you need help and you don't know where or to whom you should turn to for information. This mini-series easily points you in the right direction. It tells you that you are not alone or that your thoughts are normal. It helps with some of the answers, or points you toward a information source. Thank you.

I cannot understand why old good friends seem to melt away with their absence. "I prefer to remember him how he was". How selfish and unsupportive is that even to the caregiver. What you thought were true friends dissappear. This has made me very bitter and wanting only a private funeral as these hipocritical "friends" only need to be seen in the right place. In my opinion the right place was being supportive during the long lonely stages of Alzheimers.

Mainly the issues regarding guilt, lose of temper, anticipatory grief and after caregiving ends.

I,dearly,loved,and cared for My husband,of 21years,and,altho there continues to be a huge void in the center of my heart,since his passing,I want you to know that I wouldn't have missed this part of my life,for anything.if any of you have an opportunity to love,and care for,a dear one,until lifes humble end,do it......take it from me.....you will be glad you did.....you will,also have a lifetime of cherished memories,to carry you,through the rest of your life.mrs Mary Goodfriend

All the feelings the caregiver goes through. Unless you've been there you cannot imagine what it feels like.

Yes, I've been there more than once. First it was my mom (and my aunt) who came to live with me. I made the living room a bedroom for her but she was afraid at night so I sat in a chair all night and slept when I could. When she passed away my aunt became my house mate. She wouldn't eat all day so when I got home from work she would have many things on the table such as: Egg salad, tuna salad, pasta, pork chops with mashed potatoes and gravy. I gained 30 pounds that next year and I was so angry I didn't know where or how to vent. Finally my niece took her in and after about a year Alzheimer's set in so decisions had to be made regarding her care. She went from Assisted Living to full care. Then, four years ago my 43 year old niece had a massive stroke due to a major bleed in the brain. This left her paralyzed on the right side and speechless. I became her caregiver and had to make all decisions regarding her health, finances and her home and animals. After almost 3 years of caring for her life I became her slave. No matter what I did it wasn't good enough or fast enough, etc.. I began suffering from physical and mental health (I might add that I'm in my 60's and work 50 hours a week as well). This story has many more chapters but the bottom line is this: I was blamed by my niece, who was like a daughter to me, for stealing her money and many other things. The last straw was when she threw something at me after showing me her calendar that she used to "X" out the days on. I used to visit 3x's a week but she'd mess up her calendar and no matter how I explained things she wouldn't listen. I even brought spreadsheets for her to see where the money had gone. So, to preserve my own health I stopped having any contact with her and after 2 years I'm finally back to where I should be. She has alienated my son as well so he doesn't visit either. As far as I know she has pushed everyone who has cared about her away and is now alone. Maybe that's the way she wants it but I cannot go back to that and won't go back.

We were a family of 8 siblings....plenty of people to care for our ill mother, plus a few daughter-in-laws that were willing and able who assisted in her care. Everyone did handle the care differently...denial, anger, resentment. It was also interesting to watch a few who hated the whole experience and complained to others constantly, take all the credit for everything good that happened. All of a sudden, they did it all, decided it all, were model children to their dying parent! ha. I came out of the experience feeling good with how we responded and cared for her. I do regret giving up our home care situation and placing her in 'a home'.....it was truly awful, no matter how you viewed it! God bless those who care for their parents.

i am currently on the path that gibbons has concluded and there are many parallels in how we feel and react to this tough seemingly unending situation. anger, frustration and fatigue are common. i used to think that the end will bring relief to me because my mother is free from her agony and for me the freedom to pick up my life again. i am surprised and also thankful that gibbons has opened my eyes to the feeling a loss of sense of purpose that follows the death of the loved one. i think it will help me to be prepared.thanks leeza.

Comforting to know others are dealing with all these negative emotions. Even gorgeous, wealthy celebrities. Maybe now I can cut myself a little slack for feeling so resentful.