Anticipatory Grief.

Dear Littletonway, I know just how you feel, I had been taking care of my Mother for years, and she got sicker just this year. I had to put her in Hospice on September 12,2012, and she passed on September 13,2012. I thought about what it would be like if she weren't here, and I even had time to prepare myself, because she was in the hospital for 4 weeks, but when the time actually came, I did'nt know what to do with myself. You see all of your time is devoted to this one person, you don't even have time for yourself, and then in a twinkling of an eye, it is over. I so miss my Mommy, and I am 54 years old and she was still my Mommy, all I can say to you is, do what you have to do, feel how you want to feel, and don't let anyone tell you how or how not to react, because in the end, what matters most, is that you did the best that you could do. And always remember, for now, just LOVE your Mom, tell her everday how much you Love an appriciate what she has done, because before you know it, she will one day leave, and all you will have is her memory, so make the memorable, and loving so you will have no regrets, like me. God Bless you and keep you, and I will be praying for you and your strength.

Thank you to all of you for sharing with me. It has helped me so much to get the input from such a group of special women who are so caring and loving. I feel deeply for the load you all carry. It is awful for you and all of us with this responsibility. It is so much harder for those who have had mothers that did not care for them when they were children and now they have this huge responsibility. My mother was a good mother, as most of you have expressed. I dont know what would be more or less painful but my gut feeling is we all have pain over this experience and it is so exhausting and the hardest thing we have had to do in our lives. This website is so amazing and helps me knowing I am not alone. I wish we could all just sit down and meet once a week.....but since we can't this provides that support. Especially in the middle of the night when the fears, worry, anger and frustration often surface. I don't know how to really show enough appreciation for all of you who openly sharing your true feelings. This sharing on this website provides a place we can say the things we truly feel without the feelings of guilt for what someone might judge us. What a gift that is.

I have now been gone for 4 days of our 10 day respite vacation on the coast of California. It has been more difficult then I thought it would be to let go and relax. I awake in the middle of the night in terror of leaving my mother without my visits to the NH. As I mentioned before I have hired cargivers to visit everyday. My sister was there for a couple of days, and I worried a lot less while she was there. When I talk to my mother by phone she often cries.....but she does try to put on a brave front. I am determined not to ruin this time with my husband but the feelings keep surfacing. I tell myself that this may be the last time we get away for a long time and I have to control my thoughts, but it is not easy to do. I am so blessed in more ways then not and I pray that I can focus on that instead. Your post help me so much and I just wish I could personally give all of you some relief from this difficult and challenging time. I send my love to each of you!

I can only tell you that after two caregiving experiences I am taking care of my own elder care needs by finding and joining a lifecare community while I can make the decisions. My children know my plans (and approve). I hope this will be a better solution for all of us.

Littletonway: Thank you for the hugs and the comment. To everyone who posts here, let me say I am thinking of you all.

LaylaOK - {{hugs}}. May all your happy memories soon bring you comfort.

Zanniegirl: My father died this past Wednesday, September12, 2012, of advanced dementia. My mother, husband, and I kept him at home and all three of us took care of him for over two years before we came to the realization that we could not give him adequate care anymore. We had to place him in a nursing home almost a year ago. He was incontinent, could not walk, and had absolutely no quality of life. My husband and I are both 59, and Mom is 78. We just got to the point where we could not bathe him, lift him, or get him to doctor's appointments. Sleep for the three of us was minimal, as Dad needed constant supervision to keep him from wandering. Putting him in the nursing home was the hardest decision we ever had to make.

Like you, we were in the nursing home every day to check on him. Our life still revolved around all his needs. Our grieving process for Dad started years ago, and as Mom said, "We lost him a year ago when the dementia started getting worse." About a week before Dad died, he refused to eat, drink, or take his medications. He became unresponsive to Mom, my husband, the nursing home staff, and me. He had an Advanced Directive, so there was no intervention. Death came on his terms. He's only been gone a few days, and we feel a sense of relief as well as sadness. I am thankful he is no longer in pain, no longer embarrassed by his incontinence, and no longer suffering from all the effects of dementia.

It's weird, however, because we are experiencing feelings of "What do we do now?" No nursing home visits, no dealing with Dad's situation, no constant worry about Dad, etc. You are not being selfish, Zanniegirl. Thinking about yourself and your husband and other family members is normal. Anticipatory grief is exactly what my family experienced, and believe it or not, it has made Dad's passing easier. I'll never forget my Dad, and now I have to look out for Mom. (She's still in good health.) However, my husband and I are looking forward to getting our lives back and doing the things in our retirement that we have planned. Don't be too hard on yourself. You've done the best you can, and that's all anyone can do!

Your anticipatory grief or fear of what happens next is very normal. Your love and care for your mother is wonderful and having an understanding husband is a blessing. But I think you will be able to pick up your life and find happiness in your marriage when you have more time to devote to each after your mother's passing.

In June my father passed at age 93. I was his sole caregiver and felt a big void in my life where my principal role was caregiver. Slowly, you deal a bit better with the loss, regain your footing and begin to find time for the simple pleasures of life which were on the back burner while you focused (understandably) on your caregiver duties.
Try not to worry, I think things will work out ok for everyone involved. Glad you took a few days to rest.

Hi Zanniegirl,
Please know you are not alone. Until my Dad died I didn't realize I was experiencing anticipatory grief. While I took him to chemo and doctors and cared for him at his home as he became weaker I felt like we were going to beat cancer and felt strong although I lost a lot of weight, couldn't swallow to eat or drink and slept every minute I was not with Dad. My family at home missed me but I was obsessed with saving Dad. It didn't work and the grief now is totally different,
I eat all the time can't sleep and cry daily whenever and where ever it hits me.
Back on antidepressants but after 5 months of taking care of Mom I think I have anticipatory grief for Mom on top of mourning my Dad dying. Do something really selfish for yourself at least once a week. It will feel wrong for a while but you will start to fit it in your routine and it may just save you sanity. Good luck

I am so glad to have found this site! It seems that all of us feel guilty about what we wanted for our lives prior to taking care of a loved one. I lost my mother in February 2011, I was with her in her room alone, my siblings went to get some rest. As I was known in my family as the "softy" I never thought that this was something I could handle...but God did. And then my gramma(moms mother) passed exactly 1yr later in Feb 2012, and a brother in May of 2012. We then started inhomecare for my mother-in-law in Aug.2012. I can't say I'm taking care of my parent because she is gone but I can say that my MIL is my mom now and we are trying to do what is best. She has a daughter that "can't be bothered with the careing of her mom" has not even come to see or even call her mom!! I take all the flack because I am the one with her the longest as her son(my husband) works to take care of our family as well as helps supplement his moms finances since the daughter nearly bankrupted her mom. So I understand your delemma and fears. Please know that sacrifices are what we all do "Those of us who have compassion and respect for all our parents did for us" and we will be rewarded one day for it. It isn't something we want to take place but know we are capable when we need to be! This site has afforded me lots of comfort and answers to my questions plus a way to aire my grievences and thoughts on all aspects of caretaking. Alone you are not but a good person you are!!! Don't forget that fact........... God bless your efforts

Dear Zanniegirl,
"The strain has been all consuming. I have anticipatory Grief and so fearful anticipating what my life will be like after my mother passes. Am interested to know what or if others have these same thoughts, or if I am totally selfish thinking such things." = you are NOT totally selfish, believe me you are NOT! What you have said here is exactly the way I feel and I too felt selfish in the past when I felt and still feel these things. I too fear what my life will be like after my Mom passes and fear how I will feel, fear where I must move to [we must sell the house after Mom passes], how will I be able to support myself, etc... My full time job is caring for my Mom who has dementia and terminal cancer. Dad passed several months ago and then Mom was diagnosed with this terminal illness and I have been taking care of them for 2 years already so it has become my full time job--my whole life. The double whammy of Dad passing and the almost immediate diagnosis of mom sent me over the edge and sis and bro and the hospice doctor said that I am the one who is not well also and if I do not get emotional help, I will end up in hospital. And yes, it is emotionally draining,very hurtful, and extremely difficult. So I know exactly how you feel. You are not alone. Anticapitory grief is very real. My Mom is now receiving in-home hospice care, and they send me packets of information and one of them is about this subject. When I read it, it blew my mind because it explained what I am going through, how I feel, when I couldn't myself put it into the proper words. Hospice provides the emotional support that I need. A bather comes in 3x a week, a SW whenever I need to vent, talk, cry, etc...The hospice doctor will come whenever I need him and a hospice RN comes in 2x a week to assess mom or more times if I feel Mom needs it. They prescribe all her meds and I pick them up at the pharmacy. Have you though of getting your Mom in-home hospice and hiring in-home CG if you want your Mom at home? Or even putting her in hospice is, I tell you, the greatest way for your Mom to get the greatest of care at end of life, love, and emotional support for you and your husband and your mother, of course. It sounds as if you love your mother very much, as I do my mom too, and its harder for those of us who have been closer to our parents than those who were not as close to their parents as children or young adults. It almost kills me [as it does to you too I would imagine] to watch Mom sleep and see her deterioration day in and day out--how frail she is, how much weight she has lost, etc... so I know how you feel. If she is at end of life, I suggest you put her in hospice. They have the medical skills and emotional/compassionate skills to deal with end of life issues for your mom and your husband and yourself; not like NH-who only come into the room to either bathe or put that plate of food in front of the patient, give meds, without any compassion or love of any kind. I've never heard of a NH that gives compassion and love, only very negative things. And they deserve that type of description--they earned it all by themselves.
If you can handle it emotionally and have the money to hire CG full time, you can still have mom at home during end of life. But if you cannot [as most people cannot] she sounds very eligible for hospice care. My Mom will most probably go to hospice care when things get very super serious with her and end of life is near. At first I was gung ho and pushed that she pass at home with my CG. But my doctors were more worried about me than mom because I am going through tremendous stress and burnout as you are. So now I am being realistic about it and will probably place mom in hospice towards the end. I am keeping her at home until I cannot take it any more and lose my mind.
Please keep hospice in mind, it will give you a great amount of relief knowing that she is loved and cared for by the loving staff that they have, instead of a cold, dispassionate NH. Hope this helps. Pray to the Lord for guidance, strength, and His Peace which transcends all human understanding. I will be praying for you Zanniegirl.
le faucon.

I have been grieving for my Mother since she moved in with us. Now I find myself grieving for my husband and I and the life we planned for retirement. My DH laughs and says "just look at all the extra money we will be leaving the kiddos".

This discussion really hits home with me. Makes me want to embrace all of you and have a good cry. Wish I had the answer for us. I know the responsibility and caregiving comes at a tremendous physical and emotional cost for most of us. It is a like a nasty secret you only discover after the fact. No martyr here!

God bless each and every one of you!

I can relate so much to all of these comments. My 86 year old Mom lives with my husband and me. First I moved her from her home and town to live in an independent apt in a retirement complex close to me. She felt isolated and lonely, even though I visited her and took her places every day, including bringing to her to our home for weekends, and many dinners. This got to be a huge strain, as her need to be "around family" had me running back and forth like a cab driver. The apt. was a 30 minute drive one way, and the traffic was always horrible. (I hadn't planned well with that first move.) I then moved her to a very nice place that was 5 minutes from me, thinking it would be handier. But, I soon realised that she wanted to be WITH us. She asked repeatedly if she could please come and live with us. I caved in (with husband's approval), and she moved in with us 3 years ago. She has her own space within our home (living room, bedroom, bathroom) but she always wants to be out in our part of the house with us. She follows me around everywhere. She doesn't have her own friends. She made no attempt to have friends at the complex, even though others made an attempt to befriend her. I realise that part of the problem is her memory and mind, and she can't remember who these people are, thus is facing strangers all the time. I realise a lot of things, but it doesn't make it any easier to deal with it. She was my best friend, too, as Cscstle mentioned. Now at times I feel she is such a pest. Then I feel GUILTY and terrible, because I know I respond with impatience and frustration at times. My own life has taken a sad back seat. My husband is immersed in work much of the time...his escape. I plan quick get-aways for us such as dinner, a movie, a golf game, etc., but Mom always asks why is it she can't go with us??? Even though I explain as you would to a child, "Mom and Dad need some ALONE time" she still reacts as though we are discarding her in the corner like an old piece of furniture. Then, again, the guilt comes to me, and is always lingering in the back of my mind trying to ruin my good time. My friends have been encouraging (almost nagging) me to put Mom in Assisted Living, but I know she would go downhill so quickly and be isolated and lonely, as she doesn't remember for 5 minutes what to do or where to go. And I would be like you, Zannie, running at least twice a day to where she was, and feeling guilty when I left, because I know for sure she would beg to come back home. I know how I am, and I would be consumed by guilt. I am the only one out of three siblings who can do anything for Mom, as the others live out of state, and can barely manage regular phone calls. "Out of sight, out of mind!!" It has turned me into a rather cynical person, I think. I feel rather grouchy most of the time, and really have to force myself to put on a cheery, smiley facade for the sake of everyone. Inside I don't feel cheery. I feel a bit hopeless, sad, and angry. I know it's not my sweet Mom's fault. It's no one's fault. It's just life. I get fed up with myself for feeling down, because others have it way worse. I think I need to get off the self-pity train, and count my blessings. Sigh......Good luck, Zannie, and all of you. We are in much the same boat, and it's helpful to know we are together in this battle, and can empathise with each other. All of my friends parents are dead or they have them somewhere, and rarely see them. They don't understand me at all. I sometimes think they're rather selfish, but maybe they are survivalists. :) (And I'm not a martyr.)

Hello Zannie! I totally get what you are saying and feeling! As much as I love my mother, I do long for my own life back! And at the same time-I don't know what I will do when she is gone-and that is a scary thought. At times, I wish that time would come sooner than later and then I feel guilty about feeling that way. But I think we all here on this site understand those feelings. And, I hope that all we have done for our loved one will override any guilt issues. Lord knows we have done sooooo much more than our siblings etc! All we can do is do our best for them and for ourselves. They will be gone one day and it would be nice to have some good life left in us to go have some fun! I know my mom would want that for me. Hang in there! Enjoy your husband and time away. Mame

Zanniegirl, I feel your pain. I too am having all the same feelings you are. I am caring for my mother, who lives with me. So, I get absolutely have no alone time. I depend alot on my friends. Family does not help. All I can do is go out to have dinner or work. I have to account for everything I do, hang with or talk to. I never got this kind of treatment growing up. I know its mainly because she has no social life. My mother has no desire to go out with her friends, unless I go along. I love my mom's friends, but its not what I want to do.
Im not here to say my life is worse. Im here to tell you, you are not alone. I think what we are really going through is, what I call, "the good child" syndrome. We are doing what we feel is the right thing to do. Our lives are put on hold to take care of someone who did the same thing for us. However, there was something I read the other day on this very site. Dont act out of FOG. Fear, Obligation or Guilt. It put a different outlook on things for me. Plus the fact, I have come to the conclusion. My mother has always been my best friend. My best friend has been gone for a long time. Therefore, I am taking care of what remains of my mother. Yes, the grieving is hard and getting harder.
May God be with you and you find peace on your travels.