I have been having overwhelming feelings of sadness from anticipatory grief and from what seems to be the withdrawal of my longtime friends.

I am in almost the same boat as you 1215. My mom is 77 and in late stage dementia. She's been living with me for almost one year. The feelings you are having are the same as I have had. We feel guilty, but they are normal feelings. Maybe you could join a local support group. I believe that nobody understands the caregivers journey more than other caregivers. I had no idea what a friend was going through while caregiving for her mother until I was placed in the same situation. It is a very hard job to do on our own. Even my sister (who I am very close to) has no idea what I go through on a daily basis. I hope you find some supportive friends soon...

Thank you everyone for your support! I am thankful that I have other caregivers on this site who understand! I so wish there was a caregivers support group here but the only thing that comes close I guess is a grief support group that I am thinking of going to next Thursday. Hopefully, it will help or perhaps I might meet others in my situation and start a group just for caregivers. We shall see.

We just got hospice for my Mom and they are wonderful. They are the ones who hooked me up with a local caregivers support group. If you can't find anything in your area, how about taking a class to learn a new hobby like sewing, quilting, crafting. You would make new friends and learn a new hobby. Good luck and God bless...

First of all: You are not "terrible" for wanting it over with. You are human. You love him, but you've been watching this long, slow death forever. Your friends have stopped coming around because you've been so wrapped up in caregiving. Unfortunately, this is common.

You will miss him when he's gone. You will grieve. But you are grieving his eventual passing now, as well as grieving your former life. Your life will be slow to come back but please keep making advances. As former friends (if you want them) or new friends learn you are available, you will find your life slowly become more normal. Meanwhile, a support group is a good idea.

Please, please everyone. If you have every watched this long slow death and just wanted it over, you are not bad. You are human. You are compassionate toward your loved one who is suffering, and toward yourself. Don't sink into guilt over human thoughts.

Take care of yourself and do keep trying. Maybe you'll find some new friends at the gym.
Carol

hi 1215,
I can so relate to you. My mom in law moved in with us just over a year ago and just as our grown children were moving away. I had looked forward to travel time with my husband and starting my own new career that I had looked forward to for some time. I had NO idea how involved I would have to become in the caregiving with her. She is 83 and mid-stage AD. No one understands, even my own family does not really know what the day to day 5 day a week job is like. My sister in law commented to me the other day that she has to do her shopping on one of the two days that she has her mother and it's a nightmare. I said "tell me about it!" she said, "oh no, YOU have no idea!" and I said, "oh YES I do!" and she said, "yeah, but I have to work all week and then deal with her too!" Can you imagine? At that point, I totally knew that she felt that my caring for her mom all week was not considered a "job" in her mind. It really makes you feel isolated and without hope. There are lots of AD sites on Facebook where you can relate to others and talk in a forum such as this one, but truthfully, I believe that the only way to get back to normal is to get outside help for the caregiving. My MIL's attorney wants to look into assisted living so that we can return to normal as a family within 6 months. I dont think this is going to go over well with her but the reason she lives with us is because I have been so against nursing care. But ALF's really offer interaction and activities for them that I really can't provide and she may have more fun there. As her disease progresses, they have professionals to handle that whereas I am not a nurse and may not be as helpful or knowledgeable. If income/money is an issue, I have learned there are many ways to seek funding an a good Elder Care Atty can help with that. Look into it. You do need your life back. You have to look at it as you are doing your dad a favor by re-connecting him to others like himself and allowing him that social interaction as well. keep in touch :)

Wow, I just went to your link, Shiela T, and it's beautiful! Thank you for sharing it, and for sharing some of your thoughts.

I love Carol's post. You are truly an encourager!

My heart goes out to 1215, marylee, and others. Caregiving is not for sissies!

Take care, all.

Hi 1215,

When I read your post, I felt that I could have wrote it. My mom is almost 97 and has been living with me for the last 3 years. I am an only so I get to be the only caregiver......lucky me.
I feel exactly as you do about everything...saddness, anger, wanting my life back, etc. I always feel guilty about those feelings but they say it is normal. I forgot what normal is.I feel that when something good is happening in my life she steals all my enjoyment.
Next weekend my mom is going to respite for 3 days. We have a family wedding out of town so she has to go there. She says she doesn't mind but she really does not want to go. She keeps saying that she would never live there and that she is only going because she has to. The ALF said she might like it and want to stay. They don't know her the way we do. She will tell them it is a nice place but will call me every minute to ask when I am coming to get her. I still feel that something will happen and we won't be able to get away.
I let you know if it works out.
I also tired to find a support group in my area. Found one and went once. The counsler wasn't very supportive.......just told me to send her to daycare/nursing home. Told her that was not an option. She wasn't too helpful after that.
Thank God for this site........just to know that we are not alone helps me get thru the day sometimes.
I just keep praying that this ends soon(she does have chronic pain)........I think my mom will bury me first!!!!
onenandonly

We did have an interesting development today. Our social worker and nurse have another caregiver who has been taking care of her mom for twenty years!!!! Oh my! My dad and her mom are the same age, 96, and we are talking about getting all parties together at the Red Lobster. So, this might just be the beginning of a caregivers support group for me as they tell me there are others who are feeling the same and thinking they are alone. I certainly would be happy to host my home for some new friends! I have always been an encourager in the past and perhaps this will be a new direction for me where I can be helping others as well as myself. Thanks you all for your caring suggestions and help! We also found out today that we will be able to get five days respite care paid for and will take this in October to go to the mountains in Asheville!! Whoopie!!

Dear oneandonly, and 1215. To one: hugs for you, precious Caregiver. Hope is all works out. No sense dreading what hasn't happened yet. Just dealing with the day to day is bad enough. Something bad may happen, but it also may not. I understand not wanting to get hope too high, only to be disappointed. I'm sure you have had them dashed before. We can pray your plans work out.

And to 1215: Congratulations! Happy dining! Hope it meets your needs and the desires of your heart. You're a great encourager to others. And, whoo hoo! on the upcoming vacation, too. Sounds dreamy.

Well I am glad to hear that it isn't just me losing friends. My daddy had an episode at Christmas time that was sudden and is now diagnosed as vascular dementia. I have become so involved with his financial situation as well as the nursing home that there just isn't time for me. When I do find time to go out and call a friend, they agree to go but don't show up. I have decided they are not really friends and dismissed them. There is no since wasting time worrying about them. There will be time for new friends but now I must take care of my daddy.

It is very important to have some kind of life for yourself because some day cargiving will end even though you are sure you will go first due to all the stress even if it is taking a short walk around your yard-I am glad I did because less than 2 months ago my husband passed away and I already had activities the main one making lap robes thay our senior center donates to nursing homes and hospitals which I could do at home and if I had not had interest outside of the home it would be more difficult for me now and joining a support group is helpful I became good friends with a lady there years ago and even when she left the group after her husband died we remained friends and even after she moved away we keep in touch, also this site in so great it is a good place to express your feelings and others understand what ever you are going through.

Anticipatory grief can be very painful and the apparent withdrawal of friends, perhaps because they don't know how to help or what to say isn't an easy experience. Therese A. Rando wrote a great deal about ancipatory grief. The following is paraphrased from her book Grief, Dying, and Death: Clinical Interventions for Caregivers. Dr Rando states that anticipatory grief can be characterized by ambivalence and that ambivalence is one of the most significant differences between anticipatory grief and grief following death. Anticipatory grief is a normal normal experience and can either be helpful or harmful depending upon the length of the grief according to Dr. Rando. A hospice counselor or social worker may be able to provide some help for you in dealing with conflicting feelings. I hope this helps.

Thank you all so much! I am interested in that book Grief, dying, and death by Therese A. Rando. Thank you LoisW; I will have to get that one!! I am talking to the hospice counselor about this. No one has ever mentioned the ambivalence, but that certainly nails it as that is exactly the feeling accompanied by the grief. I have read a book All our losses, all our griefs which is a resource for pastoral care by Kenneth Mitchell and Herbert Anderson; however, the one you mentioned speaks to caregivers specifically so I am going to definitely read that.... thank you so much!!

1215, I agree wholeheartedly with Carol, that your feelings are normal. You are not superhuman. We all have our upper limits in various life situations in which we find ourselves, and you reasonably sound frustrated that your life feels as if it is going nowhere, and, neither is your 97-year old Dad. Of course, you want him to live, and, you also want to enjoy your life before you run out of precious time in your life. We want our cake and we want to eat it too. Nothing wrong with our internal conflict!

One thing that caregiving does is to help a caregiver like you and me recognize how time flies, even as the support we provide sometimes seems to be occuring in slow motion. Nothing lasts forever, though. Today, I am happy to be able to see my Mom's face every day. She has always been my best friend, even at 84.

I am fully understanding your situation about greater distance between you and your friends. It happens to many of us caregivers, for various reasons.

In my situation, I am only too happy for a social breather from too many evenings out, too many happy hours, just schedule overload when all I really needed was to slow down in order to become a better caregiver. In my case, I would say that caregiving has taught me that I prefer moments of simplicity and more, rather than less solitude and reflection, instead of the social rat race.

I have gladly chosen to refocus and created new friends in my community, and, enjoy morning coffee visits now and then with my new friends, including neighbors I never got to know when I was always either going to work, or working too late. I increasingly turn down the requests to meet for happy hours, lunch, etc., but that's just me. My heart and Spirit are now in a different place because I recognize that life is short and I don't want a full schedule; just a contented Spirit and simply abundant days.

If your former friends have since moved on, is there anyone in your community you might be able to introduce yourself to over a cup of coffee in your garden, maybe? I am not a church-goer, but if you are, if your husband stays home with your Dad every other Sunday, allowing you to go to your church, or visiting a new church may be a way to connect to others real-time, as much, or as little as you wish. Or, how about a concert, or inviting a neighbor to a play, or for ice cream, or for a drive?

It depends on how much and how badly you wish to reconnect.

Another thing you may wish to consider is hosting a mid-morning coffee get-together with a couple of your neighbors in your garden? I am all for coffee minutes these days, and, hot tea, or iced tea, only because I do not choose to spend my precious moments of respite preparing complex meals and elaborate place settings, etc. Coffee and end-of-workday wine get-togethers on my deck require no preparation on my part, just getting comfortably dressed.

How much socializing are you wanting to do? Maybe host a movie night with popcorn and soft drinks only? Once a month? Every 2 weeks? There are always things to do; just depends on scale and scope of what you want, and, how involved you wish to become. Also, look for local charity events if you are wanting more, rather than less social visibility. I choose less. Hope my musings help. You are not stuck. You just have to think outside-the-box. Hope you get to restoring your sense of social balance really soon! Hugs to you and your beloved Dad!

Wonderful suggestions for social time without a lot of work, CGL. I've never been a social person and haven't ever really liked huge gatherings, but a good friend or two with some popcorn and some iced tea is a great idea. Much depends on whether or not this can give the respite a person needs or if they need to get out of the house, of course. But, it's a start.
Carol

My mom is 88 and I feel such sadness seeing her age and I live with her also which is difficult to be here 24/7. I love her very much but my heart is breaking because I am grieving also. I miss the Mom who was vibrant and active and now she is very tired and sleeps a lot and this distresses me. I am fearful of losing her and need to appreciate the time I have but it is very hard,

Hello september 21, I feel your pain. I have recently gone through this and it is difficult to make peace with the fact that I am losing my dad and the gradual decline that has taken place over the seven years I have had him in our home. Get as much help as you can. I recently brought in hospice as they will come up to two years before, and they have been wonderful. I have an aide, nurse, chaplain, and social worker. It really helps to know I am not going through this alone. I am not one to take meds, but I have just started taking lexapro 5 mg, a very small dose, but I find it really has taken the edge off. I now have more energy and can let things go without spinning my wheels as I was doing. My husband and I have a sitter so we can get away during the week days. We really have to take care of ourselves as well. I spend as much quality time with dad as I can doing the things he enjoys such as my husband and I going to Beaufort tomorrow to get crabs and we have a sitter for the day. We are from MD so my father always had crabs for July 4th and labor day. My husband and I are planning a trip to MD as we have to have a life as well and I so trust my sitters and hospice in order to be able to do this. Being a Christian really helps me as I know dad will be in a safe place when God calls him home. So, take heart and know you are doing the best that you can, but PLEASE take care of yourself as well.

i know the feeling , i always pray and ask the lord to take my 86 yrs old father . sounds terrible to say that but honestly why let this man sit here and suffer , he cries i dont feel good . i hurt all over . makes me sad to see dad suffering and all i can do is make sure hes comfertable .
as for friends , they call and comes and vist me when they can, and its too bad i could never go to thier house and have a good time . i thought it was just a matter of time he be on his way out , well its been almost 3 years now , i honestly think he s going to live many more years . lol .. thats ok whatever dear good ole lord has plans for me i shall go down that path . wink

I read here, and listen to so many others say, "I feel terrible feeling this way," when they are watching suffering, and hope and pray the person can finally let go and die. I reapeat what I've said before only because most of us need to hear it often: you are not bad for having these thoughts. You are a caring and compassionate human being.

Give the most comforting care you can to your loved one and also to yourself.

Carol

I am a caregiver to my mom who is 88. I hate seeing her decline and it causes me sadness. I have spoken to a few counselors which have not helped. I have one sister and 3 brothers who do not understand what I am feeling about her aging. They see her once every few months and are not concerned about her because I am here with her and they have their own lives. They tell me to focus on the positive but of course they do not live with her nor face her aging on a daily basis. She is becoming more frail and it is difficult for her to walk sometimes and I worry about what lies ahead. Many of her sisters lived into their 90's and if I am having a hard time with her being 88 - how can I handle her getting older?

september21,,dont worry about what your brothers and sister thinks . just do what you can do , if ure a caretaker then nobody on the outside of the family can understand whats going on daily like you do . just do what you can and enjoy helping your mother live , happy , feel the love . she respects you very much . shes at home to her daughter that looks after her . it means the world to her .
bless your heart .
dont worry about ur siblings .

I'm sorry you are having such a rough time with this, but just because your siblings are not struggling doesn't mean you are alone. Many people go through what you are going through. You love your mom and don't want to lose her. That is natural.

You are compassionate and caring. Some people are just more sensitive than others. Acceptance is key here, as no amount of worrying will change it. It may sound trite, but if you try to concentrate on the blessing of having her this long, and look at how well she's done up to this point, it may help. Then, know you'll be there for her as she gets more frail. When she is worn out, she'll probably be ready to go and you may find it easier to let go of her at that point. You will still feel the pain, but knowing she's lived a long life will help you cope, and you won’t want to see her suffer
Carol