Just wonder if anyone deals with pre-death anxiety of a loved one?

I'm sorry to hear of your mom's decline. I can't imagine how hard it is to prepare for that kind of loss. I have been trying to deal with my cousin's decline and thought that I had some time ago, but, her recent decline has awakened new anxiety about her fate. I thought I was prepared, but, not really. I've mourned the loss of who she was, since that left some time ago, but, her body is still there. Dementia is so cruel.

Your profile says that she has dementia. Are you caring for her in her home? Do you have help?

I don't think we call really prepare, but there are a few things that might help. If you mother wants to and you can prepare what she wants done with her remains, what sort of service, memorial, etc she wants, you will at least not be trying to guess what do you in your first grief. The question about where to live may not be clear until after you are alone. If you can, take time--trying living somewhere else for a day or two--a friend's empty apartment, a bed and breakfast, whatever you can manage and see how you feel there a year or so after her death. There will be a huge void--the the time you spent with her. You might want to look into ways of filling that--and doing something like volunteering, joining a class, taking up a hobby won't mean that you aren't grieving or trying to forget her, just that your life will keep going as it does for all of us. I hope this helps.

Dear Kelly,

I am so sorry to hear about your mom's condition. I have to agree with meallen, I don't think any of us can ever really prepare for that final moment when our parent's pass. I know I was in denial myself. I never thought my dad would die. Even before his decline we had bought a burial plot, prepared a will and I had handled some other paperwork for him. When he had a stroke, I still thought I could fix him and he would get better and return to his old life. He suffered another heart attack and the doctor told me he had 6 months but he ended up passing 3 days later. It was the worst day of my life. I didn't know how raw I would be, I just didn't. It wasn't real till that moment the doctor told me and I still didn't want to believe it.

One year after his passing, I am struggling the decision to keep the house or buy a new home and start over. Quite honestly most days I don't feel like doing much, so maybe I need more time to make that decision.

I hope you will cherish this time with your mom. And do what you can for her. And maybe try to settle some of the details, but in the end, I really feel there is no preparation for that moment.

I agree with others that we're never ready for this, with my sympathies to you with everything you're going through.
You're jumping in to a set of unknowns in the future and most are out of your control. At this moment you can't estimate how you will feel once she passes.
Some issues you do have some control over is what others have said - talk with her now of her wishes for her burial, and does she wish for a service, and what kind?
- if I could suggest attempting to write her obituary or at least notes to go from, now--
- if you are in charge of paperwork, as in the necessary places that will need contact after like banks, pensions etc
HARSH, yes but it may help for your peace of mind afterward-- not searching for papers, or being upset while you have to review her life on paper for the notice.
For now, I found that this time is for sharing your love for them, with them. The time for laughing about the old stories. Playing her favourite music for her. Contacting her friends for a phone call or an actual visit. Asking and telling her everything you can... have found no matter how much time I had with my Mom, the week after her death I have so many questions. We spent so much time together over many years and I've found since her passing I still have questions I know will be forever unanswered. Stuff like which Aunt in England sent her those beautiful doilies decades ago? What was her parents' favourite saying?
I'm sorry your Mom also has dementia... I guess its what questions she'll still have answers to...
Its so hard. So very, very hard.

I agree with everyone in regards to never being "prepared". My mother and I are very, very close and I'm her caregiver. I have so much anxiety that most of the time I can't even sleep...but a lot of it is worrying about her. I'm a single mother, so I don't really have anyone to turn to for support. Yes... I have family, but their very dysfunctional, so I can't rely on any of them.

My husband and I have been dealing with that anxiety for about 18 months now. His mother, my MIL, has been in complete kidney failure and on dialysis three times a week for that time frame. She has Narcissistic Personality Disorder and what the SW told us was also Dementia. She cut me, and several other family members, out of her life during that time. The anxiety for my husband has been different for him than for me, but bad anxiety none the less. We spend alot of time in prayer and our church, like many, offers the Grief Share program. My husband is probably going to need to attend that when the time finally comes. I will attend it with him. The Bible verses and materials can be searched online, as well as where the program is available in your area. This is probably my MIL's last Thanksgiving/Christmas. One of the other family members she had cut out of her life suddenly passed away before Thanksgiving and she decided to let me come around again. We are trying to make the best of it.

Yes. I found it so worrisome. Will I be there? What do I do? I had hospice involved and it was a big relief for preparation of my mom's passing. It also helped to make sure all affairs are in order. So sorry you are going through this, take care of yourself.

I am going through the same thing Mom is 95,,, forgets , trips falls,, about moving to another house but my dad bought this one,, it will be better for her to stay where she knows,, at least that is what I think,,,as long as money situation stays ok,,, I right now refuse to put her in a home I feel she will give up within 2 days,,,it is very hard,,

Kelly -- You will be glad if you follow through on your thought of needing more time to make a decision about whether to keep the house or buy a new home. I suggest living in the house for a while after your mother passes until you get a strong feeling of whether you want to continue living there. In the short run, it offers the advantage of not having to run back and forth to go through the contents of the house and settle the estate. Since you think she may have only six months left, call hospice and find out whether your mother is eligible for home hospice if you want to continue caring for her at home, or if she she is eligible for living in a hospice facility. I say this based on my experience with the deaths of my parents and husbands. I found hospice very supportive in all areas and especially in preparing for grief. After my second parent died, it hit me hard to come to terms with being an orphan. Those who responded here before me gave you excellent advice. Read through it again. Peace.

I had awful pre death anxiety over my Dad dying. There are a few things now that I wish I would have done to help me with the impending loss. Write down all she says about family and ancestors, I have recorded her speaking about all the items she has at home, even a dish has some precious memories attached, i did this before her dementia took hold but you can do this before. I have a hypnotherapy mp3 on losing parents and anxiety etc, it definately helps. Go to a herbalist or naturopath and they are amazing at what they can do to help you. My herbalist gave me some lovely tea and if I felt it was all too much I would have a cup and feel a lot better. Look after yourself, see your friends as you will have them around when the day comes. Be busy, I did something every day after my Dad died, I saw someone, had tea, went for a walk with someone, I put memories in front of the day, however hard it was I did it and it really helped. Talk to your doctor, see a counsellor. My Mum is 93 with dementia, its awful but I see my friends and I bought a dog a few years ago so I have made new dog walking friends and it gets me outside and being in the moment. I wish you luck, big hugs x

My mom has been so out of it for so many years now and truly never talked much about herself anyway. She always had a hard time with the simplest of decision making, and I've had to make nearly all simple and major decisions for her since dad died in 2003. I'm tired. My hair is more grey than hers is, and I'm told often how much I look like her, which to me is not a compliment, lol. She truly has never acknowledged the Alzheimer's. I know she loves me, but as the oldest child, I can remember clear back to childhood always feeling burdened concerning my mom. I will miss her when she's gone, but any anxiety I feel right now is in regard to dealing with her paperwork and finances, even with having a lawyer in place. I thank God nightly she's in a decent nursing home. I anticipate feeling mostly relief after she passes, sad to say, and that I will no longer feel in limbo and maybe can take a little vacation. So not anxiety, really more sadness and regret that I've never been able to get to know her well.

I'm dealing with that right now. Mom is in the late stages of dementia and my sisters and I cared for her at home for 6 years. She has had home Hospice since April. Four weeks ago today we had to place her in a skilled nursing facility as her needs were more than we could provide. That truly was one of the hardest days of my life. It wasn't a feeling of guilt, but of sadness that her health had deteriorated to that point. She hasn't known that we are her children for about 18 months. We are familiar faces to her. Although she is in a nice facility, it is a major adjustment for us, as they do not have the staff to care for her like we did. Her health continues to decline, and not sure she will make it to Christmas. She knows something is different, but doesn't understand where she is. Some things you have to let go, like if her hair is tidy. We kept her immaculate in her dress. Her outfit might not match, etc. But she is kept safe, and that's what's important. However, one issue, she eats so slow, and they don't have the time at her pace, so one of us tries to be there at meal times. As far as preparation, years ago Mom had taken care of the major pre-need burial items (casket, vault, etc), but in recent weeks we have made the remaining pre-need arrangements, like casket spray, cost of engraving death date on headstone, even the gratuities for minister, musician, soloist. I have been grieving the loss of my mom, the real person she is, during these 6 years of declining health from dementia, and it has been heart wrenching. With that said, I don't think I can prepare myself emotionally when she takes her last breath. But what I do know, and find peace in, is the fact she has lived a good life prior to her illness, she is a wonderful Christian and mom, and I know in Heaven she will be free from this demented body. Then I too will be at peace, and know she & dad are happily together again.

What beautiful and heartfelt responses to this question. When reading the answer from cdnreader,, I sat at my computer and cried. It's as though this beautiful woman melted within every emotional cord of my body. Pre-death anxiety of a loved one grips us and never seems to let go. My husband has Alzheimer's for 11 years. His decline had been gradual over the years, however, recently he has taken a sudden and expected turn for the worst. I, too, don't know what to do. I walk around most days in a fog only doing what needs done. Dishes piled in the sink, clothes hamper full, bills paid, but paid the last day when due---nothing seems important. The closest relative lives 8 hours away. I keep telling myself even after 11 years my husband will be okay. I toss and turn all night worrying, wondering what the next day will bring. Even though we have a Will, I shun contacting an attorney for upgrades. I can't let go. The world goes by each day like a spinning top unaware of the suffering and hoping. Nothing seems final, there is no hope, only unrealistic expectations that will never be. I sit in the nursing home every day holding my husband's hand, looking at his face, searching for answers, even excuses---waiting if I will be fortunate to catch a glimpse of a smile, an acknowledgment of any sort. I play Big Band music, the songs of Frank Sinatra, Dean Martin, Nat King Cole, Tony Bennett and others very softly knowing how much he loved to listen to the songs of the 50's. Anything, everything. Kelly, all I can say is visit your mom and love her with all your heart. God calls all of us home some day. It's those that are left behind that must live with their memories, their conscience knowing we have done all we could do. As far as purchasing a new home...I wouldn't advise it. Please don't run from memories. There will hopefully come a time in your life when acceptance will allow for emotional healing. A time when viable and less stressful decisions can be made. God bless you, God bless all caregivers and loved ones. The hidden and emotional paths we travel are so difficult. There are days we can't even find the path we are to be on....

I’m going through this now with my dad. Final stage of dementia. Big weight loss, little appetite, sleeping more. Not sure how much time he has left most likely weeks. Been procrastinating about funeral arrangements as he does not live in his hometown any more. I will be sad but relieved when his journey is over as I’m sure this is not how he imagined his later years would be. He has been in hospice since May and his assisted living residence is amazing and I’m grateful for all they do for dad.

I tend to think of a demented parent (or any demented person) as just being a shell of his/her former self. The person I knew is essentially gone, and the body is just waiting to shut down like a plant still alive in a vegetable garden in late autumn. When my mother would ask "why did Dad [i.e., her husband, my father] die?", I would simply tell her everyone, especially an older person, eventually does. I've explained to others that he lived "past his 'expiration' or 'sell-by' date". It's tragic when a younger person dies, especially if unexpectedly; when an old person dies it's basically nature's plan and then life for the still-living goes on. Perhaps some people would think I'm too detached and clinical even with deaths in my own family but people are all different.

My mom with dementia lives with me. Her doctor found 25 white spots on her lungs and recommended we do nothing because next steps would be invasive. At night, I am obsessive about watching the monitor, which once provided relief. I am scared of the moment I find her gone. That moment may be close or far, who knows. God, give us strength to do this!

I am sorry to hear of your Mother's decline. My Mother passed away two weeks ago. I tried to be prepared as she was in memory care for the last three+ years. But one week she was up and walking with assistance and the next week gone. Let me just say as others have, you will not be prepared. One thing that has really helped me was having prearranged final arrangements a while ago. Have a funeral home selected, draft an obit, burial plot, etc. Because when she passes you will be in a fog. Having these things predetermined has helped me more that I can tell you. My suggestion is to not plan on making any major life changes until after she passes and you have time to grieve. Don't add more stress to your life at this point. I hope this information helps you. I wish for you and your Mother a swift and peaceful ending. Warmest blessing to you during this process.

My mother died two years ago at 98, three weeks after suffering a stroke. She was in Nursing Care, but I was with her every day. What helped me the most at the time of her death was the feeling that I had done everything I possibly could have for her, but beyond that, I had all her final wishes, important papers, list of what I needed to do ( get Death Certificate copies, notify banks and her insurance, etc.) so I had a plan and a purpose for the empty days immediately following her death. Her cremation expenses had been prepaid, everything was pretty much arranged. I took comfort in knowing that I could fulfill these last tasks for her just as she wished. The dying teach us that life is for living and it is precious. When a loved one passes, there is an opportunity to begin your own life anew and do many things that caring for, and worrying about them made difficult. If you think about it, this is what your loved one would want you to do: go forward with a happy and meaningful life!

It is soooo hard watching a loved one slowly die. If I have any advice, it's that no one knows when the end will come. My husband has been under the care of hospice for a year and a half now. Every time he has a down turn, I grieve all over again. I wish I had spent the last year and a half enjoying our time together rather than grieving.

I think everyone must experience some kind of "pre-grief"--after all, we are all mortal and we will all die, someday.

For me, knowing that this life is but a brief (but important!) period of time in our eternal existence, knowing that my loved ones who have passed are still existing, on another plane..this all brings me a great deal of comfort. My daddy passed 13 years ago, and I often feel his presence when I am down or sad. Also my grandmother, who has been gone over 25 years.

Mother isn't doing well. She has a cold right now, but a cold for her almost always turns into pneumonia, and driving home from her place the other day, I had the overwhelming feeling that we aren't going to have her around a lot longer. She is simply wearing out. I'm grateful she has pre-planed everything, so when she goes, it should be easy on us kids. I really appreciate that!

I guess, because of my faith, I don't stress out about these things. I'm trying to just embrace the time I have with mother, still sad because we have not had a great relationship and she's got too much dementia to really have any kind of in depth conversation.

I'm sorry for what you are going through. A lot of us are in the same boat....mixed feelings, wanting our LO to have a quality of life, but knowing they are tired and really probably want to "move on".

I read on this forum once that “there is no pain greater than to grieve the loss of a person who is still alive.” Those words spoke to my heart. Prayers for you and your Mom.

We know when they do not have long and we try as best we can to prepare for it, even justifying it with 'we do not want them to suffer', but one is never prepared. The loss, memories and a close parent is very hard to lose. One has to allow oneself to go through the grieving period for as long as it takes, or it will show up in another form in us, usually negatively. It is what it is, just life's progressions and we deal with it as best we know how. Let the grief run it's course, it get a bit easier with time. I send you best wishes.

I dealt with it before and am still dealing with it after :'(

I am sorry for you and for your mother. I was also very close with my mother. I wish I could tell you that you can prepare for the inevitable grief when she goes. I think it is a myth to say that it is actually possible to be prepared. I work in older adult ministries and (in particular) with home-centered folks and their families. I have seen time and again that there is nothing that can prepare us for the loss of someone we love and are close to. I have experienced that grief in my own life. I hope that you have faith that God will be with you. Just know that grief will have it's way with you, and that the best thing you can do for yourself is to have close friends and family on which you can lean. It is best to not try to suppress the times when you are overwhelmed with your grief and to simply allow yourself to move through it. People will tell you that it will get easier with time, but the truth is that it never gets easier. The good news is that you will learn to take the memories and make them part of your life story and of who you are. That's how you remain close with your mother, even when you can no longer see her or talk with her. Another thing that I strongly recommend is that (when the time comes) you find a grief support group to attend. We tend to think that we can handle anything on our own. The loss of a close loved one is unimaginably difficult. Don't go it alone. One other thought...I advise the families I deal with to try not to make major life changes while they are in the stages of grief. It may be painful for you to be in the home you have shared with your mother. But it may also help you move through the early stages of grief, and also provide you with comfort. I will have you in my prayers.

A couple of thoughts: Life is more fragile than we realize so we may think we have more time than we do. Live for today. You may not recognize the signs. After my mother died, I found a pamphlet from Hospice that pointed out things I could have done for her if I recognized the signs. You can find that information online and in these care sites. If you are the primary caregiver, there will be a void as you wonder what to do with yourself. It will be a "new normal" for you, as you start to rebuild your support network. My mother picked out her grave so we could "visit" and she arranged the details for her service. Then we went about living our lives as normally as possible. I don't regret a day that I gave to her. Christ said, "Therefore, do not worry about tomorrow, for tomorrow will worry about itself."

I am sorry for you and for your mother. I was also very close with my mother. I wish I could tell you that you can prepare for the inevitable grief when she goes. I think it is a myth to say that it is actually possible to be prepared. I work in older adult ministries and (in particular) with home-centered folks and their families. I have seen time and again that there is nothing that can prepare us for the loss of someone we love and are close to. I have experienced that grief in my own life. I hope that you have faith that God will be with you. Just know that grief will have it's way with you, and that the best thing you can do for yourself is to have close friends and family on which you can lean. It is best to not try to suppress the times when you are overwhelmed with your grief and to simply allow yourself to move through it. People will tell you that it will get easier with time, but the truth is that it never gets easier. The good news is that you will learn to take the memories and make them part of your life story and of who you are. That's how you remain close with your mother, even when you can no longer see her or talk with her. Another thing that I strongly recommend is that (when the time comes) you find a grief support group to attend. We tend to think that we can handle anything on our own. The loss of a close loved one is unimaginably difficult. Don't go it alone. One other thought...I advise the families I deal with to try not to make major life changes while they are in the stages of grief. It may be painful for you to be in the home you have shared with your mother. But it may also help you move through the early stages of grief, and also provide you with comfort. I will have you in my prayers.

My husband was in poor health for several years before he finally passed away. We were extremely close, and I felt that I couldn't bear to lose him! I was so anxious and worried. I decided to tackle my fear by rehearsing his death so that it wouldn't come as a "surprise." I would imagine waking up and then failing to awaken my husband and finally realizing that he had passed away. This is a strategy I use in other cases to inoculate myself against loss by rehearsing it and accepting it in advance. For example, when I play tennis I imagine that I will lose and imagine the loss and imagine myself accepting it. That way I free myself to play with "nothing to lose." I used to imagine my husband's death over and over. Each time I would experience a shock of anguish and panic at the loss of my main emotional support. Eventually, I would feel a lessening of this anguish as I believed in the reality of his demise. Eventually he passed away just as I had imagined. And I was able to function. He died in his sleep attended by the hospice aide who watched over him while he slept and helped him drink or go to the bathroom as necessary. At that time we had moved his bed into the living room because he was bedridden and we wanted him to share in daily activities. So when I got up to greet him I found the aide struggling to change his diaper. After I helped her, I began to realize that perhaps he had died. His body was cold and stiff, and he didn't have a pulse. I now moved into the scenario that I had imagined, and did not collapse with anguish. "This is to be expected," I could tell myself. I was able to reassure the aide that we had done everything possible to help him and thank her for her services. I could function and call the hospice team and the funeral home to collect the body. I think I did suffer more in advance by continually brooding about my husband's impending death. But I suffered less after he died because I had emotionally prepared myself. Then I went through a period where I had to continually interrupt my thoughts of grief and loss. I couldn't help missing him--but I could avoid joining an inner conversation about how awful it was to be without him. Eventually after a few months I could tolerate thinking more about the meaning of my loss. The hospice program was awesome because they provided grief counseling. I brought along my two friends who had helped care for him. We reminisced about what it was like to know him. We became a support group for each other. It helped all of us as one friend lost her mother, and another lost two of his friends to cancer. I also started a journal where I wrote my memories of living with Dick and what he was like. I mailed some of these memories to the rest of his friends and memories who enjoyed them.

They also recommend you don't make any hasty decisions the first year after a loved one passes away. My father lived in our house all summer after Mom died and then decided in October that he needed to move.

I think anticipation is sometimes as difficult as actually dealing with the death itself. One thing I suggest in a book I've written for family caregivers is to visualize what changes will take place. For example, is there medical equipment that will be removed? If so, think casually about how you might rearrange the furniture to fill that void. You will have more time to yourself. Ponder some things you might enjoy doing or learning. For example, traveling, reconnecting with friends, hobbies or crafts, reading, volunteering, etc. You're not going to make definite plans yet, just start thinking about it. It will relieve some of your anxiety and help you feel more in control of your future. Primarily, give yourself time to mourn -- it's a process that cannot be rushed. Each person handles it in their own way. Realize what a blessing you are to your mother and find peace in that. You don't need to make any major decisions immediately or on impulse. You'll find that your thoughts and mood will change frequently, especially the first few years. 'Wishing you the very best...

Yes, I am dealing with pre-death anxiety but, sadly, not in the way that you mean. I am worried that my mother (92, dementia) and husband (84, dementia) will NOT die any time soon.

My mom just went from her AL to the ER and they refused to keep her for the requisite three days in the hospital but referred her back to skilled nursing. This means that Medicare will not pay; we have to pay $9,000/mo. Out of pocket.

My husband is MISERABLE in his skin and in his mind. He cannot regulate his body temperature, feels like he is freezing, wears four layers of clothes, sweats through it all--and spends all night trying to "dry" his four layers. The night before last he got up and started a fire in the wood stove that was ROARING and shut the door to the room. It was like a Navajo sweat lodge. Frightening!!!!!!!!! He thought this would dry the clothes on his body. Every night I have to redress him in the middle of the night. Last night he went down the stairs in the pitch dark--and he tells me he feels unsteady on his feet. 

So, put all these facts together and what have you got?  A fresh hell every day and very expensive.  How much longer?

Am I proud of the way I am feeling? No. I love them both but neither of them is really enjoying life. Both of them are scaring me to death.  In truth, I lost them long ago to this disease.  So, losing them to death does not feel as painful as it would have done years ago.

So, yes, pre-death anxiety.