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

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.

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 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.

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 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

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 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,,

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.

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.

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.

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.

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 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.

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?