Grief after loss of mom with Alzheimer’s

mistykjell10

Hi there, new to the support forum and hoping I can find any whom are dealing with the grief of losing a mom to Alzheimer’s. I was her sole caregiver for nearly 7-10 years. I’m hoping there’s some other Alzheimer’s daughters out there. How do you handle the combined grief, trauma from caregiving and near debilitating fear that you’ll meet the same demise? This is a support group I have yet to find. Anyone out there?

fmb

I am so sorry for your loss of your mom. Welcome to the forum, though I am sorry for the reason you are here.

I lost my father to Alz in 2019. My ex-husband (the father of my sons) died July 16, 2024 (not related to dementia). My husband had effects from a stroke in June 2023, congestive heart failure, and Stage 7 Alzheimer's when he died January 21. My mother has Stage 7 Alzheimer's and heart failure, has been in hospice care for a year, and lives in a MCF 1000 miles away. She suffered a fall on Monday and broke her femur. We kids refused surgery and authorized pain medication to keep her comfortable. She may have a couple of months left if she does not develop pneumonia sooner.

The trauma from caregiving nearly killed me while my DH was at home and in and out of the hospital and rehab 6 times in 4-1/2 mos. before I had to place him in a facility and initiate hospice care. Even so, I was at the facility nearly every day to ensure that he was receiving adequate care. The grief of losing him and losing the relationship I had with my mother is overwhelming. He died 5-1/2 weeks ago, and my grief is still very raw. The anxiety is unbearable at times, too, especially since his daughters have given me a hard time about the will and assets left by direct beneficiary. There are days when I literally have to take it one breath at a time.

The way I am coping with all of this is to try to take very good care of my physical health first and foremost. Watching what I eat, eating on a regular schedule whether I'm hungry or not, getting plenty of rest even when sleep eludes me, getting physical exercise (trail walking) when I can. Staying well hydrated is essential. Grief is very dehydrating and exhausting. I have read that grief affects every system in the body. The amped up cortisol and adrenalin cause increased anxiety. They also can raise your blood pressure and blood sugar. Grief weakens your immune system. Take very good care of yourself.

I am a religious person, and have increased my involvement with my church and my prayer life. Anything on a spiritual or metaphysical level that resonates with you can help. Try to surround yourself with people who truly care about you. Don't be afraid to ask for help or to initiate an activity with a friend, even if it is just getting together for an hour. Many people stay away because they don't know what a grieving person wants or needs. I am very involved in volunteer work that I find meaningful; it gives me purpose now that I am no longer DH's advocate and caregiver. Many hospice organizations and churches sponsor bereavement ministries or support groups. I continue to attend the caregiver support group sponsored by DH's hospice (do not have to use their hospice services to attend), and will be starting a bereavement ministry group session at my church on Tuesday. Many people find grief/trauma counseling helpful.

As for anxiety about developing Alzheimer's yourself, I can't quote the source, but I have read that the vast majority of dementia cases are not hereditary. As there is virtually nothing that can be done to prevent the disease at this time, I simply try to follow the best practices that are recommended for all of us for disease prevention: eating a healthful diet, getting exercise regularly, and keeping a healthy lifestyle.

Don't hesitate to post in this group on the forum. There is a small group of us who have stayed on after the loss of our loved ones, and we are good support for each other and those who wish to join us. ((hugs))

BassetHoundAnn

Hello, Mistykjell. I'm so very sorry about your mother. It is hard, isn't it? It feels like ALZ and caregiving compounds all the feelings of grief.

I lost my mom last summer. It has been so incredibly hard. I miss her, and I miss caring for her, even though at the time I hated nearly every minute of it. I hated what the disease did to her.

I go through periods of depression and anxiety that don't seem to get any less intense as time goes on. I met with a grief counselor. He said that it's typical for grief to hit very hard at about 3-4 months after death. One thinks that things will get better once the estate is settled, the bills paid, the accounts closed. But that's far from the case. Quite the opposite. He warned me that things would get worse. They have.

Fmb is correct that for some reason grief is dehydrating. I keep a bottle of water or glass of ice water with me around the clock.

I had a checkup with my doctor about 5 months after my mom died and my blood sugar and blood pressure numbers were through the roof. They'd always been on the low side in past appointments. Grief does a number on one's body.

My mother once said to me after her mother died "There's nothing to prepare you for not having a mother anymore." She is so very right. I miss her every day.

The grief counselor told me to do things in her memory every day, little things she would have done like talking to and smiling at people. This does bring comfort.

For years my life was organized around caregiving, and now there's this emptiness. Some days I feel like I'm swinging on a trapeze above the void.

I'm so very sorry, Mistykjell. It's hard. It's really hard. Hugs to you.

BassetHoundAnn

BassetHoundAnn

Drat. The forum software keeps eating my messages.