Processing The Grief

howhale · September 12

My dear wife left us three weeks ago after her eight year battle with this evil disease. I have been her primary caregiver throughout, supported most recently by a couple of caregivers for several hours each day. The family and friends were there for us at the end and for the week or so after the funeral. They all must go back to trying to recover some normalcy in their lives and go forward. I, on the other hand, am at home alone with the hours, filled previously with caring for my wife, now empty. My wife is everywhere in the home, photos, clothes, decorations, etc., etc. I tried a therapist a couple times to find a way to handle the overwhelming grief and frequent breakdowns of crying. I did not find the hour each time spent to be very helpful. I find that, unless you have lived this nightmare as a caregiver and spouse, you do not grasp what we feel. Talking it out helps but most cannot handle the volume of grief we have to shed after years of caregiving. I have become convinced that it may only be someone who has lived this path in my shoes who will be able to help. I have not found any resources locally that can fill this need. Has anyone had luck finding resources to help them process the years of grief. For most who suffer a loss not related to this disease, the time during which their loved one passes is quite short and the grief has not had years to accumulate. In our case, we have been losing our loved one for years piece by piece, each step adding to our mountain of grief. Thanks for any suggestions or resources you may have found.

CampCarol · September 13

Hello @howhale , I’m so sorry you find yourself here in Stage 8. I too have been struggling to acclimate myself to this new reality; I’m almost at 3 months. I speak with a therapist weekly but not sure how long that will continue. The house is way too silent, and no amount of Tv, radio, or other artificial noise is helping. Weirdly though, I find I am more content staying inside looking out than trying to go find ways to occupy my time better. I have been puttering a lot, maybe it’s grief-nesting, I don’t know.

I did call the Alzheimer’s Association and asked them for referrals to grief groups specifically for spouses who lost someone to dementia. They were able to send a few referrals (I am surprised there weren’t more.) I’ve also been googling it and discovered some others that way. I have attended two so far…the first wasn’t very good, but the second was much better. Before my DH passed, I had joined a spouse caregiver group at the library that was run by the Alzheimer’s association, and that was great for support. Everybody had different experiences to share and different levels of knowledge, we were all in it together. So my plan is to keep trying these grief groups until I find my people.

This specific discussion area is not widely utilized, so sometimes it can take a few days to get a response to comments. I always seem to forget to check it when I’m online here, I keep getting drawn back to the regular spousal care threads. I will try to check back more frequently to see what you’re up to. Hang in there, there are people here that will also read this and help!

fmb · September 19

You asked about resources to help with this special kind of grief. During my husband's illness, I found a hospice caregiver support group that was very beneficial. I was actually asked to stay on after he died 8 months ago and have found great support from other members and the facilitator. I feel that there is a better understanding of the toll dementia takes on the caregiver and the unique grief we endure.

This group is open to all, and one does not have to use this hospice's services. It includes people who are caregivers (or Stage 8) for other diseases, too.

Some people say they have benefited from bereavement support groups. I tried one at my church, but it was too soon. In fact, my mother died during the course of this group. I am trying it again this fall in the hope that I get more benefit from it. (((hugs)))

howhale · September 20

I will keep looking for a group that has people involved who can relate to the grief those of us as caregivers for Alzheimer/Dementia. There are definitely many similarities amongst all who are grieving the loss of a loved one but after reading and knowing others, I still believe what we face is somewhat unique to us. Right now, at this early stage, I feel I need that similarity of experience to help me. I don't want a "canned" or textbook grief process. Saw a peek at that with a therapist and it is not what I need now. The grief is overwhelming. I expected it to be bad from all my reading here before my wife passed. I am still in shock as to the depth, the way it just consumes my every being, how unexpected things trigger it, and the actual physical pain it causes. I have grieved other dear loved ones but I have never experienced anything like this and it leaves me almost incapacitated at times. The silence is horrible. Those times of day when I am supposed to be doing something for my dear wife, like preparing her meal, comes and knocks me down as I am alone and without a task to care for her. Who would ever have thought one would pray for more days to care for someone with this nightmare disease. I know it is selfish on my part but I want to care for her again. I read your posts and see how long it has been for so many to even begin to move forward and it scares me that I may not be strong enough to weather this storm until the clouds clear. You all are what keeps me trying for now.

fmb · September 21

https://alzconnected.org/discussion/comment/253999#Comment_253999

I did have to step back from this forum for months in order to preserve my sanity. I still can't read the posts from those actively in the trenches. I have finally come out of the initial shock and numbness stage (not that I can't find my self in that again at any time, as we know grief is not linear). My initial severe anxiety has waned. He died in January. His daughters gave me legal problems over "their" inheritance even before his body was buried. My mother died (out of state) in March; her funeral was in late April. Then in May I moved 20 miles across town to an apartment after having a house for almost 40 years. I didn't have time to grieve.

I will tell you that at 8 months (as of today), I am functioning better. The horrible brain fog is (mostly) gone, though I'm nowhere near as sharp as I was before all the stress of caregiving and grief. Physically I feel like I aged 10 years in the past 2+ years since his stroke (my hair turned silver in that time period, too.) I am exhausted all the time even though I eat right and exercise. My grief comes in waves; I never know what will trigger it. It has a mind of its own. The most surprising thing for me was how grief has brought to the surface long-buried trauma from my past. Things that I've buried for nearly 65 years. I just started seeing a therapist to deal with this.

I have found some FB pages to be useful in my journey in grief:

Jameson Arasi (he lost his brother to suicide, but most of his posts are apropos to grief in general)

Adrian Grief Support (short posts on FB and longer essays on Substack)

Surviving Grief

I did have to watch that I didn't totally immerse myself in grief FB pages, etc. Some of them are very dark and depressing.

I'll try to make an effort to keep checking back in here, or I can be privately messaged through this site, too.

(((Hugs)))

SDianeL · September 25

I understand the physical pain. I was expecting the mental pain but the physical is in your gut. You cannot describe it to anyone. It's nothing like when my Mom passed. Although I loved her dearly and still miss her every day, losing your spouse is different. Losing your spouse slowly to this disease is heartbreaking. It's been a year and what has gotten me through this is to do something each day to honor his memory. Know that your dear wife wouldn't want you to grieve. Think about what would you say to her if the situation were reversed? Then say that to yourself. After my Mom passed Hospice was there for our family. They called daily to check on us and offered grief counseling and clergy. I would highly recommend contacting Hospice in your area.

troubledone · September 28

For all of you going through this, it does seem that everyone above has family who are there to help support you. My concern is: I've got no one. When my mom goes, that's it—no more family. That's scary.

I am glad to hear that at least you have some support from other family members.

fmb · October 1

https://alzconnected.org/discussion/comment/254750#Comment_254750

I also have no family to help me. I am not in my sons' lives by their choice (very ugly divorce from their father). My parents are deceased. We siblings are very emotionally distant (and geographically distant) from each other. I have one friend, and he lives 100 miles away and would not be able to drop everything to come help me if I needed it. You are right, it is very scary.

troubledone · October 2

https://alzconnected.org/discussion/comment/255044#Comment_255044

We are having a zoom meeting now if you want to join. Text me if you want the link: 808 482 4136

fmb · October 2

https://alzconnected.org/discussion/comment/255141#Comment_255141

Thank you for the invite, but my current laptop won't do Zoom (no camera). I'm getting a new laptop tomorrow, so I might consider it in the future.

Processing The Grief

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