Need to say no

jehjeh

It will be 6 months this Sunday since losing my DH. I had been feeling stronger, sleeping pattern had returned to normal. The past 3 or 4 weeks I feel like I'm going backwards. My sleep is a mess. Up till 3 in the morning and still waking at 8 am. All I want to do is sit around my home, not seeing anyone but my cat. I go out with friends for coffee or a meal. Talk on the phone. Hold it together well, so no one knows I'm struggling. But always counting the hours, minutes until I can get home or crawl into bed.

Is this roller coaster of emotions normal? Thought I was making progress but now I'm not so sure.

howhale

I lost my dear wife about five months ago and for a brief period felt I was improving in handling my grief. However, as you describe, I am finding that the depths change. I am now in another low point where I care not to get out, see others, and am triggered by many more sights, thoughts, etc. I don't know if the process will continue to a roller coaster of experiences but I have a feeling that it will. It is quite difficult for others to understand the low points that occur unexpectedly. Will be interesting to see if others share their experiences and what, if anything, they found to be helpful. I tell others that as hard and bad as we may have thought being the caregiver for our loved on was during their illness, what comes after may be the worst yet. I could do "things" during her illness to be productive or helpful or just to stay busy. Afterwards, nothing, silence, long lonely hours waiting for bedtime.

fmb

It will be one year on the 21st, and I am doing worse than I have in months. Yes, the rollercoaster of emotions is quite normal. Some memes liken it to a badly tangled string. I'm all over the place, but my general trajectory the past couple of weeks has been down. I badly want connection with other people, but don't seem to be able to connect, and end up isolated. Not having family or close friends around makes it worse. Spent an hour crying in my therpist's office yesterday. Not sleeping. Digestive issues. The grief is overwhelming. I do think part of it is the time of year. The lack of sunlight here in the northern hemisphere, especially up north, combined with the dismal skies, rain/snow, cold, etc. is depressing even for those who are not experiencing grief. For us it makes it even worse. The silence is deafening.

I think what is helpful is different for each person. I try to stay busy and force myself to go out to the grocery store, library, my volunteer work, etc., but my heart is not in it. The walking trail was clear of snow one day this week, and I walked five miles. Walking in the woods does much for me than walking on a treadmill (which I tend to blow off doing), though I know I need the exercise. I try to pray, though I know God is telling me to wait, that things will get better in due time. I don't know what the answer is.

jehjeh

I just had to revisit this conversation to assure myself that we're all struggling in similar ways. I know I'm depressed. I'm canceling appointments, coffee with friends…anything that requires me leaving home. I know I should get out and walk, talk to someone, move off couch. I just want to sleep but nights are hard. I want to climb into bed all day but at bedtime it's too hard to sleep. I don't like just lying there thinking. I always wondered why people sleep in their recliner rather than go to bed. Now, I get it.

Therapist was no help. Offered strategies to make me feel better. I just need to vent right now. Haven't even dealt with all the trauma of the 10 years spent watching DH slowly leave me.

Can anyone relate?

howhale

https://alzconnected.org/discussion/comment/264086#Comment_264086

I can relate completely to what you describe. After five months and a brief period when I felt I was improving I have returned to the same grief symptoms at the beginning. I have no desire to do anything, eat out is horrible alone, talking to others becomes difficult without breaking down, etc., etc. I hate going to bed because of poor sleep again but it is an escape. My life right now is wake up, cry, force meals while reading or I cry and just discard the food, keep the TV off almost all the time, and on and on. You are not alone in what you are experiencing. I will be trying a couple of grief events starting next week to see if it helps. The therapist was no help. I don't need activities from a workbook. I started forcing myself to return to my wood shop to do pretty mindless "work". At least it distracts my mind and reading is my salvation. It also takes my mind away from my thoughts. I hope this is just a step in the process and that it will subside and let me move forward. Others have described the process as one of peaks and valleys over time with the valleys of depression slowly becoming more shallow as the peaks of life again start to grow. I hope that is true. Good luck to you in your road to life again in some form that you will find at least satisfying.

jehjeh

https://alzconnected.org/discussion/comment/264117#Comment_264117

Thanks so much for sharing your experiences. I wish you well.

fmb

@jehjeh @howhale

Thank you for sharing your stories. I can relate. Yesterday was one year since he died. The run-up to the anniversary was worse than the actual day. I've been forcing myself to do things, but spend way too much time sitting in my recliner surfing the internet. Seeing a therapist is helping with other issues (abuse from childhood and first marriage), but not so much with grief. Now that it's been a year, some people are shaming me for still grieving. No one understands unless they have lost a spouse.

From the vantage point of one year in, I can say that the roller coaster of grief has evened out somewhat, though I do 'relapse' at times. About 10 days ago, after doing little but crying for days, I was suddenly unable to cry. I was calm and detached. I had lapsed back into the initial numbness that I lived in for the first 6+ months. Unfortunately, learning of another death (my husband's hospice nurse recently lost her husband to cancer in a short period of time), shook me out of the numbness and started the tears again. I am so sick and tired of grief! I am so sick and tired of winter, too! This extreme cold (western PA) has kept me out of the woods for far too long. The predicted blizzard this weekend has me already climbing the walls with cabin fever. I just try to muddle through one day at a time.

CampCarol

I am with all of you in feeling this way! I just hit the 7-month mark since my DH died. I thought I was doing a little better, but for some reason, this month hit hard. I'm sure I'm depressed, and it's too dark and cold to do anything outside. Not that I want to; if I didn't have to care for my mom, I wouldn't leave the house. I feel the best I can just being home alone. I can't get to sleep at night; I just lay there and think. So I’m up way too late, the alarm jolts me and another day of slogging comes along. I did read that one has to talk/communicate a LOT about their loss to have any kind of progress with their grieving, so I’m still with my therapist for that reason. She’s a very good listener, and although I always end up ugly-crying, I do think letting all of that out is helping a tiny bit. Thank you all for sharing, it’s more than helpful to know I’m not alone in my thoughts on this horrible journey!

BethL

Just a thought - Antidepressant medication could help. Also, when you reach out to do something to help someone else, it makes you feel good.

This could be oversimplification, but I think these ideas have validity.

jehjeh

https://alzconnected.org/discussion/comment/264227#Comment_264227

Thanks BethL

You're so right about both these things. I try to plan things outside my home, including volunteer work. I'm learning I really need to force myself to get out. Sometimes I tell myself that if I go out, I can have a nap when I get home. A little reward. :)

Eloise0304

It is just four months for me. All of these symptoms and feelings are part of grief. You don't get "over" it. It becomes part of who you are. You are not going to be the same. It is a process and we all experience it differently. Isolation is common, allow for your feelings, be kind to yourself, don't let anyone tell you how you should feel. I am still exhausted everyday, and feeling alone is okay.

Sometimes just being alone is okay, too

Eloise0304

By the way, today, for some reason was particularly exhausting for me. I didn't do anything, just laundry ( I keep doing housework…)

Jo124c

Thanks so much to all who have been writing on this stage 8 experience. It's been two and a half months since DH fell, and just over 2 months since he died from the brain injury from the fall. The sense of his presence at times around the house is strange. Sometimes I am comforted, but mostly when I am reminded of him I remember that he's gone and experience a wave of grief and longing. I do keep busy and have friends, volunteer work and my son who has been wonderful. He and his wife live about 20 minutes away and he was so helpful before DH went to MC, and indeed has been constantly in touch. We text often…he works long hours and so we play a daily Wordle etc., and he's decided he wants to see me Tuesdays after work…he took DH to play golf on Tuesdays for about 2 years…learned the game so I could have one evening to do whatever I wanted. Living alone after 50 years of marriage sucks though…I related to folks talking about having trouble remembering their LO prior to the heavy losses from ALZ. I've been scrolling back through the years on my phone camera and that has helped me remember who he was when there was intelligent executive function behind his eyes. He had memory loss symptoms for a long time, about 15 years…his ALZ progressed so slowly. Enough about me. Just know that we are not alone in our shared grief, your stories help me cope.

LindaLouise

I've been in Stage 8 since August 18, and relate to so much of what you all say. I married my DH at 21, still in college, and have never lived alone in my life. I turned 70 in December, and heading into that decade without my wonderful, supportive partner still seems shocking to me. He had early onset Alzheimer's for about a decade, and I'm slowly finding myself able to look at pictures, listen to music we enjoyed together - but the grief is always present. That's okay - 48 years with my person meant he was present for all of my adult life, his presence is in every corner of our home and I wouldn't want it any other way. I will never "be over" missing him as we built the life I still have together. I help care for my 95 year old mom with dementia, along with my two brothers. That, and picking up my 9 year old grandson from school give a structure to my life as I need to show up for both of them. I like the idea of a reward nap! On my days "off" (school holidays or my brother's "mom" day) I can barely get up and out of bed, so the fatigue is real. I think it is caused by the grief, the residual trauma of watching ALZ destroy my person, and being the sole person in charge of everything related to home repair, bills, etc. Once in a while, I have a moment where I feel normal - it doesn't last long but gives me hope that I'll have a few more of those moments in the future. Thanks to all of you for sharing - it is comforting to know I'm not the only one on this journey…

Eloise0304

Am I allowed to post about how much I miss him? No one sees me sitting in the living room crying. This new reality hit me like a ton of bricks, that he won't be walking through the door, ever. The pain is just too much to bear.

.

howhale

https://alzconnected.org/discussion/comment/264438#Comment_264438

Eloise, you are most definitely allowed to post how much you miss your loved one. That is what many of us do here and find support from others. The pain is real and terrible but so many of us share in what you feel. I am not sure about others but I don't think my family, as much as they love me and miss her, understand the depths of our grief and how it subsides a bit and then returns with a strength we thought we had passed. Share all you want or feel here, vent here, it is a safe place to do so and do it as often as you need.

jehjeh

https://alzconnected.org/discussion/comment/264438#Comment_264438

Yes, this is a very good place to post those thoughts. I miss my DH too.