Fears in Stage 8

jehjeh · April 7

I'm dealing with something i haven't seen addressed here and just wonder if anyone else has experienced the kind of fears I'm feeling?

I have irrational fears for my health, for my safety and for my financial stability.

I'm imagining the worst when I feel a new pain or lump…

I triple check to be sure appliances are turned off, and doors locked when leaving the house or going to bed.

I check and double check bank accounts daily to make sure I'm not over spending.

I have no reasonable explanation since I took care of all these things for myself, my husband, even my parents and sister when they grew older. Why, now, when it's only me, am I suddenly fearful? There was no one to care for me before so it's not like I've lost a safety net. I just wish I could get these fears out of my head.

sherryandwilliam · April 7

I lost my husband alzheimer 3 weeks ago. I think our brains are so scrambled from the experience of being constantly consumed with taking care of someone we have a huge void now and the mind wanders. I am obsessing about what caused his rapid decline and I have so much free time that I recently didnt I am replacing it with something else. Hopefully you get past that stage. Maybe fear of being completely alone?

Eloise0304 · April 7

It is brain fog, I think..I am now fearful of Everything since my LO passed six months ago. I retrace my steps, check my accounts, make sure I locked my car, sometimes multiple times. Everything takes on a new dynamic, as my world is upside down. You are not alone, that is for sure

jgreen · April 8

Hi, @jehjeh So sorry you are dealing with this alone. You are in my prayers.

I am not where you are as my DH probably in late stage 5. I can relate to your mind buzzing with all kinds of ‘what ifs’ and ‘how can I….’ These thoughts with me constantly but especially at night when trying to sleep/rest. A dear friend advised me to seek therapy and meds for anxiety and I made the plunge about a month ago. I am taking a low dose anti anxiety med prescribed by a psychiatric nurse practitioner and she also recommended counseling. I saw counselor for first time in my life yesterday and found her quite knowledgeable about dementia and caregiver stress. She had several tips and also agreed with the low dose meds. One tip is called Progessive muscle relaxation - look it up online. It is a type of meditation that you can use if you feel you are getting in over your head with worry/fear.

Grief is a form of stress/anxiety and you might want to consider a mental health consult. I consulted my insurance (Medicare) and found local organization that accepted Medicare. Took a chance on the psych nurse practitioner they said was accepting patients and was very fortunate to have one that I hit it off with. If you decide to go this route I hope you have the same luck. Just don’t try to do this alone! There are caring professionals out there who will be there for you.

Please stay in touch and let us know how you are doing. We care!

howhale · April 11

When we find ourselves alone, and I mean truly alone, in the silence of our home for long unfilled hours, our mind is still working. I feel afraid, not of being harmed, or theft, or those common fears. I just feel afraid after almost 60 years with my DW. It has been about 8 months now and when i do not put my mind to "work" it seeks out its' own places to wander and often triggers a response from tears, to anxiety, to being over cautious, etc., etc. We lost our loved one mentally a long time ago but just having their physical presence, regardless of how hard our task was as caregiver, kept us more than busy. The hard stop when we lost them is hard for our mind to adjust to without guidance. I use this site as one activity. I read, constantly. In fact if I am not reading when taking a meal, I cannot eat and end up tossing the meal because my mind finds a place to cause my sadness. Look for anything that you can do to try to put your mind to work focusing on something. A hobby, a walk, maybe TV, anything.

TrumpetSwan · April 11

Thank you for sharing your feelings in this post because, to be honest, I am afraid of everything right now.

The onset of my general fear occurred after my loved one died. I have been trying to get to the source of it all so I can resolve it and maybe get back to feeling the way I used to. I miss not feeling afraid.

I used to feel able, and now I hesitate at most things. I wondered if it was that someone passing so close reminds us of our own vulnerability.

I am hoping that my general fear of just about everything eventually passes. Probably anything that grounds us and makes us feel strong and capable is good. I think that includes things like walking outside, reading, gardening, listening to music and signing along with it or dancing if you feel like it. I try these things and it brings some relief for a short while but nothing lasting so far.

You are not alone.

GothicGremlin · April 11

I've hesitated and hesitated about posting about this, but I'm going to go ahead and post.

As some of you might remember, my younger sister Peggy passed away two years ago from Alzheimer's and FTD. It was a nightmare.

Right after she passed, I felt much the same as all of you, with the exception of being alone (which is a huge difference and why I've hesitated in posting). But everything else is much the same - now what do I do - go back to my old career-do something new-retire?, have I taken care of all of her finances correctly?, her estate?, and more. And then of course there's the whole issue of trying to make sense of someone so young getting diagnosed with AD & FTD, and just dealing with the fact that she's gone.

This community has always helped me so much, so one of my first thoughts was how do I give back?

What I ended up doing was to gather up all of my doctor notes, therapy notes, social media posts (here and elsewhere) and I put them all together into a kind of chronology. Just that alone gave me some clarity. Like, I always thought that Peggy would occasionally plateau, but in looking at all of my notes, I saw that no, she never really did. It was all wishful thinking on my part.

Finally, I put together a blog (I am so not a blogger, and yet…). I've been posting since this last January, and I think it will end around mid-August, if I stick to the schedule I created. My two biggest goals - try to provide a kind of roadmap for others who are caregiving and hope it helps, and to help myself make sense of everything that happened. I don't know if I'm succeeding on the first goal, but I am on the second. I'm still sad at losing my sister, but the blog has given me clarity and it has given me a sense of peace. I really did do everything I could to make her life better with the time and resources that I had.

If any of you are curious about the blog, it's here: https://fiveandahalfyears.net/ There's a table of contents and you can navigate it using that.

So, maybe journaling or writing might help with making peace with everything, and that might help with the fear. I second @TrumpetSwan on the dancing and music. I'd be in much worse shape without music.

Quilting brings calm · April 12

It is brain fog, the ability to actually succumb to stress and exhaustion now that no one depends on you, depression, and a deep fear that you will get dementia yourself. For myself, I add the fact that people die even though they are younger than me. Who’s going to be there for me? That’s scary in itself.

It should get better over time. I’d give it at least two years. Start granting yourself the grace to Do Nothing for the day if you choose. To sleep in- and to stay up late if you want. To do something fun on the spur of the moment, to read or binge watch TV, or to try a new ( or abandoned) hobby. To revisit friends or make new ones.

sixcats · April 12

I so appreciate reading all these messages. It makes me feel relieved that I haven’t completely lost my mind. It’s been 4 months for me. My husband’s ashes are in a sweet alcove in my house with a picture of the two of us. And lavender. For first time in 25 years I’m having financial issues. Pension plans, Social Security, FTB, IRS have been pathetic, incompetent, and in no hurry at all to address my numerous concerns and communications.
The utter complete hopeless loneliness is the biggest hurdle for me. It doesn’t matter what activities I pick up. There are nights when I’m alone that are dreadful I don’t even have the attention span to watch half a movie on Netflix. Oh yeah, I pray a lot.

LindaLouise · April 13

Thanks to all of you weighing in on this topic. My DH passed in August and I feel like recently I've been going backwards - there was so much to do, figure out, process that I thought I was doing pretty good - sad and lonely, but okay. Now, the reality seems to be setting in. I just turned 70, then went through my DHs first heavenly birthday, then what would have been our 48th Anniversary, and it all just seems so crushingly sad. I have several grandkids and kids that I see frequently and that helps, but not having my person just seems like something I'll never get over. And that's okay. I think getting outside and walking, praying, and allowing myself to feel that scary sadness will help to eventually get to a new normal. I do feel grateful that I had a wonderful partner for almost 50 years, and that I have supportive kids - but that feeling when I get in the car to go home, alone, and then come into my empty house (thank goodness for my little dog!) and sit on the couch where we used to sit together - that feeling of utter aloneness I hope will get less intense with time. It helps to know I'm not the only one experiencing these feelings and worries - I also believe that our journey as caregivers for our LOs with Alzheimer's has left us uniquely traumatized and we are recovering from so much grief and loss over so many years - in addition to the final loss we more recently experienced. Thanks for being there…

howhale · April 13

https://alzconnected.org/discussion/comment/270237#Comment_270237

I too believe that our journeys are unique which makes it difficult for others to grasp. After my DW left last August and many saw my brief rally after a few months they thought it was ending. Little did they know, like you, those first few months are filled with so many things to do that we still are not grieving fully because we are so busy, recuperating from the exhaustion of the path taken and our minds are engaged in all that needs to be done. Once that was completed, or at least pretty much completed, I "relapsed" back into the depths of my grief. It was then that I shared that while they visited regularly, they were able to leave and go home and grieve the loss. I could not. I was "on duty" as her care giver and I could not allow her to see me break down. It did happen once or twice and I saw the utter fear in her face as she was unable to understand why this person in her home was crying and sobbing. So, for the almost ten years prior to her passing, I did not grieve. I had ten years of grieving to do and that when the final gate on our travels closed, my grieving could start. While not accurate, I simplified my situation as "it took me ten years to accumulate this grief I have, it may take me ten years to shed it" so be patient. In time that seemed to help them accept that it could be a while and many, many small steps. Their understanding has helped but nothing, absolutely nothing, helps relieve that suffocating loneliness you mentioned.

jehjeh · April 18

I am so grateful to all who have added to this conversation. I have been giving myself permission to stay up late, sleep in... it still feels strange but I have to remind myself that there's no reason I can't. Going to bed is the worst. Nothing to do but lie there and think. TV helps lull me to sleep.

I had my first ever car accident the other day. Nothing serious but a lot of damage to my car. I realized when I came home that there was no one to share the story with. The grief hit me like a brick.

Thanks for being there. It's good to know I'm not alone.

Fears in Stage 8

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