Feeling so alone(1)

LizG55

Hi everyone,

It's so awful to feel so alone. One minute you have a companion, company, help, etc. and the next you are alone except for having another child, another responsibility. He did a lot here so on top of taking on caregiving there's that too. It's not really human the way I live anymore. Slave, maid,  run down machine kind of thing and so lonely for living, the things we made decisions together and just being alive with a "family" versus alone feeling nowhere but enslaved in work and stress.  Sometimes I wish I would just die already myself and have some peace, there is no peace and very little rest. Only stress, work, loneliness and lack of joy or any pleasure. Total exhaustion day after day after day. People tell me to take time for myself, really? .

Well, just wanted to vent that as I get ready to get back  my jobs.... 

Mint

(((Liz))),   I’m so sorry for how lonely and sad you feel.  You can call 800 272 3900, the Alzheimer’s Association, ask to speak to a care consultant.  Maybe they could help a bit.

Buggsroo

Omg I could have written this. I know about being a maid, dogsbody, slave, you name it. It is lonely, it is so tough. I urge you to go out, walk for half an hour if you can, the sunlight and fresh air have a way of renewing your resolve. It sounds like you have burnout and you could use some assistance. My poor mother gets phone calls every other day from me. 

It is like caring for a spoiled child, one who pitches a fit if he or she doesn’t get what they want. I find myself looking heavenward, doing my silent scream, mumbling under my breath, anything just to get past my compassion fatigue. 

I am going to look into some counselling for myself. You might try that as well. Good luck and know that all of us on this forum are in the same boat.

Nacho

Hi, my feeling are the same.  Except wanting to die.  It’s hard to explain but my partner is no longer the person I married.  I used to depend on him to fix things but now he can’t fix this.  I thought I was prepared as his mother n sister both passed from this terrible disease.  We have had 3.5 good years since the diagnosis but the last 3-4 month he has progressed tremendously.  I would like to say to reach out to whatever avenues you have and seek professional help.  But seek god first for some inner peace.  I’m still flailing around trying to find what I need personally to meet my needs.  Trying new things.  I’m blessed we have 2 great adult children I can get some help from.

Crushed

DW is well cared for in a facility so all I have is the loneliness. 

She had a wonderful custom whenever her work or children or anything interrupted our life.  for example  I always had the children after 10 pm ( I taught afternoon classes).  I would come back to bed to find her asleep and there was a card on my pillow saying "I'll make it up to you"  It was her mantra and I loved it.   I would simply tell her every day that she was the best thing that ever happened to me in my life.  This is not something easily found.   

arizonadianne

I echo everything here, especially getting outside for a walk. I also like to listen to my favorite music, and keep grocery-store flowers on the kitchen counter. I keep a journal. I started wondering if I was getting depressed and I looked it up: Typical signs of depression in adults include persistent feelings of sadness or emptiness, feeling irritated, overwhelming feelings of guilt, anxiety, frustration, or anger, changes in appetite, an inability to concentrate, and loss of interest in previously enjoyed activities, among other symptoms.

A doctor can help treat depression and it’s no shame when it happens. Let’s hang in there together, LizG55. 

LizG55

Sayra wrote:

(((Liz))),   I’m so sorry for how lonely and sad you feel.  You can call 800 272 3900, the Alzheimer’s Association, ask to speak to a care consultant.  Maybe they could help a bit.

Sayra... thank you. I was so busy this is my first time free at almost 2AM!  I have called them though before and they are super great.  I always wake up so depressed hurting all over knowing I have to start another day of slave labor as I call it, and really get down. I wake up lonely. But once I  push myself to do the jobs at hand I feel better to have gotten them done.  Maybe the key is to not think! Because once I'm busy can't think about how I feel except exhausted.

The alz assoc is very kind and they do know just what to say. If I had the time I would have called.. thank you dear friend  

LizG55

Buggsroo wrote:

Omg I could have written this. I know about being a maid, dogsbody, slave, you name it. It is lonely, it is so tough. I urge you to go out, walk for half an hour if you can, the sunlight and fresh air have a way of renewing your resolve. It sounds like you have burnout and you could use some assistance. My poor mother gets phone calls every other day from me. 

It is like caring for a spoiled child, one who pitches a fit if he or she doesn’t get what they want. I find myself looking heavenward, doing my silent scream, mumbling under my breath, anything just to get past my compassion fatigue. 

Buggs.... thank you for your reply.  It really is very tough, I'm sorry you are going through this too.. Yes exactly... like a spoiled child!! Of course he was never like this. He just sees my role as his nurse.. .. and that it is my job to care for him.. he takes it for granted, which I don't appreciate but what can you do.  But at the same time he is helpless to help himself so I am his nurse because I have to be, and he would do the same for me actually and has!! So there you go. 

I did try that online counselling  but wasn't all that thrilled with it.. maybe you will get a better social worker. I remember back in the day when a therapist had more than her masters to be able to call herself a counsellor.  I have been looking online through other sources but most don't take Medicare so that's out.. but still looking also. 

Yes we can all empathize for sure with each other... hang in there yourself  

LizG55

Nacho wrote:

Hi, my feeling are the same.  Except wanting to die.  It’s hard to explain but my partner is no longer the person I married.  I used to depend on him to fix things but now he can’t fix this.  I thought I was prepared as his mother n sister both passed from this terrible disease.  We have had 3.5 good years since the diagnosis but the last 3-4 month he has progressed tremendously.  I would like to say to reach out to whatever avenues you have and seek professional help.  But seek god first for some inner peace.  I’m still flailing around trying to find what I need personally to meet my needs.  Trying new things.  I’m blessed we have 2 great adult children I can get some help from.

Hi Nacho... I really shouldn't have written that.... I don't want to die, I just want some rest and peace. But I'm in a bad mood when I get up and start my day because I'm soooo exhausted. 

I'm sorry you are dealing with this situation. Right we've lost the person who they were. Same here also I went through this with my dad but everyone has it differently and I don't think we can ever be fully prepared for how it will affect us and our lives.  So he really has gone downhill in the last few months, have you contacted Hospice? I'm glad you have children that are a source of happiness and help from.  I had a half hour before I had to get to my next "job", went outside and took that half hour nap and it really helped.. even that small one. It was cold but listening to the trees blowing in the wind was somehow soothing as I do love nature.. thank you for your response and you hang in there as well... 

LizG55

Crushed wrote:

DW is well cared for in a facility so all I have is the loneliness. 

She had a wonderful custom whenever her work or children or anything interrupted our life.  for example  I always had the children after 10 pm ( I taught afternoon classes).  I would come back to bed to find her asleep and there was a card on my pillow saying "I'll make it up to you"  It was her mantra and I loved it.   I would simply tell her every day that she was the best thing that ever happened to me in my life.  This is not something easily found.  

**********

 

Crushed.... I'm truly sorry.  I'm glad at least you were able to put her in a facility I hope one you are comfortable with.  There are no words I can find at 2 AM to really express what it's like to miss the love of your life and what that brings to you. One word is loneliness, but the grief as well. Feeling not whole anymore. Some people never find love but once you really have, that loss is overwhelming.  What did you teach?  I always say to people I feel like I'm on a small piece of island in the middle of the ocean, alone with nothing around.... lost. Well, maybe being so busy until I drop is better than the way I feel when I wake up thinking about it all...  Lovely mantra by the way. 

LizG55

arizonadianne wrote:

I echo everything here, especially getting outside for a walk. I also like to listen to my favorite music, and keep grocery-store flowers on the kitchen counter. I keep a journal. I started wondering if I was getting depressed and I looked it up: Typical signs of depression in adults include persistent feelings of sadness or emptiness, feeling irritated, overwhelming feelings of guilt, anxiety, frustration, or anger, changes in appetite, an inability to concentrate, and loss of interest in previously enjoyed activities, among other symptoms.

A doctor can help treat depression and it’s no shame when it happens. Let’s hang in there together, LizG55. 

**********

Dianne thank you. I am alright without the meds, I just need some time to myself to rest. No one could go on with the pace I'm at. I like listening to music at night and podcasts too.  The loneliness is awful for sure it eats away at me, but right now I'm so tired all I can think of is sleep... have to fuel up for another day of ? 

Jack Z.

I think that the decreased amount of sunlight which affects our partners can also be hard on us during the winter months.  You can buy a fairly inexpensive light therapy lamp online.  Make sure its rated up to 10,000 lumens.  Just a suggestion...

Crushed

LizG55 wrote:

Crushed wrote:

  What did you teach?  I always say to people I feel like I'm on a small piece of island in the middle of the ocean, alone with nothing around.... lost. Well, maybe being so busy until I drop is better than the way I feel when I wake up thinking about it all...  Lovely mantra by the way. 

My field is science-based  safety regulation.  If it kills, cripples, crashes, maims,  burns,  sinks or causes cancer I've worked on it. I've trained Physicians, engineers, economists and lawyers in how to use safety regulation keep people from dying.   Ive stood in a room with 8,000  tons of Chicken manure checking fire safety.  Ive worked on autopsy protocols and done presentations for funeral directors who set up the temporary morgues at disasters.  Ive done patient safety in psychiatric hospitals.   I helped standardize safety test methods.
Through it all I constantly focus on the science and engineering to make sure we do the best possible job of public safety .  I mention this in detail because I have been working on Covid Safety issues  since March 2020.   Covid has killed so many people UNNECESSARILY that it dwarfs all the life safety issues of my career.  

Yes "unnecessarily"  Deaths per million 

USA  2616
Italy   2339

France  1939

U K       2221

Germany  1381

Since March 2021 in the USA deaths are concentrated in states and communities that reject science and regulation     Since March Florida has  death toll over twice the USA per capita  
 

  

  

  

Davegrant

I would like to comment on taking time for yourself. I pay a relative to come in for four hours a week to sit with my DW. I had a grand daughter last summer and when she went to work , I hired a daughter in law.  This seems to make a big difference to my mental health. During that time I have some freedom to do what I want. Sometimes it is only to go to the library or the Gymn or I park in McDonald's lot and have a hamburger and a coke or run some errands by myself. The point is that it seems to make a big difference. My DW resists me leaving the house but I continue to do it for me.

LizG55

Davegrant I hear you.  Thanks for replying..

Tfreedz

Hi Liz! This is so, so hard, isn’t it?!? When you are feeling alone, think of all of us out here doing exactly what you are doing. Maybe try journaling your feelings or even memories of good times together. Also keep posting, it really helps to “talk” to people who get it.

For me it’s my mom not my spouse, but going through it with her, I’m terrified of this happening to my spouse or worse me. My mom (and brother with Down’s syndrome) live with us and the toll it has taken on me is tremendous. I’m exhausted from cooking,cleaning and entertaining the two of them on top of my own family’s care. I don’t want to get out of bed sometimes because I know what the day ahead will entail. I want my mom back, I want to have her cook me a delicious meal like she used to, I want her to handle her own hygiene and my brothers. But this is my life now...I take little breaks in the bathroom, after I’ve scrubbed it for the third time in a day, lol.

Respite is huge and even just a couple of hours a week can make a huge difference, it has for me. It helps me to get through the hard moments. I hope you can find some relief soon. Sending hugs and warm thoughts your way!

LizG55

Jack... I know about the light therapy... I think though really my problem is that I need more rest, less work. I'm trying to take a nap before I start my evening jobs even though it's a short one it does help, and I like to take it outside if I can.  Thanks

LizG55

Crushed wrote:

LizG55 wrote:

Crushed wrote:

 Crushed...

Good for you!!! What a meaningful career!!!!  A real eye opener of a profession.  I've learned a lot about environmental toxicity over the last 26 years.. hazardous  sites, toxic exposures and so on. Yes, the Covid nightmare is a tragedy on many levels. I live in Florida not because I want to be here, I'm from NY. But the political climate here alone is enough to make me sick.. I don't know that politics is acceptable on this forum but ugh. on FL wish I could leave but stuck in my situation. 

What about the Gulf Oil Spill no one talk about that anymore but it's still there and plenty of people got sick from that, 9/11 first responders especially, that didn't have proper protective gear, and the list goes on. 

Staggering with Covid and as you say didn't need to happen. Sad and disgraceful;...

   

LizG55

Hi Tfreedz,

 I think for me talking to people who get it really helps a lot and just having some social outlet about things we have in common that we're living with. Support for sure  

Oh my gosh what a load you have there to deal with.  You must be exhausted!!!! We feel the same way about getting out of bed for the same reasons but different challenges.  Can your brother with Downs Syndrome do anything like tasks or chores? I used to work with kids with that condition some were functional more than others. 

I'm so sorry about your mom. My mother did not have this illness but my dad did and it took a lot of my heart with him. It was horrific for me to see such a strong, capable, successful man, deteriorate like that. It will always haunt me. My husband now... 

Try not to worry about getting Dementia. It won't help anything. Funny I don't think about that. just hoping all this work doesn't kill me off if you know what I mean. 

But I'm also sorry for your suffering, as you have a very full plate. I hope you don't burn out and can manage what you need to. Thanks for writing in and sending you warm hugs.. 

Crushed

LizG55 wrote:

Crushed wrote:

LizG55 wrote:

Crushed wrote:

 Crushed...

Yes, the Covid nightmare is a tragedy on many levels. I live in Florida not because I want to be here, I'm from NY. But the political climate here alone is enough to make me sick.. I don't know that politics is acceptable on this forum but ugh. on FL wish I could leave but stuck in my situation. 

 I try to limit myself here to technical policy issues that are directly relevant to Alzheimer's patients, caretakers and families 
 
There has been a lot of pseudo medical nonsense about Covid and nursing homes. in gneral  Alzheimer's patients did not die of "loneliness" in nursing homes in 2020.  They died of Covid and under counting their deaths was a disgraceful political decision in several states . 
 

• Medicare FFS beneficiaries with dementia, whether living in the community or nursing homes, had among the highest rates of COVID-19 diagnosis and mortality of all of the Medicare FFS populations evaluated.

• Between February 28 and September 27, 2020, 166,485 beneficiaries with dementia (8.8%) were diagnosed with COVID-19, compared to 2.4% of all Medicare FFS beneficiaries.

• Almost one-third of beneficiaries with dementia who were infected with COVID-19 died, regardless of whether they lived in the community or in a nursing home, almost twice the 17.5% mortality rate among all Medicare FFS beneficiaries.

• After controlling for living arrangements, age, chronic conditions, and other characteristics, the likelihood of being diagnosed with COVID-19 was 1.5 times greater for persons with dementia and their risk of dying was 1.6 times higher.

  https://aspe.hhs.gov/reports/impact-covid-19-medicare-beneficiaries-dementia-issue-brief

 

   

LizG55

Crushed wrote:

LizG55 wrote:

Crushed wrote:

LizG55 wrote:

Crushed wrote:

Crushed the whole thing is a terrible disgrace, no question.