I just had a good cry

Berryette

So I am sorry for this post ahead of time.  I just came from the basement where I sat and cried it out.  Now I am just angry- and this is the only place I can get the anger out before I say something to DH.   I didnt realize all this was hidden in my heart til just now.  I want to know when I get "a pass"?  When do I get someone to care about how I am feeling?  My DH worked til he was 76- in his words- that's all he knew.  All he wanted to do.  (It wasnt financially necessary).  So I gave him "a pass" on the homefront.  I did all the outside work, the inside work, the bill paying, the shopping, the animal care, and the keeping up with his side of the family all while I was suffering from undiagnosed Lupus.   After the diagnosis- I still did it all- I just finally knew I wasnt crazy.   Now he gets "a pass" from being responsible for anything because he has dementia.  Oh dear Lord- I know how awful I sound!!!  I am ashamed- but the feelings are there.  I need them to go away.  I am just plain tired of everything being on me.  Not just since his memory issues started- but from the beginning of our marriage.  He worked hard and worked many hours running our business.  I am proud of him for that.  But he never did any of the stuff he didnt want to do.  That fell on me.  Now that retirement has finally come- and I thought we could share the "stuff".  I was wrong again.  Someone please give me an attitude adjustment.

Crushed

I call it being "Angry at the Universe"  and frankly the universe doesn't care !!

I know a lady who slaved for years taking care of her parents with the promise that the house would be hers . At the end of the day it turned out they had deeded the house to her estranged brother years before and she got nothing.  

I was the homemaker for my brilliant wife  I had a full time job but did all shopping cooking laundry etc. When I took emeritus status I got a few more of her tasks
But dementia was already hitting.  I took on the legal job of suing the government and maximizing her pension.  (I won but it was real work)
I was the 24/7/365 caretaker for 7 years.
Ive now been alone for 5 with her in MC
She is only 70  She was diagnosed 12 years ago.  
I hate the universe for that 
 
I can only say I adored DW  since I first talked to her.  That never stopped 
I have memories of romantic encounters that would probably shock my children  
who think of her as a very proper lady doctor 
Sometimes memories  have to do but she loved me
and perhaps that is enough  

I can only say simplify your life and don't do extra stuff you don't like     
I ironed her clothes for work  but i haven't used it in years.
  

ImMaggieMae

Berryette, sometimes a good cry is the only thing left to deal with sadness, anger and stress. I did a lot of that in the early days of my DH’s dementia. It sounds like the arrangement you and your DH had before dementia was acceptable to you. He ran the business side of the marriage and you ran the home front. That may have been with the expectation of shared responsibilities after his retirement, but up until dementia, it was ok. 

Now things have changed drastically and you’re aware of the direction this is all going. I suspect your tears were not just anger, uncertainty and frustration but also a great deal of sadness for both him and yourself. Yeah, he does get a “pass” from responsibilities as does my DH. But I am so devastated by what he is going through, as I’m sure you are too. You don’t sound awful at all. 

Can you hire someone to do some of the outdoor work on a regular basis? How about having a housekeeper come in every so often. We have someone who’s been doing very basic outdoor cleanup for several years since my husband had a bone spur in his neck, so we just kept them. We don’t have a housekeeper but we did hire a caregiver who comes in for 4 hours, 3 days per week. I was resistant at first, but it has worked out very well. It gives me and my sister who lives here, time to do grocery shopping and errands or sometimes just to go upstairs for a few hours of sleep. 

Your life has probably changed drastically with caring for your husband, as mine has.  Our “golden years” are being spent going to doctors and sometimes ER and hospital visits. I hate that we aren’t living the life we planned. I hate that he is going through this. And like you, sometimes I just have to go someplace where he can’t hear and cry. 

MaryG123

You don’t sound awful Berryette, just worn out.  I think anger is a perfectly reasonable response to the unreasonable stress we’re under.  It’s so unfair!!!

Just Bill

Don't sweat it Berryette we have all thought the same thoughts you have and some maybe even darker thoughts we don't want to share. This is a process and you have to get comfortable being uncomfortable. All your future plans are gone, you will have to reinvent yourself. Find your happiness in your reinvention.

Faith,Hope,Love

You don't sound awful Berryette.  You sound like someone who has had the rug pulled out from underneath your whole life.  I think your feelings are normal.  But you've landed in the right place.  I can relate to your feelings as I'm sure everyone else can.  For me, it was a grieving process that I had to go thru.  Everything I thought was going to happen in our retirement was yanked out from underneath me.  It felt like the death of everything.  It took me 6 months or so to get thru all the steps of grief and be able to come to terms with DH's diagnosis and my new future.  It hasn't been easy, but with the help of everyone here it has become possible.  I lean on everyone here to give me the courage, strength and hope I need to get thru this.

Ed1937

I think many of us have cried at one time or another. Nobody here will tell you that you don't have that right. Plans are turned upside down, and there is a lot of pain.

"When do I get someone to care about how I am feeling? " People here care. Visit often.

loveskitties

Perhaps it might help to make a list of all the things you do and then go down the list and determine if there is someone or agency which can take over that chore...even part time, then actively look for that help.  We sometimes feel that just because we have always done it, means we should continue to do it...not so with the extreme change of environment caregivers go thru.

To have the future you had planned on taken from you, after all your hard work, is devastating.  No two ways about it.  Having more put on your plate only makes it worse.  Place your anger on the disease, not your loved one, as he has no more control over it than you do.

I hope that you have success with limiting your responsibilities and find that it helps with your feelings.  There will come a time when you will be without your LO, either thru death or facility placement, and all but his care will still be your responsibility.

Know that venting here is a very good thing...lots of folks who are or have traveled the same road you are on and understand your feelings.

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Paris20

Berryette, I understand how you feel, and why you’re crying. It seems so unfair to have so much taken away with nothing that you can do to fix it. Hurt, powerlessness, exhaustion, and guilt are part of the grieving about a loss that continues for years and only gets worse. How can anyone put on a happy face under those circumstances?

One of the lessons I’ve learned in the eight years of dealing with my husband’s Alzheimer’s, and subsequent paralyzing stroke, is that you do what you can not what others think you should do. Nor should you set arbitrary rules for yourself that lead to your own destruction. I wound up in the hospital two years ago because I thought I could do everything myself and somehow get through it. I was wrong. There are community organizations and counseling services that can help you. I have all of them bookmarked and have turned to them. 

Now my husband is in a long term care facility. I have more time to myself but I worry that our lifetime savings will be gone, even though I thought we had more than enough to see us through a glorious retirement. I don’t ask “why me?” S**t happens. My 100 year old mother is dying. Even my beagle has terminal cancer. I recently learned I need surgery, not serious I hope. The point is do what you can but don’t beat yourself up trying to fix the unfixable. This is not our fault.

sandwichone123

This is all great feedback, and good to follow. One thing I started doing was doing a few things my way. We had always gone where he wanted and did what he wanted to do, and I just started suggesting or just doing some of the things that fed me. Little things like not keeping the rug that way he wanted it, or going to my favorite place rather than his hangout *again*. Doesn't have to be big, just something you prefer.

Remember that if you're the only caregiver your #1 priority has.to.be. taking care of *you*. You are the only one holding the whole system together, so do something for yourself every day, even if he's on the toilet or there's grass to be mowed.

Also, if he worked many years after he needed to financially, there is hopefully the option of day care or hiring help.

Pat6177

 I’ve been on this forum for almost 1 1/2 years and there was someone that posted many months ago about not having the perfect marriage and there were A LOT of people that responded and said that they didn’t have great marriages either and had many resentments for things that had happened over the years. I am one of those folks. And there are times when my mind dwells on those resentments and I get really upset. But I love DH and I have chosen over the years to stay with him and I choose to stay and care for him now.  So I have to remind myself that I had my reasons to stay with him and I need to accept that I did the best that I could at the time. Being mad at him or at myself for accepting his selfishness is only going to make me miserable. So, I acknowledge and accept my anger and resentments. And that helps to keep them from poisoning my daily life.

Another thing I do to get an attitude adjustment is to practice an attitude of gratitude. One poster on here, Lady Texan, was very good at this. Her posts always included what she was grateful for that day and that reminded me of the value of gratitude. 

One last thing. Another poster recently placed her DH. In talking about the factors that fed into that decision, she said that she resented that her DH had always left everything for her to do over the years. Her DH was several years older than her and had enjoyed many years of retirement. So far, her retirement has been spent as a caregiver. So she wants to be able to have some of her retirement to be free from the 24/7 caregiving responsibilities. If you come to a point of considering if it’s time to place your DH, you may want to include this in your decision. We caregivers are entitled to have a life too.

I’m sorry that you are also dealing with lupus. Please try to take care of your health. I know, easier said than done. But if you don’t take care of your health, who will?

Pat

Berryette

I so want to thank all of you for taking the time to encourage and advise me.  I do need to find someone to talk all of this thru.  Maybe then I can let it go.  And in honor of Lady Texan- I am grateful I found this forum.  I can see the daily, even hourly, changes in his mood.  But using the words that his brain is dying helped me look at it in a different light.  And yes, Cecil, I was 21 when we began dating and he was 43.  We have been together for 37 years- things have pretty much always gone his way in our home.  That hasn't changed and I need to accept that it may never.  But I too now do some little things my way- for example, I will sit and read in a different room while he watches tv.  In the past, I would have sat with him because that was what he wanted.  In my reading this morning of Colossians 3:8  "But now is the time to get rid of anger...."  and 3:12  " clothe yourselves with tenderhearted mercy...." .  God was surely speaking to my heart and my poor attitude.  Thank you all for giving me a safe place to get this off of my chest!

Just Bill

This forum is a form of therapy for me. I don't have anyone in my life that is going through this I can relate to. Everyone asks hows it going ? But they really don't want to know and I don't want to spend hours explaining. I enjoy writing down my thoughts good or bad. It acts as a relief valve. It keeps my brain from going over the same things over and over it breaks up the thought loop. And there is a noticeable sense of non judgemental  community, you can say anything and feel overwhelming support. This forum is a part of my mental health program. Welcome and I am glad you you found it. And another opportunity to thank you all for being here and reading my ramblings.

Gig Harbor

Berryette I felt the same way that you do. My husband had a great 20 yr retirement while I continued to work and manage everything. I have had 4 years of retirement and during that time I have taken on everything. I made the decision to place him in June when I realized that I would be continuing to care for him for years to come and would have absolutely no retirement. He was starting to not recognize our house and occasionally not me. He was bored to death and didn’t seem to want to go for rides. His last day home he refused to go for a walk with his caregiver. In memory care he seems happy. He gets attention from the other residents and staff. I feel guilty for not keeping him home but not once has he asked about our home, our daughter or even his beloved dog. Our life here has ceased to exist for him and he only lives in the moment. 5 minutes after eating lunch he has no idea he ate or what he ate. It is a horrible disease but thanks to support from my daughter and friends I feel I made the right decision.

JC5

What a great post! There are so many out there who feel the same as you.  I too worked,took care of the house, three kids, dogs paid the bills, mowed the lawn painted the rooms when needed cooked every night etc.  all the while my DH worked till 7 , came home ate the dinner I made and left for meetings 4 nights a week for his volunteer organization. I did believe it was what a “good” wife did until I finally woke up.Things changed a bit but not much except for my attitude - I finally started doing things for me.  He retired 5 yrs. Before I did and still didn’t do anything! I retired 2 yrs. Ago and lo and behold 6 months later he was diagnosed with dementia! I thought as many here our retirement years would be different. I cry everyday i am resentful of what has happened and I am angry. So it is ok to feel these feelings. I cry I yell at the washing machine, I dry my eyes post on this great forum and realize this is what I have to do.

Berryette

JC5-  I'm sorry that we have this in common- but it helps to know others understand!!  I worked as a secretary in the ER.  Loved it and enjoyed helping others.  But quit and got a 9-5 job with no nights or weekends so I could be there for him.  This was years before dementia hit.  We began having issues when I did things myself.  Go shopping with a friend.  Play golf with my brother, etc.  I would know that there would be consequences.  I would be ignored for several days.  But finally, I decided that it was worth having a life other than sitting at home watching him watch tv.  Now- I cant leave him because of the dementia and we are right back where we were years ago. That is probably my biggest trigger- it feels like before- but it isnt because the circumstances are so different!   I do love him- but I am not in love with him.  And I will take the very best care of him that I am able.  It really does help being able to talk with you all!!

LilySue

I can’t imagine there is one spouse on this site who hasn't cried long and hard. I call these times my "pity parties" as I really do feel sorry for myself! Then there are other bouts of tears when I feel so sorry for my DH. He had a stroke 10 years ago that left him with total global aphasia, so he's been in a world of his own with no language whatsoever as the vascular dementia, and probably Lewy Bodies Dementia, has taken over. Now he's completely dependent for everything, hasn't known me for probably a year, and sleeps most of the time. (I have live-in caregivers and he has hospice.)

I remember one evening in particular about eight years ago when he was still walking around being difficult when I (regretfully) yelled at him saying, "Why does everything always have to be about you?" Oh, how naive I was! He had no idea he was making my life miserable, and I had no idea this was the whole future! 

I guess we get used to it . . . what's the alternative? I love him, but he's not anything like the person I married 55 years ago. He's a living breathing body, but that's all. No awareness of anything.

Yes, I cry. Just today I cried when the hospice social worker made her monthly visit. All this time, and yes, I still cry. And I will when he's gone. The price of love.