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I feel and act like it's the end of my life
JoseyWales
Posted: Tuesday, February 25, 2020 8:02 PM
Joined: 5/22/2016
Posts: 328


DH is late stage 5. He's 56. I'm 52. He spends all his time going through things in our house and trying to give them away / sell them because he knows he'll never use them again. Even things I want to keep, he says we'll never use because we're old. Every time I turn around, I'm reminded of how old I am and how my life is now over. I have to fight to keep my favorite things, and after time just get rid of them because it's not worth the fight. He's been at this for over 4 years now.

I just found out a co-worker is quitting her job to start a new career. She's 62. 10 years older than I am. It hit me - I'm not old. Now I'm just so depressed because I have nothing in my life to look forward to. I don't know how to plan for a future when I've spent so many years living like there isn't one.



ruthmendez
Posted: Thursday, February 27, 2020 11:14 PM
Joined: 9/8/2017
Posts: 2324


There are moments, and sometimes long periods, where the feeling is like this. But, we HAVE to keep moving. There is not much else, but keep moving. You never know what is around the corner. 

Your 62 year old co-worker is your hope. You have more to look forward to.  Someday you’ll be looking back, or remembering the past too. It will someday be behind you. We gotta keep going.

 


dutiful deb
Posted: Saturday, February 29, 2020 8:42 PM
Joined: 1/1/2012
Posts: 1891


I hear you. I'm 52 and my husband is 55. The entire decade of my 40's was spent caring for my mom, and even before she passed away, my husband began showing signs of impairment.  I've often wondered if this is how I am destined to spend my life.  There are times when I see my future looming ahead, full of endless paperwork and decision-making, dealing with hoarding and clutter, and listening to inappropriate jokes and mis-remembered stories.  Other days time seems short and I want to hang on to everything I can now because I know things change.

You're not alone! As Ruth said, we need to keep going. We have to! I like this quote by Elisabeth Eliot: When you don' t know what to do next, just do the thing in front of  you. 

 

 


JoseyWales
Posted: Sunday, March 1, 2020 4:30 PM
Joined: 5/22/2016
Posts: 328


Thanks to both of you. Keep going is about all I can do. I really need to make plans for my future. It seems so dark and it seems so hard to look past the darkness to what may come.

Deb - What a fantastic daughter you are. I can't imagine going through this twice. I don't know if it is good for you to know the path, or worse. I guess it's good to know what to put in place, paperwork wise.


MinutebyMinute
Posted: Friday, March 6, 2020 11:36 PM
Joined: 6/11/2019
Posts: 516


Josey-- I'm right between your age and your DH's. I cannot imagine GOING THROUGH THIS WITH A SPOUSE AT THIS AGE. I've been dismayed enough that this is how my mom is spending her 70s and I consider HER young for the stage of the game she's at.

I'm so sorry that this is where you find yourself. I'll share two things ...

When I first started down this path with my mom, one of the things I read advised caregivers to never stop planning. Think about things you will do when your tour of duty ends and even put pieces of it into place when you can while you're caregiving. Maybe you can find a way to hang onto at least some of the things you really want to keep!!! DEFINE some things for you to look forward to … and keep looking forward!

It's going to get darker and likely stay darker for some period of time. It probably won't be easy but find YOUR light.

And the second thing … you are NOT old! (If you are, that means I am, too.  If you're not offended by the language, for the last two years my mantra has been "Keep f*cking going." I saw it on a bracelet last year. It's on the inside, so as not to offend. I bought it last week. Just knowing that's there against my wrist can make me feel a little bit better.

Here's hoping you find your equivalent.  {{{HUGS}}}


jfkoc
Posted: Saturday, March 7, 2020 12:23 PM
Joined: 12/4/2011
Posts: 19544


I have been a widow for 4+ years and I want one of those bracelets!!!!
Battlebuddy
Posted: Sunday, March 8, 2020 7:49 PM
Joined: 12/10/2019
Posts: 153


Minute by Minute

That is very interesting advice- to keep planning. Sometimes I start doing that and feel guilty about not being in the moment with DH. Going to give myself permission to do it from now on.

 


dutiful deb
Posted: Wednesday, March 11, 2020 12:44 AM
Joined: 1/1/2012
Posts: 1891


Deb - What a fantastic daughter you are. I can't imagine going through this twice. I don't know if it is good for you to know the path, or worse. I guess it's good to know what to put in place, paperwork wise.

Thank you, Josey. I feel that  I'm more aware of what's happening and how to prepare because I have been through this before.  I have already begun putting things in place. I have taken steps to further my education because I know I may have to work past retirement, or change to another job in my field, as my husband's situation may require it. I also took the lead in getting our estate planning done, as well as getting things like HIPAA and POA in place. With my mom, I think I was more hopeful that I was wrong, or that things weren't so bad, but when I accepted reality, I was able to cope better (well, not really all the time, but accepting things helped me a lot). 

While my mom was in the hospital two months before she died, my husband paid some acquaintance of his $500.00 to use his yard out in the woods for our daughter's engagement party.  I had already decided to reserve a park with a gazebo, seating, tables, cooking areas, etc. had discussed it with everyone, and we were all on the same page. As part of the agreement to use this man's land, my husband had to hire and supervise someone to clean up the yard, which was a disaster.  We were restricted in what we could do, we had to bring in our own tables, chairs, and cooking grills. The man and his family left the place to us for the day, which was fine, but it was also uncomfortable not having anyone from the house around, especially as our guests had to use the man's home for the restroom and to wash hands.  We were not allowed to bring in a portable bathroom and there was no outdoor sink. 

 For that kind of money I could have hired a crew to clean and landscape my own yard.  I was angry, exhausted, and defeated, but I chose to let it go.  I filed it away as an "I have to get a handle on the finances" experience, as well as an "I am going to have to figure out how to make the decisions now".   We  had always shared these things but this was a sign that certain responsibilities  needed to shift. It was also the beginning of choosing my battles. After I let go of the anger, I was able to see this as one of those incidents where you just "know".  I also realized I wasn't really upset at my husband. He was trying to help. I was mad at the situation, and honestly mad at the man who, in my opinion, was an opportunist that saw my husband coming.  

There have been other experiences,  like the time we took a vacation to the Gulf Coast with my sister and her family, and as we were standing on the beach in Gulf Shores he informed me that he was going to come back, bring a kayak (we live in the Pacific Northwest) and launch it off that very beach to go fishing.  At first I thought he was was joking, but no, he was serious, and talked about it incessantly that whole trip and beyond. And the time my niece's car was stolen from the parking lot at her work by drug addicts who stripped it and pushed it over a cliff; he told me the "real story" is that she had secretly arranged to have her own car stolen from her driveway and trashed on purpose just to claim insurance money. This is so far fetched that when I heard it I was shocked. 

I tried to be a good daughter for my dementia-affected mom, and I like to think I did well. Now it's time to figure out how to be married to an impaired husband. I'm learning a great deal from reading your posts, Josey, and others in the same situation. When I feel discouraged, it helps to know there are others out there who understand. 


markus8174
Posted: Sunday, March 29, 2020 5:55 AM
Joined: 1/25/2018
Posts: 687


I'm struck every day by things we'll never do again. Take a trip, walk on the beach, eat at a nice restaurant, hike a couple of miles on a scenic trail, go to a family members birthday party, celebrate a holiday together, look to the future... All I can say is, perhaps your spouse is feeling the same way and is trying to simplify his environment. Are your resources adequate to rent a storage facility? Things your husband wishes to get rid of could be placed there. He gets a simplified environment, and you still have your things when you want them.
Littlelani
Posted: Monday, May 11, 2020 5:28 PM
Joined: 11/30/2018
Posts: 6


I'm only 44, but I feel this way too. I feel like my life is over. I quit my job and moved in with my parents 3 years ago to be my mom's primary caregiver. She had dementia and lived for 17 years after her initial diagnosis. She passed in January 2019. In early 2018, I started noticing the signs in my dad. Now I'm his primary caregiver. I am able to work part-time now, but I feel like I'm stuck. My sister is only 57, and I'm starting to see the symptoms in her too. By the time my father is gone, I'll be caring for her. Then by the time she's gone, I'll be starting to show signs. So, I really feel like there's nothing more to my life. This is all I will ever get to do. My goals and dreams have had to be abandoned in order to care for my family. And I'm grateful that I get this opportunity, but I didn't expect that it would be the only thing I ever did for the rest of my life. I try not to let it get to me, but sometimes it's overwhelming. Anyway, thanks for letting me rant.
JoseyWales
Posted: Monday, June 1, 2020 12:42 PM
Joined: 5/22/2016
Posts: 328


Marcus - I'm really late in getting back to this thread, but I think your idea of a storage unit is brilliant. We have many close by, and I just may rent one. 


John_inFlorida
Posted: Friday, November 13, 2020 6:37 AM
Joined: 11/6/2020
Posts: 22


I'm new here and this is my first post. Reading your post and the other responses just hit me. My DW is 72 and I am 63. She has vascular dementia and signs of Alzheimer's, starting around 2012. I've been though a period where she was giving her things away because she though she was going to die. Lots of clutter. Not able to plan for the future. Feeling isolated. Like my life is on on hold. Luckily she only has mild dementia, but I know the time is coming. I guess I dont even know what to say, just was moved by the responses here.
CStrope
Posted: Thursday, November 19, 2020 11:02 PM
Joined: 11/19/2020
Posts: 102


This is my first day posting messages and I too feel like my life is over.  My DH is just in the beginning stages of his diagnosis and I'm just so scared.  I'm 58, he is 66.  His MRI showed "substantial early dementia". though I'm not completely sure what that means.  We are still waiting for more testing, so I'm not really sure what is the situation. I have always been the strong one in our marriage.  I take care of everything and everyone. (we have 2 adult children)

Hubby retired from a lifetime of teaching 5 years ago, and I still work full time.  I had all sorts of plans as to things we would do together once I can retire, now those ideas will most likely be replaced with days of caregiving for him.

He absolutely refuses to believe that there is anything actually wrong with him.  He continues to tell me it's just normal aging.  I have always been a very social person, but we no longer associate with friends or have any social outlets.  Especially during COVID, we're pretty much just confined to our close area.  I am lucky enough to be able to work from home, so I can keep an eye on what he's doing.  I don't know how/when he will accept that he is having problems, so I don't know how to deal with that either.

We live in a very small rural community so there aren't a whole lot of opportunities for outside care to help alleviate some of my burden.


John_inFlorida
Posted: Friday, November 20, 2020 10:31 AM
Joined: 11/6/2020
Posts: 22


I now need to take care of everything as well.  My DW had a stroke which cause VD, and when tested she also showed signed of Alz.  She was diagnosed as mild but to me it seems like stage 5, although the doctor never talked about stages.

I retired early (I'm 63 and she's 72) partially because of all the doctor visits.  I too had thought that retirement would be fun with many things to do.  But the reality is that we cant do much of anything (worse due to virus).  Besides the dementia, she has congestive heart failure, so the least effort causes breathing issues.

At least she knows that she has problems, but constantly asks "what's wrong with me". As well as asking what day or month it is, over and over.  Also, talks about conversations that she thinks she's had with me that did not occur.  

We are in the same boat as far as not having any social outlets.  She doesn't seem to mind, but I miss that.

I'm worried about what's coming.

Reading these message boards are sometimes sad, but have lots of useful ideas.

good luck


Jane5220
Posted: Thursday, December 3, 2020 1:12 PM
Joined: 3/7/2018
Posts: 9


I didn't know there were so many others in my situation... once should be enough for any one person to suffer through a loved one's decline from Alzheimer's. I am caregiver for my 87 y/o mom (late moderate... I'd guess) and for my significant other (early onset, but definitely affected to the point he needs assistance with financial matters, sorting/taking meds, finding things in the house, etc.). The three of us live together. I still work, and we have a paid caregiver for several hours a day, but every evening and weekend its all me making decisions, cooking, doing household tasks, monitoring actions, repeating myself endlessly, and exercising patience through it all. I miss having meaningful conversations, and having a life outside of work and caregiving. 

I do keep my dreams alive, and hope and pray that I take after my father who died earlier this year at the ripe old age of 98, mentally intact to the end. I have a lot on a lake (5 hours away from where I currently live) where I plan to build my retirement cabin/home. The thought of that future definitely helps me keep my sanity. 

Sometimes I get so busy... and I haven't been on this board/site for quite some time. Going to visit it more often. Kind and supportive people here, and great advice. My best to all of you and your loved ones.