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Trapped, resentful and wanting out
Mike&BrendaTX
Posted: Wednesday, July 7, 2021 5:24 PM
Joined: 7/10/2017
Posts: 663


McCott,

Good to see you're still around on the board occasionally.  Hope you find a way to get out of the post-AD doldrums.

When my Brenda passed away in January, 2020, the hospice social worker recommended I see a therapist for grief counseling.  This was with a national company who only takes seniors, and Medicare pays for it completely.  To my surprise, my therapist was 73 years old (a year younger than me), and wow, was he good.  He gave me a lot of good advice and a lot of "homework" to do to get past "Mike the caregiver" and then concentrate on "Mike the Person" and what I wanted to do with the rest of my life.  For me, the homework was vastly therapeutic and got me going on what to do for the rest of my life. The company is Blue Moon Counseling (855-241-7160 - their HQ number but they will find someone near you anywhere in the US).  My therapist was Jerry Nicklen. I made sure I did all the homework and was much better after only 6 weeks.

I still occasionally give my power point talk about being a caregiver to interested groups.  Last Monday, I talked with a couple and her brother who had her father in the early stages of AD.  They e-mailed a few days later and said it really helped them to make some plans for the future.  It was nice to help others who I know are going to go through an impossibly tough time.

 As I've posted previously, I got remarried last year and we are having a wonderful life.  So from personal experience, there is life after Alzheimer's and I hope you find it, also.

Mike


CS 63
Posted: Wednesday, July 7, 2021 6:51 PM
Joined: 5/23/2021
Posts: 33


Wow, this post certainly has generated a lot of responses.  I can relate to many of the thoughts shared.  There are many, many days that I wish that my HWD would suffer a fatal episode, heart attack etc to put him out of the misery we are both living with.  His biggest fear was always cancer, his father died a painful death at 52.  If he knew now what he was living he would probably wish for cancer for a speedier end.  He always said in the early stages that he'd rather die than live like, so and so, who he knew had AD.  Now he doesn't realize how bad he is and wouldn't tell a medical professional to let him die if he was in distress. In fact, just the other night he was suffering with a low grade fever and terrible headache due to side effects of the covid vaccination.  I tried to convince him to take some Tylenol but no way would he take it.  He had to go to the hospital and that was that, he thought he was dying.  He didn't settle until I called the ambulance to take him to the ER at midnight.  The dr gave him an inflammatory to help with his head pain and it worked well. This afternoon he was having an angry episode, and all I could think of was this is it, I can't live with on pins and needles all the time wondering if it was going to be a happy day or ....?    After an afternoon of angry laying in bed I asked again if he had head pressure/headache and he finally said yes.   I gave him a couple of ibuprofen and the change was amazing.  Within a half hour he went from the angry pained look to relaxed and smiling. I guess he's still experiencing after effects od the vaccination.  

Anyway, I will still hope for some intervention to speed up this horrible journey but if I can keep him calm and easy going in the meantime it will help.


Stuck in the middle
Posted: Wednesday, July 7, 2021 7:15 PM
Joined: 6/4/2017
Posts: 2012


Gig Harbor wrote:

I am truly tired of being a caregiver. We went to a party for the 4th. Four couples and two men had Alzheimer’s and two didn’t. All four men came in and got drinks and sat and talked. The women had cooked everything and got all food ready to serve. Even the normal men sat there just waiting to be taken care of. I realize that we as wives enabled this behavior over the years but I am tired of it. I have told my daughter to never make this mistake. Expect equal participation. There are many men who do their share or more but none are in my group of friends.

.

Most of my father's family does this as part of their religion, one of the many branches of Protestant Christianity.  Those men don't refill their own coffee cups.  The women don't pay bills or balance checkbooks.  And there are a lot of other gender-defined rules.  There are lots of downsides to this arrangement, including the near helplessness of the survivor when one of them dies.  Imagine owning a business and not knowing how to write a check, or living alone and not knowing how to make coffee.  
My father deliberately married a woman who could think for herself, who had her own apartment, job, checkbook, etc.  So I wasn't reared that way or in that religion and don't expect to be taken care of.  That's good, because I sure don't get it.  The only people who fill my cup expect tips.

Stuck in the middle
Posted: Wednesday, July 7, 2021 7:22 PM
Joined: 6/4/2017
Posts: 2012


Mike&BrendaTX wrote:

As I've posted previously, I got remarried last year and we are having a wonderful life.  So from personal experience, there is life after Alzheimer's and I hope you find it, also.

 

Mike, thanks for sharing that.  I've said I wouldn't remarry at gunpoint, but maybe it isn't set in stone.


McCott
Posted: Thursday, July 8, 2021 9:34 PM
Joined: 8/22/2017
Posts: 531


For Mike -- I'm glad you had a good therapy experience.  Having been in therapy for many years earlier, I cannot imagine going back to that.  My real traumas are from my family of origin and my husband was the great relief from all of them.  So all I would have to talk about is that my biological family is bonkers and I have to pay to keep two of them off the street. I refuse to pay for the third basket case, for reasons I would not ever post -- terrible things.

I have the feeling that men remarry more easily than women, and I have like absolutely no interest.  I cannot even imagine thinking about it, besides which my son would kill me (now there's a reason to think about it : )  But I don't want him in jail, so that's that.


ButterflyWings
Posted: Friday, July 9, 2021 6:37 AM
Joined: 12/11/2018
Posts: 1093


Dear McCott,

Over 29,000 people have read this post/thread/topic of yours as of today, so please do not be embarrassed looking back on it. Obviously, you put into words something many felt, but had not said publicly. You and several others here welcomed me in 2018 when AD knocked on our door (knocking me down in the process) and I am SO appreciative of all the wonderful recommendations, perspectives, and your personal brand of wittiness. 

As to your last post, so does this mean you called it off? Thought I recalled you getting an impromptu proposal a while back, right? From gallant knight in shining (Harley?) armor...? I think you initially declined because you were still married lol, but...he could be waiting in the wings! Are you sure that's a no? It's been kind of crazy in my little caregiving world recently so I admit, I could be imagining all of this...or assigning it to you when it was another eligible friend, considering her escape... =) Seeking to lighten your mood for a moment today, as you have done for me, many many times just reading your posts. I hope your back gets better and that all the changes of 2020 bring a new phase of peace and joy for you, soon. Despite the relief of our PWD LOs release from this disease, there is surely grief and processing after the journey finally ends. Wishing you healing all the way around.

 


Dio
Posted: Saturday, May 21, 2022 11:36 PM
Joined: 5/11/2022
Posts: 67


OMG, I thought I was the only one who felt this way! Between the guilt and tears of despair, I don't know how I'm supposed to think or feel anymore. And my journey has just begun. How will I survive this?! And I know DH wouldn't want to live like this either. But his mind has already gone to another realm. Every now and then, I see fear, despair and pain on his face, and it just rips my heart to pieces. Last night he asked, "I'm never going to get well, am I?"

I know if I ever have dementia, I'll want my life to end quickly. I can't put anyone else through this, especially since we don't have children.

 


Joydean
Posted: Sunday, May 22, 2022 10:10 PM
Joined: 10/10/2021
Posts: 785


Dio, thank you for bringing this post up. I had not seen it and I had to read all 5 pages. It is amazing. Finally some real honesty. I too have had so many of the same thoughts.
Quilting brings calm
Posted: Sunday, May 22, 2022 11:30 PM
Joined: 10/16/2020
Posts: 1110


Well, I read all five pages.    I found it enlightening that I didn’t recognize most of the posters from 2018.   Maybe their caregiving days are over.  I found it interesting that the original poster felt that everyone was sweetness and light.  I certainly don’t feel that people on this forum sugarcoat the reality of their life. 

I certainly relate to the title of the thread. It’s been a depressing weekend.   I feel like I’m dying from the inside out ( I know that’s physically not the case).    I desperately want out/ having my parents in assisted living isn’t enough of a separation, .  Yet I can’t get out,  the only one left standing would then  be my sons, I can’t do that to my sons.  And I’d be ashamed that they saw their mom walk away from a responsibility,  Also sets a bad precedent for my future,  I’m going  to go willingly into assisted living when the time comes 


DrinaJGB
Posted: Monday, May 23, 2022 9:39 AM
Joined: 6/23/2021
Posts: 450


McCott--

 Twelve years ago this July my DH was life flighted to the medical center with what they thought was a stroke. Three days later he went into multiple organ failure and was intubated and placed on life support. MRI revealed no stroke but a rare form of viral encephalitis.

  He had less then a 20% chance of survival.It was a surreal world watching him daily and wondering if he would awaken and how he would be.The delay in diagnosis lead to extensive brain damage. 

I had just lost my brother and only sibling to a shocking death weeks before who had to be taken off life support because it was hopeless. I was caring for my father who had heart failure.

AS my world imploded all I could do was stand and watch.

While DH was still hospitalized (4 months) I learned his sisters had developed a scheme to hijack his rightful inheritance.They did not think he would survive and did not want his wife of 30 years, or daughter to get access to his own inheritance, but wanted to split it up among themselves.

  So there I was with my DH of 30 years who had awakened confused and shockingly altered, and who had had his inheritance stolen by his own family members. They had bribed a lawyer to change an IRREVOCABLE trust which was prohibited by the trust instrument. I had to hire a lawyer on top of dealing with my critically ill DH I had absolutely no help from his family. The mother was dying and confused.

Fast forward 12 years and he now has mixed dementia but is holding his own. The legal chaos is still not resolved, but there is at least light at the end of the tunnel now. It has cost me everything.

As a result I am no longer a real person, but merely a machine who goes about on a daily basis doing every single thing that must be done. There are nearly 9,000 emails between our attorney and myself. I get no real answers from his doctors, so I have no idea how much longer I will be shouldering all of these responsibilities.

I feel betrayed by the medical community, the legal community, my in-laws who never express any concern  or offer any help for their brother, our own daughter who wishes to remain on the fringes and is so critical of everything I do, but yet offers no help. I am completely alone in this futile fight for our lives.

I have wanted to walk away, change my identity and my life so many times now I have lost count over the years. The only thing that keeps me going is my dogs and my garden.

I, too, have had polyps removed recently that were pre- cancerous. I have to return now in 3 years for another colonoscopy. I chalk it up to stress. I follow a Mediterranean diet and have not eaten red meat in over 20 years.

  I have had suicidal thoughts off and on, but I know I could never do that to my daughter even though she has irritated the hell out of me with her judgements, criticisms and absences.

  I do completely understand what can take a person to that threshold of complete and utter despair,however, and when Naomi Judd committed suicide I totally got it.I understood.

I think the most irrational thought I have had over the years is feeling betrayed by my DH---who has left me abandoned to pick up the pieces and handle it all. I am Queen of damned near everything ---and I am worn out.

  He wears me out.

Carry on (because what else can we really do???)....

dj

 


nancyj194
Posted: Monday, May 23, 2022 9:56 AM
Joined: 11/28/2016
Posts: 223


It was so helpful to read this, then I realized it was the year I joined, but then left after being attacked by someone on here. When I did venture back, it was to just read the posts over the years.  Only recently have I tried posting anything.  

Thank you McCott, I am forever grateful for you and being able to say what you feel.  I wish you peace and happiness.  

Also thank you for those who are willing to give positive feedback.  

 

 

 

 


Paris20
Posted: Monday, May 23, 2022 2:29 PM
Joined: 5/30/2019
Posts: 416


I just want to add one more comment to this long-lasting thread. I also find the people on these boards to be nice, kind, and friendly. HOWEVER, I also find them to be honest, supportive, and informative, more-so than any other site I’ve visited.  Sometimes the honesty is painful because that is what we are dealing with, but it’s always presented within the context of compassion and empathy. Being nice doesn’t mean being fake.
Reaching Out
Posted: Tuesday, May 24, 2022 6:28 PM
Joined: 12/11/2020
Posts: 9


Take a moment minute to think about what he is feeling and thinking.  I have lashed out like you until realizing that this disease causes as much pain to the person as it does to us.
dayn2nite2
Posted: Tuesday, May 24, 2022 6:44 PM
Joined: 6/20/2016
Posts: 3203


McCott's spouse passed away some time ago, but she severely injured her back in caring for him prior to that.

She comes back sometimes, hopefully she will see that words she wrote have helped people even today.
 
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