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How has being a caregiver changed you?
Lills
Posted: Tuesday, September 15, 2020 7:38 PM
Joined: 12/27/2017
Posts: 339


Today, I had new windows installed in my 3-season porch.  Although the installers did a fantastic job, they ordered the wrong grids.  Three of the large windows need to be replaced.  The 'before me' would have been totally upset but the 'since-being-a-caregiver me' just went with the flow. Meh, I'll think about it tomorrow   I shocked myself!  

 


Ed1937
Posted: Tuesday, September 15, 2020 8:37 PM
Joined: 4/2/2018
Posts: 3366


That happens. And you didn't stress yourself out. Good job.
Stuck in the middle
Posted: Tuesday, September 15, 2020 9:02 PM
Joined: 6/4/2017
Posts: 799


It's like the old joke.

"Ever been in a train wreck?"

"I don't know.  After being married to Andy, a little thing like that doesn't register."


Denny1
Posted: Wednesday, September 16, 2020 5:35 AM
Joined: 8/7/2020
Posts: 16


The changes used to be often and extreme.  Now I seem to be less concerned about physical matters, such as state of house etc, and when reading something in the news papers my reaction is 'so what?', not interested, can't be bothered.  Maybe that's because I can no longer discuss them with DH.  I've also become very protective of DH and I think this way of living with Alzheimer's has made me more assertive.  I've noticed it's unpredictable - but good for you not to let it stress you.
Ed1937
Posted: Wednesday, September 16, 2020 6:31 AM
Joined: 4/2/2018
Posts: 3366


In the caregiver world, I have become more forgiving and understanding. I have learned to pick my battles wisely. That's the positive side. On the negative side, I used to always seem to have been building something. The last thing I built was a landscaping island at the age of 80, 2 years ago. Always busy outside. I miss it. Now I am mostly inside with my wife.
Wyoaviator
Posted: Wednesday, September 16, 2020 4:10 PM
Joined: 8/7/2020
Posts: 45


I concur with Denny1. I don't have time (or energy) to worry about a lot of stuff that used to concern me.

I am also sooooo cognizant of my own decay and live in fear of of dementia hitting me.

 


mrl
Posted: Wednesday, September 16, 2020 5:54 PM
Joined: 12/4/2016
Posts: 33


Hi Lills,

 

Just wanted to say nice picture.

Michele


LadyTexan
Posted: Thursday, September 17, 2020 5:07 PM
Joined: 12/21/2018
Posts: 662


Congrats Lills.

I have noticed a similar change for me. I am more go with the flow now. I am less disturbed by life's hiccups because I am more focussed on what's important to me, which is caring for DH and myself and maintaining harmony in our household.

Sometimes I stumble and revert to my critical thinking self. But that generally results in unnecessary frustration.

I am more patient with DH than ever before.

I am less worried about things and more interested in memorable moments with my loved one.


CyberNaNa
Posted: Friday, September 18, 2020 5:59 AM
Joined: 12/6/2019
Posts: 27


Since my DH has declined -- or his confusion and memory are worse - I have seen myself change.  I'm to quick to snap when he says things or ask questions when I'm in the middle of paying bills, or something of the important nature.  His Mother, my MIL, had Alzheimers and I was her caregiver 99% of the time (he is an only child).  I could take care of her much better than I can my DH.  

When he starts talking 'crazy', I try to walk away and gain my composure.  But it seems as if lately it's more intense and just makes ME feel as if I'm going crazy!  Or, when he talks as if I'm just the maid or housekeeper, etc., I feel as if I'm going to explode.  When he treats me as if my existence doesn't matter (except to cook and clean), then I go into a quiet rage.

The few times during the week, I absolutely treasure 20 minutes driving to the post office!  Before those trips were mundane, but I look forward to that and plan them often!  However, I don't get to leave the house very often.  No telling what my house is like when I return.  I definitely do not like taking him anywhere with me!  However, I'll take him on short rides.  It seems to help break the monotony for him.

 


Doityourselfer
Posted: Friday, September 18, 2020 7:24 AM
Joined: 9/5/2017
Posts: 687


Being a caregiver for my husband has changed my thinking in that those who don't carry the burden of being in this type of situation are so lucky.  To be free is something I really look forward to - no more baggage to carry except my own.
Davegrant
Posted: Friday, September 18, 2020 10:01 AM
Joined: 6/20/2017
Posts: 56


I have a new sense of alert about everything that happens in the house. Where before there was two of us watching things it is now mostly me . I am like a night watchman keeping an eye on things. I have the safety issues, the meal preparation, the cleaning , the communications with adult children and the final decision maker. My DW is helpful and tries to be and is in many cases. This is different from our last 52 years where she managed the house and children. This creates for me an odd type of loneliness.
GA-Mom
Posted: Friday, September 18, 2020 12:16 PM
Joined: 2/17/2017
Posts: 136


I am more patient. And also more 'go-with-the-flow." I have enough to deal with in my own home, much less the rest of the world. All the political stuff going on - I'll vote with my feet in November. Fires in California - I'll donate to the Red Cross to help people there. Locally, once I can get my DH into respite care a few days, I'd like to do some volunteer work with a cause that is rewarding, like Humane Society, Habitat for Humanity, Red Cross. Something that takes my mind off DH and the future.
vernh
Posted: Friday, September 18, 2020 12:20 PM
Joined: 7/22/2020
Posts: 52


You cannot change your loved one, you can only change yourself.  And that's the key to being a successful caregiver.  Your old life is over, and you must adapt to your new life.
LC-FL
Posted: Friday, September 18, 2020 12:54 PM
Joined: 7/24/2020
Posts: 8


I guess because I'm in the beginning stages of all this, I just feel aggravated.  Working fulltime and then coming home to "I forgot this, or remind me" - I have so many other things to remember, adding this on makes me feel frustrated with my life...
Lills
Posted: Friday, September 18, 2020 3:58 PM
Joined: 12/27/2017
Posts: 339


I can identify with the comments.  For those who are frustrated, irritated, etc. with their LO, please know that these feelings may evolve with time.  I, too, had an angry year.  Everything DH did was annoying.  To name a few annoyances: He had zero empathy, he ate without manners, didn't say hello or goodbye when he left the house and 'forgot' to pay a few bills.  Multiply that by 100. Again, with TIME, I'm now able to enjoy the time I have left with DH.  As LadyTexan wrote, "I am less worried about things and more interested in memorable moments with my loved one."  I love that!
JDancer
Posted: Sunday, September 20, 2020 10:29 AM
Joined: 8/1/2020
Posts: 42


Yesterday I lost a precious necklace-lots of sentimental and monetary value. But compared to losing my DH bit by bit to dementia, it didn't seem like a big deal.
CyberNaNa
Posted: Wednesday, September 23, 2020 6:48 AM
Joined: 12/6/2019
Posts: 27


Lills wrote:
I can identify with the comments.  For those who are frustrated, irritated, etc. with their LO, please know that these feelings may evolve with time.  I, too, had an angry year.  Everything DH did was annoying.  To name a few annoyances: He had zero empathy, he ate without manners, didn't say hello or goodbye when he left the house and 'forgot' to pay a few bills.  Multiply that by 100. Again, with TIME, I'm now able to enjoy the time I have left with DH.  As LadyTexan wrote, "I am less worried about things and more interested in memorable moments with my loved one."  I love that!

When I read all these posts, I'm just trying to find some sort of relative connection.  But, your post was as if I'm reading my daily life.  I'm not necessarily angry, just irritated at the fact I'm doing this alone, when we have an adult child that only comes around once a month to talk about HER. and who states that her Dad is not as bad off as I claim, and that taking care of him is MY job!  OK!  I'll remember that one day!  When you mentioned zero empathy, eating without manners, and not even saying goodbye when leaving, hit me hard.  My DH is the EXACT same way!  

I try to give him kind reminders to let me know when he leaves the room to go clean up, or even going outside for his walk to please let me know.  I use the fact that what if I needed him (I had a birth defect and have a lot of problems with musculoskeletal issues) due to falling or whatever.  He agrees that he should tell me.  But, the next time, it's the same!  UGH!  I'm trying very hard to let it roll off!

I want this all to be over!



CyberNaNa
Posted: Wednesday, September 23, 2020 6:50 AM
Joined: 12/6/2019
Posts: 27


@Davegrant

I sure can relate.  I feel as if I'm trying to stay three steps ahead of my DH just to make sure I cover all possible scenarios before he does! 


JDancer
Posted: Friday, September 25, 2020 9:24 AM
Joined: 8/1/2020
Posts: 42


CyberNaNa;

I, too, took care of my M-I-L. I agree, it was so much easier than what I'm experiencing with DH. I would ask questions about her past and we could talk for hours. The stories she told me were a gift, even if they weren't all 100% accurate. We were very close.

I can't seem to find this comfort zone with DH. He's frustrated with questions, and becomes angry. I'm sure my approach is also different which adds to the problem. I know when he tells me something that isn't true and I'm bothered by it. I know  the problem is me- but it's a problem I just can't solve. 


CyberNaNa
Posted: Saturday, September 26, 2020 7:26 PM
Joined: 12/6/2019
Posts: 27


@JDancer

I'm truly sorry you are experiencing those issues with you DH.  How ironic it is that you and are have the same circumstances (MIL and Hubs).  My DH is so argumentative that it gives me a headache!  However, he thinks I'm the one arguing with HIM.  

A funny incident happened just a little while ago.  I was outside on the porch while he was still eating his supper (takes him forever to eat nowadays).  All of the sudden, I heard him yelling.  Couldn't tell what he was saying, but he was loud.  Nobody else was in the house.  So, I go inside to see what all the commotion is about.  Now, we are talking maybe a seven minute time span.  He didn't remember making any noise.  He said it was his pill containers (he was opening them to fill them).  Ummm....no!  They aren't that loud!  When I explained to him what I heard, he looked puzzled like I had lost MY mind!!

I find myself comparing his mom to him currently and see so much similarities.  I'll say "Do you remember when your Mom was doing ....".  He'll say he remembers.  I'll tell him "Well, you are doing the same thing".  He gives me the puzzled look!  I just want to throw my hands up in the air!!  It's 'arguments' all the time.  His Mom was different.  She accepted her diagnosis.  DH hasn't been diagnosed with Alzheimer's, but with MCI.  She would ask why she couldn't remember things and I would explain to her.  Him -- he's in denial.


ButterflyWings
Posted: Sunday, September 27, 2020 7:33 PM
Joined: 12/11/2018
Posts: 265


@CyberNaNa - It helped me to learn that my DH was not in denial, but that he (and many others) have something called anosognosia, which prevents them from comprehending they are ill. It is really "a thing", and not just with some PWD. Understanding this helped me be more patient with him, and adjust my expectations.

Anosognosia, also called "lack of insight," is a symptom of severe mental illness experienced by some that impairs a person's ability to understand and perceive his or her illness. It is the single largest reason why people with schizophrenia or bipolar disorder refuse medications or do not seek treatment. Long recognized in stroke, Alzheimer’s disease and other neurological conditions, studies of anosognosia in psychiatric disorders is producing a growing body of evidence of anatomical damage in the part of the brain involved with self-reflection.

https://www.treatmentadvocacycenter.org/key-issues/anosognosia



ButterflyWings
Posted: Sunday, September 27, 2020 7:43 PM
Joined: 12/11/2018
Posts: 265


@Lills - great question.

I am more aware of how precious time is, and far less concerned about how other people think I should be spending mine. Especially if they know nothing about AD and are not trying to learn (e.g. extended family). Other folks' "urgent and important" is their business, not mine. Reminds me of something I was told long ago: "you don't have to catch every ball that is thrown at you". I no longer even try. Too much on my plate with 24/7 caregiving of DH in stage 5/6 to care what folks think about my philosophy either.


CareGiverWife
Posted: Wednesday, September 30, 2020 5:51 AM
Joined: 9/19/2020
Posts: 18


How have my husbands Alzheimer’s change me?  Well, let’s be honest here.  My nerves are shot, I could careless about what I wear when I go out, I am not into cleaning the house either.  I am short tempered, raise my voice too often and hibernate in the bedroom most days to get away from it all.  If you thinking that most of what I post isn’t something you are doing right now I think it is denial.  We can’t just let things go, we just can’t say oh well, we just can’t sit back and let the anger slide by without feeling it in some form or another.  This is my opinion and I might offend someone out there in cyber land but let’s be truthful.  Not all of us can be kind and caring all day long.
CyberNaNa
Posted: Wednesday, September 30, 2020 7:53 AM
Joined: 12/6/2019
Posts: 27


ButterflyWings wrote:

@CyberNaNa - It helped me to learn that my DH was not in denial, but that he (and many others) have something called anosognosia, which prevents them from comprehending they are ill. It is really "a thing", and not just with some PWD. Understanding this helped me be more patient with him, and adjust my expectations.

Anosognosia, also called "lack of insight," is a symptom of severe mental illness experienced by some that impairs a person's ability to understand and perceive his or her illness. It is the single largest reason why people with schizophrenia or bipolar disorder refuse medications or do not seek treatment. Long recognized in stroke, Alzheimer’s disease and other neurological conditions, studies of anosognosia in psychiatric disorders is producing a growing body of evidence of anatomical damage in the part of the brain involved with self-reflection.

https://www.treatmentadvocacycenter.org/key-issues/anosognosia

@ButterflyWings

 Oh wow!!!  Thank you for that!  I can now understand why he is like he is!  Sigh!!



CyberNaNa
Posted: Wednesday, September 30, 2020 8:01 AM
Joined: 12/6/2019
Posts: 27


CareGiverWife wrote:
How have my husbands Alzheimer’s change me?  Well, let’s be honest here.  My nerves are shot, I could careless about what I wear when I go out, I am not into cleaning the house either.  I am short tempered, raise my voice too often and hibernate in the bedroom most days to get away from it all.  If you thinking that most of what I post isn’t something you are doing right now I think it is denial.  We can’t just let things go, we just can’t say oh well, we just can’t sit back and let the anger slide by without feeling it in some form or another.  This is my opinion and I might offend someone out there in cyber land but let’s be truthful.  Not all of us can be kind and caring all day long.
@CareGiverWife
Girl I can not agree with you more!!  What are we supposed to do when the medical field doesn't take it seriously and offer solutions/help to just leave it to us to tend with!  When I try to go to sleep at night, I hate myself for all the times during that day that I "lost it" due to his inability to get along, when he doesn't know that he's the stressor!  But it starts all over again the next morning....Same Story, Different Day.  Do you ever feel as if you are living in the movie GroundHog Day?  When I plan my day, I have to make sure I stay five steps ahead of him otherwise, it's all shot to HELL!  Being kind and caring to someone who treats you as if you are just a servant is difficult.  Yes, that person doesn't realize it.  But, still, let's be honest here.  Everyone has feelings!  Most days I can't leave the house for more than an hour.  If it's longer than that, I fear and question "What has he been doing while I'm gone?" and I'm usually in a tizzy within 30 minutes of being home!

Jeff86
Posted: Wednesday, September 30, 2020 8:47 AM
Joined: 10/24/2019
Posts: 305


This is a very thoughtful question.  It’s pretty nigh impossible to experience caregiving for a spouse or partner and not be changed by it.

My observations:  

 

  • my go-to mode of operating, professionally and personally, is to be a problem-solver.  To my dismay, whatever skill set I’ve developed in this regard is useless in the context of AD.  It defies solutions.
  • I’ve always thought I had deep reserves of patience.  AD has taught me the limits of those reserves.  The frustrations of dealing with my DW’s unlearning of basic functions and ADL’s—brushing teeth, washing hands, toileting—and the endless repetition of questions, and the shadowing.....combine to, at times, have me fall short, sometimes way short, of being my best self
  • While I’ve never been Mr. Tough Guy, this disease has made me more tender-hearted.  I am moved to tears when I read some of the posts here.  Likewise when I watch shows like “Call the Midwife.”  No suppressing of emotional responses!
Can’t say I love all these changes, but I guess increased self-awareness is a good thing.

 


CareGiverWife
Posted: Wednesday, September 30, 2020 11:56 AM
Joined: 9/19/2020
Posts: 18


@CyberNaNa. Some people, can’t see the damage that is being done to person who has to care for the Alzheimer’s person.  Thank you for seeing my viewpoint. It was and still is to,face my own inner feelings.  No one is living with me to see the real interactions.
CyberNaNa
Posted: Wednesday, September 30, 2020 12:25 PM
Joined: 12/6/2019
Posts: 27


@CareGiverWife

I agree with you about nobody sees the real interactions!  One daughter acts as if she cares and offers help and support, but never backs up her words with actions.  The other one, stays away and makes excuses for him!  So, I just don't keep her 'in the loop' as much!  Sad that our word as the caregiver isn't good enough.  Blessings to you!


CyberNaNa
Posted: Wednesday, September 30, 2020 12:35 PM
Joined: 12/6/2019
Posts: 27


@Jeff86

Being a caregiver to a spouse/partner is so difficult and demanding.  You can't be a spouse/partner and a caregiver.  The person affected with the illness doesn't see you that way.  That person sees you as the person who tends to everything -- cooking, cleaning, etc...not the "better half".  My DH spent 20 years in the military.  Once a soldier always a soldier, he used to say.  Until about five years ago, he still tended to his clothing in the same manner as he did in his younger days (i.e. folding, hanging, etc.).  Now, it's a good day if he gets a shirt hung straight or folds a pair of jeans nice and neat where they will fit in the space he has for them.  He won't wear anything he has to button because that is a nightmare for him.

We see a civilian Neurologist Oct. 13.  Finally.  He's stressing about it and causing all sorts of fuss about it (I don't connect to civilian doctors like I do with the ones at the Army hospital....he says).  Yeah, that's because they are at the Army hospital.  They don't give him the care that a civilian doctor will because he's retired and a veteran.  It's all about the active duty these days.  He refuses to use the VA clinic at the nearby base because he "heard negative things" about it.  Whatever floats your boat dude!  

We are going to the civilian Neurologist whether you like it or not!  I need answers and a good treatment plan.  The Army Neurologist isn't concerned about his failing memory or his confusion.  Nope...see you in six months!

Sorry for the novel...I need to vent!


Bholmes
Posted: Wednesday, September 30, 2020 3:53 PM
Joined: 2/24/2020
Posts: 142


I think several things have changed for me.

 

  1. First I am more patient than when this disease began, but my patients has limits which I eventually recognized. That recognition made me realize that I needed help caring for DW, I could not do this alone after 6 years.
  2. I have more empathy to other peoples problems. I had it before, but now I realize at times I was pretty shallow. This forum made me realize there are lots of people going through some extremely hard, scary, and sad circumstances. I also am here, and as hard as it can be for me, there are others who are in much more difficult circumstances.
  3. It took a long time to realize that logic, and trying to solve the problem through researching it, (i.e., you are not solving the problem because you are not asking the right questions) does not work with this disease. My DW brain is eroding and I or doctors cannot fix it. That was a hard, hard, truth for me to swallow - still is. My wife cannot understand things because her brain cannot process what I ask, she can barely talk, eats less, is scared of water. cusses at me like a sailor out of the blue, gets up for no reason that I can fathom in the middle of the night... the list goes on and on. I had to stop looking for reasons and just realize this is happening, this is "our" life now or I would be very ill/insane pretty soon.
  4. Lastly and this is a good thing that I have found out about myself. I loved my wife very dearly before Alzheimer's struck. We found each other late in life in some ways - I was 39 and she was 49 and we have no children, but we made a very happy life for our selves. I love her more now, not the person she has become...but the relationship from Husband to Wife has changed more to a point that I love her as a person who needs my help, needs my protection, needs my understanding - I love her more as a person than a wife now- it was strange when I first had these thoughts, as I am her husband, but I now understand that in order to help her, I needed to make sure DW was loved and cared for before caring about myself and our previous relationship. 

 


Denny1
Posted: Thursday, October 1, 2020 4:44 AM
Joined: 8/7/2020
Posts: 16


Bholmes

Not sure how to describe it, but I thought your point 4 is very meaningful and touching.