RSS Feed Print
mom and I are not better, not worse - just here, waiting
CodyW
Posted: Saturday, March 30, 2019 4:31 PM
Joined: 4/5/2013
Posts: 836


Hello friends, 

Just popping in to say hello and give an update.   My mother just had her 2 year anniversary in skilled care, and 8 year anniversary in the CCRC (continuing care retirement community.)  Previously she was 2 years in Independent Living, 2 years in regular AL, and 2 years in MC AL.  During the 5 years prior to the CCRC I assisted with things like large purchases, travel, finances and medical care.  

My mother was fiercely independent, having lived and traveled on her own since 1978.  During her long and slow decline, she fought me with all her might.  But now, at age 88, she is non-ambulatory, double incontinent, and has severe aphasia.  She generally feeds herself with finger food, but relies on others for all her other ADLs.  I no longer get any sense that she recognizes me.  The direct care staff report that she is less resistant to their care.  We've been on a long journey, but I do not feel the end is near.  My mother will cling to life like a barnacle and experience every last stage of this wretched disease.  She has been very unhappy for many years.  

At this point my "hard work" is mostly done.  My mother's possessions and finances are down to the basics.  Her daily care is provided by the SNF.   Funeral and burial services are prearranged.  I still advocate for her, attend care conferences, supply her personal items, launder her clothes, and take her outside when the weather permits.  But I get no pleasure from my caregiving, and often find myself wasting time procrastinating at home when it's time to go see her.   It is very rare for anyone else to visit her, and people have stopped asking me about her.  My siblings live >300 miles away, as do all but one of her grandchildren.  Her life and care is my responsibility, an ironic situation for a least favored child to be in.  My mother and I did not have a warm relationship, but I suppose we've each done the best we could.

My annual physical includes a depression screening, and I scored as having mild symptoms.  As a result I've met with an MSW counselor a few times.  She's encouraged me to emotionally detach without guilt or regret, and focus on self-care.  I'm am trying to do that but's it's easier said than done.   After putting other people's needs ahead of my own for so, so many years, now I must push through apathy and sadness to find my own joy again.  It feels so foreign.

Months ago I solicited opinions for a little booby-prize reward for enduring a particularly awful episode, and you guys gave lots of nice opinions and encouragement.  The winner was a nice mother-daughter weekend for me and MY daughter at a lovely historic mountain resort in Bedford Springs PA.  We hiked and used the spa and ate in their nice restaurants.  It was lovely.

I recently read Bad Blood by John Carreyrou and Empire of the Summer Moon by S.C. Gwynne.  Too much time had gone by without reading, so it was a real treat to burrow into both books.  I transported my double kayak to a rack at the lake and it's ready to launch, alone or with a friend.  I'm collecting larger pots for my houseplants prior to setting them loose to grow on the patio.  "Hello Fresh" meal delivery service has introduced new recipes to our table, and it is fun to cook the same meal over Skype with my daughter 1-2 times a month.   We have a family vacation planned for May.  I found a good yoga UTube series for beginners.  These are some of the things I'm grateful for.  

I hope you other caregivers have moments of joy in your daily lives, and things to feel grateful for.  Thanks for all the wisdom and encouragement you've given me over the years.

CodyW


Mimi S.
Posted: Saturday, March 30, 2019 4:47 PM
Joined: 11/29/2011
Posts: 7036


Hi Cody,

Thanks for the update.

What I hear you saying is that your mom is merely existing and has no quality of life.

I am a PWD and have thought about that same situation for myself. 

Since at that time, I would no longer be able to make my own decisions, I have instructed my family to consult with my docs and gradually withdraw all meds, except those that make me comfortable.  I have so many coexisting conditions that should take care of the situation.  If your mom is healthy that is not an option.

I am glad you are seeing a counsellor, hopefully it's someone who understands dementia. Finding other activities is a great idea.

Do keep in touch.


CodyW
Posted: Saturday, March 30, 2019 4:55 PM
Joined: 4/5/2013
Posts: 836


Yes Mimi, my mom is otherwise very healthy so she will not pass away for a reason unrelated to her dementia.
jfkoc
Posted: Saturday, March 30, 2019 6:42 PM
Joined: 12/4/2011
Posts: 17053


Always nice to get an update .....also a reminder for me to find a book to burrow into
TessC
Posted: Saturday, March 30, 2019 10:30 PM
Joined: 4/1/2014
Posts: 4819


Good to hear from you and to learn your mother is being well cared for and that you are doing what you can to get back your life and to find joy and peace. Good luck and take care!
Vik
Posted: Sunday, March 31, 2019 9:44 AM
Joined: 2/26/2019
Posts: 172


Mimi, i, too, am PWD, and hav made plans for my late stage dementia. I hav lived a good life, but hav also developed some serious health issues bfor the dementia diagnosis. So, from the research and forum postings on this site, ive decided i dont want to live in late stage dementia.  

So, from what ive read, in late stage it is difficult to swallow. I do NOT want to b fed puree food or hav a stomach tube! I also don't want people to hav to feed me!  So ive decided, and hav it down in writing), that when i can NO LONGER feed myself, or not willing to eat, i want all food and water to b withheld. 

I watched a friend's mom do this when she had a terminal disease.  She was in hospice care, so she didnt hav much pain as they kept her sedated. She had decided what SHE WANTED to do in her circumstances!  It was a peaceful end of life for her, and also for her loved ones!  She passed in 4 days instead of living miserably for months.

I hav seen too many people live their last months in severe pain. I saw my grandfather with dementia live in a nursing home for months where he didn't recognize his wife or relatives.  He also didn't communicate at all, so his end of life was SAD, not only for him, but for all his loved ones!  Thats why i want to discontinue food and water when i am in late stage dementia. That is not living, and i hav lived a good life. 


King Boo
Posted: Sunday, March 31, 2019 11:55 AM
Joined: 1/9/2012
Posts: 3011


Hi CodyW-

I am here or there occasionally on the boards, but for some reason, going up 152 the other day, wondered about you.

We were in Bedford Springs this summer at the same resort.

You are in discouraging days, when there is little yield back to give pleasure - only the steady plodding of putting one foot in front of the other - grim knowledge you are doing what you can and are supposed to do.   This will be important in healing, one day in the future, as hard as it is now.  Having peace that you did what you could, will one day help.

I love the "Hello Fresh" over Skype idea. . .tucking this one away for future use!


CodyW
Posted: Sunday, March 31, 2019 10:02 PM
Joined: 4/5/2013
Posts: 836


TessC, thank you for your kindness.

Vik, you are wise to make your wishes known in such detail.  My mother completed a living will 20 years ago, and I intend to follow it.  Her living will forbids tube feedings but is silent on the issue of hand feeding.  Her diet will be modified as recommended by the SNF's speech and language pathologist.  I suppose that as long as my mother opens her mouth and swallows, she will continue to be nourished.  Eating seems to be something she still enjoys.  The SNF has been told that I want hospice when the time comes.

King Boo, your encouraging words are a great comfort.  I will read them many times.  Thank you.  


LicketyGlitz
Posted: Sunday, March 31, 2019 11:13 PM
Joined: 2/3/2018
Posts: 402


Thanks, Cody, for sharing your update. It's good to know where the road ahead may take us, and I appreciate your candor about where you and your mom are at.

I have a trilogy recommendation for you if you haven't yet read them: The Broken Earth Trilogy by NK Jemisin. If you give 'em a read I hope you fall as fully into them as I did!


mostlyme
Posted: Monday, April 1, 2019 1:25 AM
Joined: 12/17/2018
Posts: 220


Hi Cody,

Thank you for this post.  I nodded throughout as I read it.  I, too, am the least favoured child and the burden of care falls to me.  

I've noticed this trend as I read posts.  The 'golden children' aren't there in the end.  I wonder why?  Maybe we're still looking for their approval.  I don't feel that way but maybe my inner child does.  Hmmm.  

For me, this need to make everything OK and to make sure Mom is happy has been lifelong.  Alzeimer's exacerbates it, but it was there before.  Mom told me that she had me so I would take care of her and so it goes.  I have been taking care of her all of my adult life.  I have always been trying to pull away from this hold but resigned to it once she was diagnosed.  

The past few months I have been looking for freedom again.  I feel as though I've been swallowed after 5 years of doing this.  I have lost my joy and with no end in sight, I have become numb.  

I had my first counselling appointment about this this week.  He gave me an exercise to do as I still feel nervous when Mom gets upset.  He told me to expect that she will be upset when I say I am leaving after a visit but use that knowledge to distance myself from it.  So it would look something like this... "I will see you later Mom, I'm off to do some grocery shopping now."  If Mom responds with something like 'what do you mean you're leaving?  You're not leaving me here alone are you?  I want you to stay.'  Then I'm to expect it and choose to protect myself and distance myself from the pull by being aware and saying something like "We did have a nice visit today didn't we?  We'll have another nice time tomorrow when I come.  I'll bring chocolates!"  And then smile, wave and go. 

For me, it's the guilt that gets me and that need to make sure she's happy.  The counselor suggested that I need to make sure I'm happy too.  

Care giving is weird.  I know it doesn't suck the life out of everyone but it does for me.  I think it's because of where I came from and how it pulls on those wounds.

I know, ultimately, that this has been a blessing.  I have learned so much about our weird co-dependent relationship.  I don't blame my mother at all.  She had her challenges and needing others is her coping strategy.  

Although...  the counselor also said that the challenge people face when they are healing is not having a balanced viewpoint.  Some people blame others too much, and other people are the opposite and feel that they are the ones who have failed to live up to the expectations placed on them.  Those who blame need to let go and realize that they are now adults with a responsibility to themselves to come to terms with their hurts.  And the others need to recognize the hurt that happened to them and stop feeling that they are to blame for the unhappiness that others feel.  It's just opposite sides of the same coin.  One person feels anger, the other feels guilt.

I wish you all the best Cody.  I hope that feeding yourself becomes less foreign every day.


vaeagen
Posted: Monday, April 1, 2019 7:26 AM
Joined: 4/4/2016
Posts: 153


CodyW....I just had to respond since your post struck a nerve....I have been caring for my dmil (and by extention my dfil, 85 and 87 respectively) for about 5 years now. Dmil has been relatively well till about the last 6-9 months....she was accepted into hospice about 2 weeks ago but I feel like this is never going to end. She has "rallied" and I "fear" she will be dropped in 6 weeks. She just goes on and on. I feel guilty for wanting it to finally end for all of us. Dmil is miserable and either sleeps or calls for help. It seems that 50% of the nights she is up all night....upset and asking for all sorts of things or having all sorts of "problems". It is awful and seems like it is NEVER going to end. I knew you all would understand and not judge me as a "bad" person for wanting her and us to have peace. But instead it just goes on and on....

 

                     Valerie


CodyW
Posted: Monday, April 1, 2019 10:49 AM
Joined: 4/5/2013
Posts: 836


mostlyme wrote:

 I, too, am the least favoured child and the burden of care falls to me.  I've noticed this trend as I read posts.  The 'golden children' aren't there in the end.  I wonder why?  Maybe we're still looking for their approval....

I've noticed this trend as well and have wondered about it too.  Many parents will give disproportionate time and attention to their neediest child.  Those neediest children rarely grow into the most dependable and altruistic adults in the family.  That scenario does not explain MY mother's preferential treatment, but I've seen the dynamic played out in other families.

Care giving is weird.  I know it doesn't suck the life out of everyone but it does for me.  I think it's because of where I came from and how it pulls on those wounds.

Oh yeah - my mother's early dementia scraped old wounds open time and time again, which presented a huge challenge for both of us.  The familiarity of her nasty comments made it difficult to stay objective and recognize her behaviors as part of the disease. 

I don't blame my mother at all.  She had her challenges...

Good decision.  My mom's inability to forgive has compounded her unhappiness.  I don't want to repeat her mistake of nurturing old grievances.

Some people blame others too much, and other people are the opposite and feel that they are the ones who have failed to live up to the expectations placed on them. ...  

Wow - those are some powerful words of wisdom.  My mom fell into the first camp of someone who blamed others for all her life's disappointments.  I gave up seeking her approval while still a teenager because that approval was simply never gonna happen.  In some respects it was a gift to be freed from her expectations.  

Because of  my upbringing, I consistently encourage caregivers to not make their LO's happiness the ultimate prize.  I know that attitude can come across as insensitive to a PWD and other caregivers, but everyone has to approach their caregiving role within the context of their personal situation. 


CodyW
Posted: Monday, April 1, 2019 11:12 AM
Joined: 4/5/2013
Posts: 836


vaeagen wrote:

It is awful and seems like it is NEVER going to end. I knew you all would understand and not judge me as a "bad" person for wanting her and us to have peace. But instead it just goes on and on....

Valerie - No judgments from me, that's for sure.  I try to make my mom's life as peaceful and pleasant as possible under the circumstances, but some things just can't be fixed.  I'm certainly not going to seek any course of action, or inaction, that will hasten her demise, but I'll follow her living will.  She has a DNR.  Hospice will come on board at the appropriate time.  She will continue to get an annual flu shot and the best nursing care I can arrange.

Her time of passing is out of my hands, and no amount of me either wanting or dreading the day will change the outcome.   


Eric L
Posted: Monday, April 1, 2019 11:39 AM
Joined: 12/5/2014
Posts: 1049


Watching this caregiving thing play out with our family, I will say that it has made me realize that even though I am not super close with my parents (my Mom wasn't very nice to me when I was a teenager and I was "the good kid"), if I ever had to be in a situation where I had to care for either of my parents, I wouldn't resent doing it. For the most part (teenaged years aside), my parents were usually very good to me and I know that part of my Mom's issues were that they were barely hanging on financially and emotionally.

My wife on the other hand resents her Mom very much. She often says that she has put more into caring for her Mom the last few years than her Mom ever did for her. My in-laws raised their children well, but it is very clear that my wife's brother was the favorite. Whenever life got difficult, my wife was shipped off to her grandparent's house (though brother wasn't). My wife has said many times that she wishes that she would have treated her Mom the same way when this whole process started (shipped her off to someone else). They don't really have any sort of mother-daughter bond and I'm pretty sure that my wife bonded more with her grandmother than she did with her own Mom.

Even though we probably still do more hours of care than her brother does, he is still around and we can at least count his as a reliable partner in this whole mess.
vaeagen
Posted: Monday, April 1, 2019 12:21 PM
Joined: 4/4/2016
Posts: 153


CodyW,

 Again you have hit it right on the head with me. I love my dmil very much, truth be told more than I love d my own mother, but there is nothing I can do right now to make her happy. The days of making her happy are over. She was a very pleasant and loving woman who cared deeply for everyone in her family but this disease had made her a person who is only interested in herself. I know it is the disease and not her but she does not have any capacity to put herself in someone else's shoes  or to enjoy anything anymore. Making her comfortable is even difficult sometimes not, especially at night.

Since, in general she is very health...I can see this going on and on....I really don't know how you folks do this for a decade or more. I have been only doing this for about 5 years now (the last year being when things started to get more intense) and I don't know how I would be able to do it for another 5+ years.

 

                   Valerie


King Boo
Posted: Monday, April 1, 2019 2:04 PM
Joined: 1/9/2012
Posts: 3011


SDP22, to start your own thread, click on add post after signing in.  It will get responses that way, rather than being buried in someone elses thread.
lizziepooh
Posted: Friday, July 12, 2019 11:15 PM
Joined: 5/2/2019
Posts: 117


I am not sure why this old thread was brought back up but I am glad it did.

I quite enjoyed reading everyone’s comment.

And I wonder how Codyw feels now in hindsight.


CodyW
Posted: Sunday, July 14, 2019 4:35 PM
Joined: 4/5/2013
Posts: 836


Lizziepooh, 

When a responder deletes or edits their comment, the entire thread gets pushed to the top.  Perhaps that's why this thread popped back up.  

There have been no significant changes.  Mom's disease has progressed as a slow steady downward glide.  Mom's language is mostly nonsense.  The vast majority of her clear words and phrases are negative.   She sits with her eyes closed more often than not.  I asked hospice to evaluate my mom last month and they said she is not ready.   I will ask for her to be reevaluated by a different agency in a few months.  I predict she will lose her ability to self feed in less than a year, then refuse to be hand fed but continue to drink her ensure.   It would be a crying shame if hospice refused to accept her until she reached that point.

I'm doing okay, more good days than bad.

CodyW


lizziepooh
Posted: Wednesday, July 17, 2019 10:11 PM
Joined: 5/2/2019
Posts: 117


CodyW wrote:

 

My annual physical includes a depression screening, and I scored as having mild symptoms.  ...

I hope you other caregivers have moments of joy in your daily lives, and things to feel grateful for.  Thanks for all the wisdom and encouragement you've given me over the years.

CodyW

And how are you doing with this? As time has dragged on, has this gotten any easier? Has it gotten worse?