Aging parents - this is hard. Anyone else?

[Spryte]

It’s not what I imagined, that’s for sure.  I imagined a phone call in the night. A heart attack, a stroke.  A cancer diagnosis with appointments and everything that can follow with that. I imagined a clear cut diagnosis of some sort, a period of time with many doctors - months, maybe a year.

What I didn’t imagine is the agonizingly slow, prolonged decline and the multitude of diagnoses that accompany it.  The loss of dignity, the loss of filters, the loss of patience and the ability to see past the four walls around them.  It breaks my heart to see someone with a low pain tolerance dealing with such pain, to see a former athlete in a wheelchair for years, and now losing all mobility.  And to see the other parent, the one who was always the caretaker, slipping further and further into dementia... it’s hard. My heart hurts for them.  My heart hurts for DH.

This isn’t new.  We are in year 7, I think, of care. It’s just the hardest year we’ve had thus far.  In the past 12 mos we’ve had nine major hospitalizations between the two of them.  The multiple appointments and follow ups and devices installed and calls from their (new) facility.  They both need higher levels of assisted living than even a few months ago.  Sometimes we get a reprieve, and there’s a week or two without an emergency, but more often than not there is something urgent happening.

I feel sad.  And sometimes I feel bad that I can’t do more, be more helpful, be there every day.  They are high maintenance and it never feels like enough, whatever we do.

 

 

 

[sigh] ...just needed to let that out.

 

 

[gardenmom5]

hugs.

I was the sandwich filling.  my mom - and an undiagnosed toddler aspie.

after years of dealing with her resistance, then my brother trying to take control, I finally got her somewhere stable and she was happy.    she died shortly afterwards.

[Innisfree]

8 minutes ago, gardenmom5 said:

hugs.

I was the sandwich filling.  my mom - and an undiagnosed toddler aspie.

Yep. I had this exactly. It does last for years, and it is very, very hard. I still tend to shy away from threads like this-- I think I'm traumatized, lol.

For me, both parents needed significant help, in different ways, for years. My mother had dementia, with accompanying hallucinations which were beyond awful. My father was lucid, but in pain and physical decline. My toddler was an undiagnosed force of nature, who was a fifth grader by the time they died. They finally died nine months apart, with dd's diagnosis coming in between. It was ... quite a year.

I'm sorry you are dealing with this. It changes us, I think. I know what you mean about never being able to do enough. There is always more they need. But then, finally, there isn't anything more you can do, and you wish you could.

[Annie G]

Innisfree is so right- it changes you.  When you’re doing all you can but it’s never enough, it changes you. We’re almost 9 months past mil’s passing...dementia with awful hallucinations and also painful cancer. I struggled to cope with why God would foist that upon such a sweet woman.  It has also changed our relationship with fil and dh’s only sibling. It just sucked all around. 

Hugs to you, op.  It’s hard. 

[Spryte]

It’s hard to imagine a time when we won’t be doing, doing, doing, and I don’t want to even contemplate that.  I’d rather keep doing, even when it feels like not enough. 

I am trying not to focus on the ... I don’t know the right word here - irony?  Injustice?  ... it feels like both parents have ended up dealing with something that pushes their buttons.  Like the one who is least pain tolerant has something extremely painful, and the one who’s always been the rock who remembers and does everything has dementia.  It feels like both have symptoms in an area that is their weakness.  Seeing the changes to their personalities has been agonizing.  It’s hard to process it all.

It absolutely is changing us. And it’s tiring.

I know we’re not alone in this, and want to thank you all for sharing your stories - it helps to hear we have company.  Especially with the kid stuff.  It’s very difficult to juggle it all, and we have kids who are high needs as well.  That, plus DH traveling for work a lot.  It feels like whatever we do, we have ten urgent things on hold.

Thanks for listening.

[Guest]

I am so sorry. Yes, it is hard. In some ways, it begins to seem like “that friend of mine whose parent died unexpectedly of cardiac arrest was lucky...” 

Just remember, whatever is going on in this moment, it will change. It will not be the same forever. It may be harder, or easier, or it may end abruptly or slowly, but it will not be the same forever. Sometimes, when things are painful, it helps (me) to remember that - nothing stays the same. 

[Spryte]

3 minutes ago, Quill said:

I am so sorry. Yes, it is hard. In some ways, it begins to seem like “that friend of mine whose parent died unexpectedly of cardiac arrest was lucky...” 

Just remember, whatever is going on in this moment, it will change. It will not be the same forever. It may be harder, or easier, or it may end abruptly or slowly, but it will not be the same forever. Sometimes, when things are painful, it helps (me) to remember that - nothing stays the same. 

 

That helps.  Thank you.

[RootAnn]

Hugs. The trench carefare (my version of trench warfare and caretaking) is soul-sucking and I still have one well parent (who is showing early signs of dementia). I am fortunate that 1) my dad's most precipitous decline was quick (a year), 2) my sister took on the majority of the day to day issues, and 3) we didn't have lots of other issues that same timeframe. If it would have come anytime in the last two years, it would have been so much worse.

My aunt had multiple strokes 9 years ago- mind still sharp but in a wheelchair that whole time. She's lamented many times that people have forgotten about her and she should have died already. Tough seeing someone who cared for and about so many people being forgotten and neglected by so many. (My sister manages most of her care decisions and day to day finances.)

Alzheimer's runs in our family. It is a marathon of decline, usually.

[RootAnn]

The only positive side (if there is any) to my aunt is that there won't be any fighting over her money. She was a spinster and all the nieces and nephews considered themselves to be the rightful heirs. But, with nine years of nursing home care, it is all gone. No fight over money that is gone.

My brother died last summer and there is already much hate and disagreement amongst his ex-wife (she divorced him to marry another guy), kids, and the sibling who was the beneficiary of his life insurance policy. I don't know what is worse - watching the slow decline of his health over years or watching the painful ripping apart of the family over years.

[Hoggirl]

I think we are about to enter this season with my in-laws. He is 82 and she 79. He is extremely stubborn, and I see much resistance brewing. 

I lost both of my parents at the age of 24 and will never experience going through this process with them.  I don’t really feel lucky, though. 

[G5052]

Yes, it's tough. I went through it with my parents and an irresponsible sibling who was in charge. Both at least died in hospice and were professionally cared for.

Then I went through with another close family member until they moved away. They have both physical and mental problems and shouldn't be living alone with no family near by, but they have chosen that. Now family members down that way have to drive three hours each way to help them and take leave from work. I would have to fly to get there. It doesn't reflect reality at all.

I pray that I am gracious and reasonable when I hit that point of life. A dear friend of mine in her 70's recently died in her sleep and was perfectly fine the day before. What a mercy!

[goldberry]

I am so sorry. My parents are 87 and 85, mom has dementia.  My mom is the hard one.  I keep thinking I'm dealing with it and then something, a sentence, a comment, will just kick me in the heart and I have pain like she's already dead, because I've already lost her.  

((hugs))  Growing old just sucks.

[AnneBlessedx4]

It is hard.  Harder than raising kids, I think.  We lost my dad almost six years ago on my birthday due to COPD.  He also had a myriad of very hard diagnoses. 

Now all 4 of the remaining parents are having problems--including cancer, ALS, Parkinsons...and some other major stuff.  2 parents are here and 2 parents are 2 hrs away but could be here where we could help.  It is horrible. Our family (extended) has been through the ringer for several years.  I guess it will stop someday.  :( 

[G5052]

9 minutes ago, Margaret in CO said:

I'm on the other end of this. All our parents are gone, but dh and I are the ones that are starting to need the help. Dh has Stage IV melanoma, and we'll find out in 10 days or so if it's metastasized to his brain. He doesn't make sense a lot of the time, hyperfocusing on things that just don't matter. He's still in complete denial. I just went through 3 eye surgeries, and am looking at a 4th. However, they weren't very successful. I went 8 weeks of no driving, and having to be in a car that dh is driving is not fun. He will NOT follow Google maps or spoken directions, but just gets mad and claims that everyone has moved things--businesses that have been there for many years. He's convinced he knows his way around Boulder, etc. but doesn't. I'm glad we just got ds graduated and Commissioned. I think it's starting to hit him--he said wistfully, "I wonder when we'll see T again". Well, maybe Christmas. It's what kids do--they grow up and leave. It hasn't occurred to him that dd is the next to be deployed. 

 

I'm sorry to hear that. More than difficult for you to be struggling yourself and then having an ill husband. You'll be in my thoughts.

[PrincessMommy]

24 minutes ago, Margaret in CO said:

I'm on the other end of this. All our parents are gone, but dh and I are the ones that are starting to need the help. Dh has Stage IV melanoma, and we'll find out in 10 days or so if it's metastasized to his brain. He doesn't make sense a lot of the time, hyperfocusing on things that just don't matter. He's still in complete denial. I just went through 3 eye surgeries, and am looking at a 4th. However, they weren't very successful. I went 8 weeks of no driving, and having to be in a car that dh is driving is not fun. He will NOT follow Google maps or spoken directions, but just gets mad and claims that everyone has moved things--businesses that have been there for many years. He's convinced he knows his way around Boulder, etc. but doesn't. I'm glad we just got ds graduated and Commissioned. I think it's starting to hit him--he said wistfully, "I wonder when we'll see T again". Well, maybe Christmas. It's what kids do--they grow up and leave. It hasn't occurred to him that dd is the next to be deployed. 

Hugs.. that's so hard.

I had  a rough week last week with dh.  He's 5 yrs away from his car accident and severe concussion.  He's never quite been the same but mostly he's okay.  Last week it seemed to all come crashing down.  He's better again this week but it made me realize once again how fragile the brain is and how much our "golden years" may be very different than I envisioned when I was nearly married.

Agreeing with the OP.  Watching the slow decline and humiliation of aging parents is heart-wrenching.  I keep asking myself,... why do we  work so hard  to live longer??!!   Give me a quick out with pneumonia at 80 please.  

[Guest]

53 minutes ago, AnneBlessedx4 said:

It is hard.  Harder than raising kids, I think.  We lost my dad almost six years ago on my birthday due to COPD.  He also had a myriad of very hard diagnoses. 

Now all 4 of the remaining parents are having problems--including cancer, ALS, Parkinsons...and some other major stuff.  2 parents are here and 2 parents are 2 hrs away but could be here where we could help.  It is horrible. Our family (extended) has been through the ringer for several years.  I guess it will stop someday.  ?

In raising kids, you are (normally) looking forward to their future selves and what they can become (obviously different if child is not developing typically). With aging parents, you can usually only see decline and a loss of all the wonderful talents and skills they once had. That is what is so disheartening. 

[Spryte]

1 minute ago, Quill said:

In raising kids, you are (normally) looking forward to their future selves and what they can become (obviously different if child is not developing typically). With aging parents, you can usually only see decline and a loss of all the wonderful talents and skills they once had. That is what is so disheartening. 

 

Yes. That’s it.  That’s a big part of the pain.

[G5052]

6 minutes ago, Quill said:

In raising kids, you are (normally) looking forward to their future selves and what they can become (obviously different if child is not developing typically). With aging parents, you can usually only see decline and a loss of all the wonderful talents and skills they once had. That is what is so disheartening. 

 

That's what is hard with my current situation. The person is not acting at all the way they were and believes that somehow things will be OK on their own. There's also a "timebomb" medical issue that has never been addressed.

[Guest]

12 minutes ago, PrincessMommy said:

Hugs.. that's so hard.

I had  a rough week last week with dh.  He's 5 yrs away from his car accident and severe concussion.  He's never quite been the same but mostly he's okay.  Last week it seemed to all come crashing down.  He's better again this week but it made me realize once again how fragile the brain is and how much our "golden years" may be very different than I envisioned when I was nearly married.

Agreeing with the OP.  Watching the slow decline and humiliation of aging parents is heart-wrenching.  I keep asking myself,... why do we  work so hard  to live longer??!!   Give me a quick out with pneumonia at 80 please.  

I have started thinking this, too. I used to want to live to be 100. I also used to think MIL had it so good (she did at the time). When she turned 80, she had so many checkmarks in the “positive” category. And she would do all sorts of things specifically to “exercise her brain” - she would play piano specifically to exercise her brain and keep her hands limber, she would do puzzles and we sang in a church choir together. She planted her garden and canned her tomatoes and made amazing dinners. But then her hands curled up anyway and the piano ended. And her arms got too sore so no more hoeing and weeding gardens. And several TIAs robbed her of some of her memory, so puzzles became moot - it was hard enough just to have a normal conversation. Joints deteriorate; muscles atrophy. Then, the less used they are, the more useless they become. Now I think, “I don’t want to be 92 one day.” 

It has been hard to witness, partially because I am the same way, always thinking, “I’m going to do this to exercise my brain” or “I’ll do this so my balance does not decline.” But when the clock winds down, it just winds down and you have to accept the limitations. It’s sad. 

[Ottakee]

My MIL just passed away but it was at 72 from pancreatic cancer.  There was caregiving before diagnosis but she was in OK health.  It was hard as I had no help from other family (there isn't any).

I have often said that I don't fear death, it is the dying part I want to skip.   Like someone above said, I hear the stories of tragic car accidents where 80s husband's and wife were both killed instantly and I don't think that is a terrible.way to go.

I am a big one for appropriate medical care/intervention but not heroics that only prolong death and don't save a life.

[Spryte]

This has, for sure, made me think long and hard about aging.  

Makes Thelma and Louise’ing it look mighty tempting.  ?  (No, not really, do I need to clarify that I’m joking?  Joking.  But seriously don’t want to age quite so painfully.)

[Chris in VA]

My parents are 85 and nearly 86. Mom is physically declining and Dad is, I think, slightly off. It's hard because they live very far away and I don't know if that will change or get even worse. 

I'm sorry, Spryte, that you have such a full plate and such a lot of pain in your heart as you witness your folks aging. What a good daughter you are. ❤️

 

[Kareni]

Sadly, I have no words of wisdom nor a magic wand to offer.  Sending sympathy and good thoughts your way.

Regards,
Kareni

[ScoutTN]

I am right there with you and it is so hard. Definitely sandwiched, since Dh and I are in our 50s, our kids are 11 and 13, and our parents are in their 80s. 

We are not as far on this road as you are, Spryte. In the last year or two my mom has gone from a reasonably active, clear-thinking person to one who has very limited mobility, is beginning to have memory issues and be confused, and needs tons of help just to do ordinary things. She is fighting hard, but losing the battle. I am not sure she has really acknowledged the reality of the situation. She has lived in denial of many things, emotionally, for a long time. I am glad that she is here and not far way, although I know that the demands on me will continue to increase. I have a sibling who is super helpful and knowledgeable, but lives on the other side of the country. No other family.

My stepdad died 7 years ago and my mom went into a tailspin afterwards. That was the first crisis and just the very, very beginning.  

My dad died of lung cancer when I was 31. Very quick and I did get to say goodbye, but still so hard. He never met my Dh or our kids. 

I totally agree that I would rather go quickly than live to an old, old age. Dh's grandmother was 96 when she died and could barely see or hear - so terribly alone. As an older parent, I pray often that Dh and I would live to see our kids truly launched. Ideal would be to get to know some grandkids and be a fun Grandma, then quickly go home to Jesus. 

We will not have caretaking responsibilities for my inlaws because they have two daughters who live here and will handle all that. I really feel for those of you who have multiple sets of parents/elders to care for.

 

[dirty ethel rackham]

We went through something similar with my mom and later  with FIL.  Both were still pretty OK mentally, but their bodies were failing them ... all too slowly and all too quickly at the same time.  Both had DNRs, but it was so hard to decide when was too much care.  My mom would have liked it to be several tests earlier, but those tests gave us the definitive answer that there was nothing more to be done.  Same with FIL but there was also the complication of the pacemaker keeping him alive.  

I am so sorry you are going through this.  It is such a stressful time full of anxiety and heartache.  

[Garga]

My parents moved 2500 miles away from me. The only family they live nearby is a sister and brother-in-law who are a decade older than themselves. Other than that, they have only aquaintances and no church family.

And now they’re suddenly both having serious foot and back issues. My dad has to use a walker everywhere he goes, even from room to room. My mother has to wear a foot brace and her other foot is acting up now and causing pain.

My mother’s two oldest sisters have been declining from alzheimers for years and aren’t expected to live out the summer. My mother is terrified she and her nearby sister will get it, too.

I’m 2500 miles away.  We don’t have a lot of money.  I can do nothing to help them.  We’re due for our every-other-year visit next month.  My dad has a list of the things he needs help with when we are there for the 10 days, like changing a light bulb on their front porch, because neither of them can do ordinary things like that anymore.  

I can’t take care of them for only 10 days every other year.  I don’t know what I’m supposed to be doing from across a continent to prepare for the decline that’s already starting.

I’m sorry, OP.  This whole thing depresses me for you, for all the other people who’ve posted, and for my own family.  

[iamonlyone]

Yes, it's hard. And some of you have been walking this particular path much longer than I did. I had a broken period of five years of caring for a parent's needs and children's needs. It started when my strong, independent dad had a massive stroke at 81. I was the person who was responsible for the decisions and the many hospital, rehab, and care facility plans and visits for the 18 months before he passed. We had almost a year without parent crisis before my mom was diagnosed with pancreatic cancer. She lived two hours' drive from us; I met her for chemo appointments, and she lived some at our home and some at hers, when I would drive back and forth to help. She did have wonderful friends locally who helped her as well. She passed away in October. The first four years of that time, our teenage son was in crisis, and we were fighting for his health and safety. These were the years our youngest was in 8th-12th grade.

It does change you. Eight months after my dad passed away, at Christmas, I was laughing really hard and suddenly realized how odd that felt. I couldn't remember belly laughing since my dad's stroke 2.5 years before. Our youngest was the one who was right in the middle of everything. (The older two graduated and were out of the house before my mom's diagnosis.) She is lovely and compassionate. I believe her character is richer and deeper for caring for and loving her grandparents. But she graduates Saturday and won't have any extended family there, and she is sad about that. She tried on her graduation dress for my mom last fall so my mom could see her in it—and they both cried, knowing they would not be celebrating graduation together.

OP, I guess my experience was the cut-and-dried diagnosis you don't have. I'm so sorry for the added difficulties your situation brings.

[solascriptura]

I am so so sorry to all of you struggling with this.  I have relatives struggling with this very issue.  I cannot help but wonder what the aging relatives would have wanted if they knew what their future (now) held for them.  

 

A few doctor friends of mine strongly recommended the following book.  I plan on reading it this summer.

https://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/1250076226/ref=sr_1_1?ie=UTF8&qid=1526414622&sr=8-1&keywords=being+mortal

[PrincessMommy]

17 hours ago, solascriptura said:

I am so so sorry to all of you struggling with this.  I have relatives struggling with this very issue.  I cannot help but wonder what the aging relatives would have wanted if they knew what their future (now) held for them.  

 

A few doctor friends of mine strongly recommended the following book.  I plan on reading it this summer.

https://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/1250076226/ref=sr_1_1?ie=UTF8&qid=1526414622&sr=8-1&keywords=being+mortal

I agree. It's a great book.  I also highly recommend "How We Die" by Nuland.