How are your older folks doing?

[Seasider]

Creekland, FaithManor, Laura Corin... How are things going? How are you all holding up?

[creekland]

Today is my mom's first big appt with the specialist at the teaching hospital - PET scan and meeting 9 doctors.  Hubby and I are here with her (she wants us here - we want to be here - win/win).  Time will tell.  We leave for the hospital in an hour.

 

Hubby's mom (the one with very advanced Alzheimers) continues to decline.  She's unable to control bodily functions now, and of course, her memory is almost totally shot, though she still retains some recognition ability.  Fortunately, FIL has relented and now gets some in home help allowing him short times away.  We're hoping/expecting to get to see them shortly after Christmas.  Hubby and the boys will anyway.  The question is whether I'll go or stay with my mom.  We're all going to be with my mom for Christmas.  His mom can't tell the days apart and his dad is perfectly fine with shifting to fit.

 

I'm really glad our families are sane and no one feels the "need" to insist on certain days for certain things at all times.  Flexibility is so key to living real life.

 

Ok, most of our families are sane.  There's still my dad.  He wavers between sane and not - as he always has.  His last phone call to me really bugged me.  One minute (tops) mentioning how sorry he is about mom and 40+ minutes spent trying to convince me my nephew is on drugs (nephew is the current "out" relative in his mind - nothing good can be happening) and how awful he (Dad) is feeling along with the typical "all that is wrong about the world and right with him" talk.  (sigh)  Mom & Dad are divorced and have been since I was 11.  Still... his focus on himself is so annoying given the circumstances.

 

ps  Thanks for asking.  'Tis a rather stressful time TBH.

Edited December 21, 2016 by creekland

[Laura Corin]

Thanks for asking.  That's sweet of you.

 

Mum's not doing badly.  Her furniture arrived from the old house to furnish her room - that could have gone either way (regret or pleasure) but she seems pretty happy.  She's been busy writing Christmas cards and her mood is pretty buoyant.  She spontaneously came to say goodnight last night and blew us kisses - for such a dour and negative person, that's enormous.  Her health is not too bad and her hearing aids aren't bothering us too much.

 

Most importantly, I think that she is gaining some acceptance about her failing memory.  She trusts us when we tell her that she has simply forgotten something, rather than getting angry that 'no one tells [her] anything'.  That's very positive. 

 

The family is doing okay.  I feel as if I've been neglecting Hobbes, but I have some time off over the next couple of weeks, so I'm going to try to get on top of that a bit.  My emotions are a bit raw after this past year (Mum, another serious family illness, Brexit, Trump).  Husband brought something up the other day that made me feel desperate for 24 hours.  Not his fault: we are both just feeling fragile.

[Seasider]

Today is my mom's first big appt with the specialist at the teaching hospital - PET scan and meeting 9 doctors. Hubby and I are here with her (she wants us here - we want to be here - win/win). Time will tell. We leave for the hospital in an hour.

 

Hubby's mom (the one with very advanced Alzheimers) continues to decline. She's unable to control bodily functions now, and of course, her memory is almost totally shot, though she still retains some recognition ability. Fortunately, FIL has relented and now gets some in home help allowing him short times away. We're hoping/expecting to get to see them shortly after Christmas. Hubby and the boys will anyway. The question is whether I'll go or stay with my mom. We're all going to be with my mom for Christmas. His mom can't tell the days apart and his dad is perfectly fine with shifting to fit.

 

I'm really glad our families are sane and no one feels the "need" to insist on certain days for certain things at all times. Flexibility is so key to living real life.

 

Ok, most of our families are sane. There's still my dad. He wavers between sane and not - as he always has. His last phone call to me really bugged me. One minute (tops) mentioning how sorry he is about mom and 40+ minutes spent trying to convince me my nephew is on drugs (nephew is the current "out" relative in his mind - nothing good can be happening) and how awful he (Dad) is feeling along with the typical "all that is wrong about the world and right with him" talk. (sigh) Mom & Dad are divorced and have been since I was 11. Still... his focus on himself is so annoying given the circumstances.

 

ps Thanks for asking. 'Tis a rather stressful time TBH.

I am glad to hear your FIL has consented to help! That's huge! Breaks the ice, maybe, for an increasing level of help as things progress. It does sound like your mil is moving quickly through late stage dementia.

 

I pray your mom gets lots of information today to enable the family and care team to develop and administer an effective plan of treatment.

 

You are being stretched in so many directions - I think of you often!

[Seasider]

Thanks for asking. That's sweet of you.

 

Mum's not doing badly. Her furniture arrived from the old house to furnish her room - that could have gone either way (regret or pleasure) but she seems pretty happy. She's been busy writing Christmas cards and her mood is pretty buoyant. She spontaneously came to say goodnight last night and blew us kisses - for such a dour and negative person, that's enormous. Her health is not too bad and her hearing aids aren't bothering us too much.

 

Most importantly, I think that she is gaining some acceptance about her failing memory. She trusts us when we tell her that she has simply forgotten something, rather than getting angry that 'no one tells [her] anything'. That's very positive.

 

The family is doing okay. I feel as if I've been neglecting Hobbes, but I have some time off over the next couple of weeks, so I'm going to try to get on top of that a bit. My emotions are a bit raw after this past year (Mum, another serious family illness, Brexit, Trump). Husband brought something up the other day that made me feel desperate for 24 hours. Not his fault: we are both just feeling fragile.

It sounds like your mother is finally adjusting to the new situation. How long has it been now that she's been with you? Are you getting past the point of feeling like you have to meet her approval? (It's an assumption on my part, something I think can be common between daughters and something I catch myself falling into after spending too much close time with my own critical and particular mother.)

 

Like creekland, you are also being stretched; you between generations with very different needs and norms. Ten years down the road, what do you think your kids might express about the whole arrangement? Do you think they understand how challenging it is for you?

[creekland]

I pray your mom gets lots of information today to enable the family and care team to develop and administer an effective plan of treatment.

 

Unfortunately, my mom's news is not good.  The PET scan showed suspicious spots on her liver near the tumor.  Those are going to be investigated by an MRI.  If they are cancerous, there is nothing they can really do for this type of cancer.  It will be classified as Stage IV and not many live longer than a year.

 

That said, the PET scan is not super clear, so they are doing the MRI.  We hold out hope the MRI will show those spots as just weird blood vessels or something unimportant.  IF so, then she'll need an endoscopic ultrasound to determine between Stage IIA or IIB.  In those cases, there is an almost 50% chance of long term survival.

 

'Tis tough news to take when someone is otherwise feeling fine.  On a pain scale when she was asked she's at a 0 today.  I rarely/never get down to 0.  She's in otherwise good health for someone 73 years of age.  Life just sucks sometimes I suppose.

 

It's not supposed to have any sort of genetic connection, so I'm thinking I'm off the hook even if I have more symptoms of this than she does (I also have other options to be causing mine due to the BT).

 

This is the third case of this rare cancer coming from her hometown recently/now - second with the same doctor.  It makes me wonder what might be lurking there.  Dow Chemical has a plant in Canada upriver from the city's water intake.  They used to dump things directly in the river saying it wouldn't affect a thing.  Our minds naturally wonder though...

 

I refuse to give up hope that she will be in the better odds category.  It's obviously tough news on her brain.  We all wish the MRI could be tomorrow, but they have to get insurance approval :cursing: , then schedule it, so are telling us 7-10 days.  We don't want it done elsewhere as they have better machines here.

 

Overall, I give high kudos to this team at Upstate Medical Center in Syracuse.  I really like her doctors there and everyone else she's come in contact with.  I wish I could give our insurance system the boot, but I've always felt that way.  

[hornblower]

I'm sorry your news is not better, creekland. 

[G5052]

Sorry to highjack some, but thank you for remembering those of us who are caregivers.

 

I've always struggled with holiday preparations amid the ongoing chaos, and this year has been more difficult than most. I'm seriously worn to a frazzle driving DH and to-and-from work and all of the appointments. If he weren't retiring at the end of the month, I don't know what I'd do.

 

Monday we went back to the surgeon on his November surgery. He's progressing, but still has several weeks until he can drive. No PT yet, but thankfully the surgeon cancelled the January surgery despite DH's protests. Inward I was so thrilled. I couldn't take another surgery right now. The doctor said maybe February, but probably March at the earliest. I can handle March.

 

Yesterday I needed a complete break, so I binge-watched The Man in the High Castle most of the day after dropping him off at work and had DS pick him up.

 

Today he called from work mid-morning, extremely sick. I had to go get him and take him to the doctor, and it's gone into his lungs. He told me to stay in the car because there were so many in the waiting room, and then afterwards told me that he nearly passed out several times waiting. He told me that he couldn't remember any of his medications or who our primary care doctor is. But we had squabbled in the car about him being sick, and I was happy to have some peace sitting in the car for an hour. When we got home, he threw up in the laundry room.

 

Tomorrow I have to take him to an out-of-state appointment on another issue. We tried to cancel, but it's time-sensitive and has to be done either this week or the next. I voted for next week, but DH told them we'd come to the original appointment. He's very stressed about finishing his work projects and wants next week clear. 

 

Frankly I think he should just bag it now and take leave until his separation date. There I said it.

 

Anyway, I took a long nap this afternoon, and my perspective is better. Thanks for listening!

[Luckymama]

Oh Creekland I'm sorry today's news wasn't the best :grouphug: My mother's ovarian cancer spread to her liver.

 

G5052, I am always impressed by your strength.

[Guest]

I'm glad to hear from all of you and am praying for those with hard news right now :(

[Annie G]

G5052,  :grouphug:  

 

Same to you, Creekland, Laura, and the rest.  

[mominco]

:grouphug:  :grouphug:  :grouphug:  To you all!

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[FaithManor]

Thank you so much for asking!

Creekland G5052, many many hugs.

 

My mother's husband is home from the hospital. He was on IV antibiotics foe dour more days, and I was pretty mad that they expected my mom to take training and deal with it at her age and frailty. He should have been sent to a nursing home or rehab. She would not stand up to them and if you knew me IRL you would know that in my best of circumstances I do not handle that level of medical stuff well. I am no natural born nurse and when it comes to human medicine skeeve out easily...animals fine, people not so much. My mother insisted on handling it, and even if he were a decent human and I was inclined, would not have been able to be there 24/7 so somehow she managed it. My dear mil, the retired nursing professor, checked in several times. She is a sweetie. I love her dearly.

 

My sister is here from France so things are weird. She resents me for not living there full time and ignoring my family and their needs. Sigh...so she does this surgary, passive aggressive talking to me face on, then goes off in the corner and smack talks about me to my brother and his wife. Oh well. Whatever. I do not share personal information with her, nor get pulled into her issues. At this point though, mom is much more relaxed because she has her baby around.

 

I bought my mom two beautiful sweaters, a new top, a skirt, and two pair of pants plus a set of pjamas for Christmas. I will thrift store later for more items. For him, to well just have my conscience clear, I got hom a pair od no skid slippers, set of 100% cotton pajamas since he does not like flannel, a David McCullough book that he does not have in his collection, and a new hat for wearing to his appointments because his was raggedy. I got them a 100 dollar gift card to the local supermarket as well. They do not know that my hubs prepaid some propane.

 

It is the best I can do.

 

Mom is going to likely go through some even worse stuff soon. Her younger sister was just diagnosed as terminal from metastasized colon cancer that is now in her liver and pancreas. So when it rains, it pours.

 

She cannot drive on these roads and he can't be left alone so I think after the holidays I will find someone I can hire to care for him and take her to see her sister who lives four hours away.

[hornblower]

I have happier news on my front. My MIL was released from hospital today. She had had a pretty urgent bowel resection surgery after they discovered a large mass on a completely unrelated CT scan.  

I'm still unclear (because SIL is useless at getting & communicating medical info) what the mass was but apparently it either was benign, or if it wasn't, it hasn't spread because apparently she will not need chemo or any more surgery. 

 

The surgery went fine but she developed post operative delirium and that prolonged her stay.  She's finally back to herself & they've discharged her.

We're hopeful she'll be well enough for a family dinner at my house on the 25th. 

[creekland]

Sorry to highjack some, but thank you for remembering those of us who are caregivers.

 

Hijacking?  You're not hijacking!  This thread is designed for all of us to share (or that's what I thought anyway). 

 

Sending  :grouphug: and best wishes for a good day today (and more, but at least a good day in there).

[creekland]

Oh Creekland I'm sorry today's news wasn't the best :grouphug: My mother's ovarian cancer spread to her liver.

 

G5052, I am always impressed by your strength.

 

I added a like, but I wanted to add  :grouphug: too.  The Hive needs a  :grouphug: button.

[creekland]

Faith, sorry to hear how your family (extended) is treating you still, and sorry to hear about your aunt's diagnosis.  I think you've done "right" by buying gifts.  With my dad it always helps me to know I've held up my traditional daughter "stuff" even though he fails at many traditional dad "stuff."  I don't want eye for an eye.

 

Hornblower - glad your news is better and hope she makes it to dinner!

 

Laura - hope your time off is enjoyable and glad your mom is adjusting.

[G5052]

Hijacking?  You're not hijacking!  This thread is designed for all of us to share (or that's what I thought anyway). 

 

Sending  :grouphug: and best wishes for a good day today (and more, but at least a good day in there).

 

Thanks. Mine is a husband, not a parent, so I sort of felt off there.

 

Early in the week I was in yoga, and she did a little more than usual on the meditative side, thinking toward 2017. My first thought -- I want a peaceful, normal life. This last year has been so difficult with DH. The medical issues (5 surgeries) and increasing dementia have been over-the-top. After twelve years of his medical problems, I hardly know what normal is. I got a taste of it when I took the teens on vacation for ten days and left DH at home. The three of us felt so much more balanced when we were away. We visited the area where I grew up and where my father's side was from, and it was very healing. The whole time I wondered if we'd come home and find that DH had moved out because he had been talking that way, but he was home and relatively peaceful. I think he even missed us.

 

In November they adjusted his medications, and the agitation and combativeness has eased. He's mostly loggy now and naps and watches TV when he's home. That's certainly better than where we were. Today we go back for another medication adjustment, and I'm guessing that they'll increase them. So he'll be even more out of it when he retires next week. I guess that's good.

 

I probably should have made an appointment with my therapist last week, but I was so busy. She's out-of-town visiting her grandchildren until January. She always sets me straight. Our teens love her too. At my last appointment, she discussed all of the possible scenarios ahead, and we worked out various strategies. I get teary thinking about how she's helped us over the last decade.

 

Anyway, thanks for the kind words. Thankfully I have several local friends who understand too.

[creekland]

Thanks. Mine is a husband, not a parent, so I sort of felt off there.

 

Personally, I think it's close enough.  TBH I think it's more difficult for you.  Parents we know will eventually pass on.  That's the way life "works" even if it sucks in the process.  My mom is 73 - older than many moms live (but MIL is 86, so I am a little jealous).  I want more good years as we love life together and I really don't want to see her suffer on her way out, but it's still "what happens sometimes."

 

 We know that about spouses too (50/50 chance pending who goes first), but it just seems like it shouldn't be happening now.  We're all too young!  Many  :grouphug: go out to you as you go through this journey that is not yours by choice.

 

Ditto that for others who are in similar boats.

[madteaparty]

Hugs to everyone. You are all goddesses to me.

[Seasider]

It is good to read all your updates - understanding that it's not all good news - and I am waiting to get back to a computer to reply at length (phones are too frustrating for length and multiquotes).

 

G5052, of course you are welcome here! And hornblower, and anyone else in the position of being a primary caregiver for an adult who is no longer able to care for themselves well.

 

I will get back soon. Thinking of and praying for you all!

[ashfern]

:grouphug:  :grouphug:

[G5052]

Personally, I think it's close enough.  TBH I think it's more difficult for you.  Parents we know will eventually pass on.  That's the way life "works" even if it sucks in the process.  My mom is 73 - older than many moms live (but MIL is 86, so I am a little jealous).  I want more good years as we love life together and I really don't want to see her suffer on her way out, but it's still "what happens sometimes."

 

 We know that about spouses too (50/50 chance pending who goes first), but it just seems like it shouldn't be happening now.  We're all too young!  Many  :grouphug: go out to you as you go through this journey that is not yours by choice.

 

Ditto that for others who are in similar boats.

 

Yes, it's a tough position as a spouse. We were once close, and now we're not. My therapist taught me to put up a wall so he couldn't hurt me and enrich my life apart from him. Her advice was to stay extremely busy and go do a chore or errand when he starts laying into me. When I do that and come back, he doesn't remember any of it. She also taught me how to defuse the unreasonable rages and not to try to reason with him.

 

He probably will go first with his dementia and cardiac issues. One of his doctors suspects mini-strokes, but he can't have an MRI, so we don't know 100%. Nothing on the CAT scan, but the symptoms are there. He's completely in denial about the dementia and says that the doctors who have brought that up are quacks. He has all kinds of plans for retirement that are unreasonable -- things like travelling on his own to visit his brother, taking a long driving trip with the family, losing 70 pounds, working out with weights at the gym, having another major surgery to correct his spinal issues, etc. etc.

 

He was extremely ugly today at the out-of-state pain clinic. Frankly I thought they were fine, but they started pushing his buttons (all on issues that I agree with BTW), and it went downhill. I'm guessing that they're going to drop him as a patient. The P.A. said she was going to discuss that action with the lead doctor and that we'd be getting a letter either way. He can't function without that clinic, and I'm guessing that no one else will touch his case because of the breadth of issues he has. That's why we ended up there six years ago. His local specialist said that it had gone behind his skills, and no other clinic that we visited then would take him.

 

Thankfully, using the techniques I learned from my therapist, I got him calmed down on the way home. It never spilled over onto me. I kept saying, "Ultimately you have to make your own medical decisions." If he feels he's in control, he calms down. Cognitively he's incapable of handling his medical issues of course.

 

Off to make dinner and then be "busy" all evening. I'm not sure how much he remembers of today, but I don't want to go over it again.

[dirty ethel rackham]

:grouphug: :grouphug:  to all of you dealing with this hard stuff!

[creekland]

Yes, it's a tough position as a spouse. We were once close, and now we're not. 

 

...

 

Off to make dinner and then be "busy" all evening. I'm not sure how much he remembers of today, but I don't want to go over it again.

 

I really, really wish there were a way to make this all better.  You have my utmost kudos along with the  :grouphug: .

 

Having seen Alzheimers with my MIL, it really is the worst IMO.  My mom and I discussed that a little bit today as she's adjusting to her new news.  Her body will probably ultimately fail her relatively soon, but her mind is still there.  With my MIL, she has 13 more years than my mom is at now, but she really "died" years ago.

 

I hope there are major advances in both cancer and Alzheimers treatments in the near future.  It'd be awesome if everyone could pass away naturally in their sleep after living a long and enjoyable life.

[Lilaclady]

(((((Hugs))))) to you ladies. You are awesome. Praying for strength and good health.

[Janeway]

Best wishes for everyone.

Edited December 23, 2016 by Janeway

[creekland]

Having just been with MIL and FIL... FIL is doing well - very mentally still there and just physically affected by his age (88).  MIL (Alzheimers) is worse.  When we went out to eat (very common) she didn't know where she was, what she was supposed to be doing, or even how to eat her food (asked me three times things like "how much do I put on the fork?").  That's mostly new since we saw her in Sept.  We offered to get Take Out instead of going out, but FIL is convinced that actually going out is good for her.  I'm not so sure I agree.