Aging Parent/Caregiver Thread - August

[vasc]

I am primary caregiver to my aunt, age 81, and blind.

I finally got her to commit to moving into assisted living, which is a massive undertaking. One year on the waiting list, committed to a room offered last month, big multi-state move where she’s selling her house of 50 (!!) years, moving away from the only town she’s ever known.

The one silver living of all this has been she gets to bring her beloved pet dog because the facility is pet-friendly.

Well, the dog went to the vet last Monday because people who visit my aunt told her she had a lump under her eye. Aunt, being blind, didn’t know it was there. Veterinarian diagnosed it a “tumor,” offered no imaging or further diagnostic tests (presumably because it’s expensive and the dog is already elderly), but prescribed a round of antibiotics. I don't get the impression that there is expectation that the dog will get better.

TW******image of dog with tumor




















I so badly want my aunt to come to the realization that maybe the dog should be humanely euthanized before moving next week. Aunt says she “won’t let dog suffer,” but also can’t physically see the tumor or observe the dog with her own eyes. As far as I know the dog is eating, drinking, and pottying normally, but people who have visited the home this past weekend relayed to me they think the dog is whining more than normal.

[jackie011]

We’re having a meeting with a hospice group to discuss my MIL’s care needs. She has lost 25 lbs since April and shows very little interest in eating. FIL is going to need so much support. This is awful.

[minzy]

Oh this is just a lot. For both of you, and all of us to come in the responses.

My sister and I are splitting full time nursing duties of our father (stage 4 pancreatic cancer/stroke) in his home where he lives with our stepmother. We seem to pick up some new added degree of difficulty every few days. On my watch last week, my stepmother had a stroke of her own (fortunately it was mild, which is why I caught it later in the day than maybe I should have), my father had tachycardia for four days, and the pipe below the kitchen sink began spontaneously flooding the kitchen floor at 4am. My dad had a big string of shitty days and we again broached the idea of hospice, or at least, not doing the chemo. However, he’s long believed that medicine alone will save the day, so I don’t know that we ever will be able to get him to agree to hospice. He needs every kind of help at this point and it falls to us. We are exploring nursing homes but think he’d hate them honestly. 24 patients to a nurse? Eek.

One of the hardest parts (and so much of this is hard) is the uncertainty of the when. It makes it extremely hard to plan. Neither of us live remotely close (so have had to basically move in) and that is tough. My sister is close to exhausting her FMLA and is on the verge of potentially losing her job over this if things go on much longer. I have continued to work throughout this but really only part time. My job is secure and my management team is incredibly understanding, but my deadlines are starting to stack up and I need to actually start getting shit done again. Another really big work thing landed on my plate last week which does not help. And then, it is a huge stress on our husbands and kids to do everything at home without us. I am pretty exhausted and feel like I am failing on multiple fronts.

There was a bright spot this week. My sister and I split a larger family vacation and it was so nice to get away. And then, the twins festival was this weekend. (My dad and uncle are twins, as are my sister and me.) I thought it was a tremendously long shot that we could go, but my dad made it to August, and said he was willing. My uncle came in. My sister worked her tail off getting my dad ready and stuffed into the car. I undertook extreme measures getting back from the larger family vacation to ensure I made it on time. But the four of us showed up to the festival together and I will treasure that memory for the rest of my life. ❤️

[jackie011]

This is really hard. We had the aforementioned meeting last Tuesday about changing my MIL’s care status to “hospice.” The nurse did a full assessment on Thursday and told the family that she was farther along than previously thought. We basically spent the whole weekend at her facility, including my 10 year old.

This week, we’ve cut back on his time there, and yesterday was the last time our family of three visited all together. DS goes back to school today and we really want him to be able to focus on school, his friends, etc. He said he was ok with yesterday being his last visit to see his grandma.

The nurse yesterday said she anticipates her passing within the next 24 hours. FIL decided to stay there overnight, because “she would stay with me.” DH has said he’s not sure he can go back and visit.

Meanwhile, I’m trying to keep everything going. I’m still working, and trying to do all the things, but I think I may reach the end of my ability to do that today. I’m praying for a peaceful passing.

[midwestmama]

I'm sorry for everyone going through very hard things.

MIL takes a driving simulation test next week. If she fails the simulation, then they will have her take an actual road test. If she fails both of those tests and her license gets taken away, then we will need to start looking into the Medicaid waiver process for an AL or memory care facility. (Starting the Medicaid waiver process is something I expect needs to happen anyways, but MIL not driving will speed up that process.)

[mommyatty]

My 81 year old MIL lives less than a mile from us. For about the last 10 years, she’s eaten dinner with us pretty much every night. We care for her, though she is generally independent and in good health. She goes to the gym (that I pay for) a few times a week. But last week, she got a sinus infection and went to the doc in the box. Every time, they give her amoxicillin. Every time, the amoxicillin makes her puke. If we know she’s going to the doctor, I remind her to ask for a Z pac because those don’t upset her stomach. But last week, I didn’t know. So she took the amoxicillin and spent all day puking. At 12:45, after midnight, she texted she was thinking of calling an ambulance. So I got out of bed and went to help. She was so weak from puking all day that she couldn’t get to the car, so indeed we called an ambulance, and I sat with her in the ER all night. That was Friday night into Saturday morning.

You guys, Sunday morning, she got up and TOOK THE FUCKING AMOXICILLIN AGAIN. She thought it was a new medicine from the hospital. Nope, no it wasn’t. I had to send DH to her house to figure out WTF she took because she couldn’t tell us other than “it’s not the one for vomiting and it’s not the one in the box”. I was texting “They only sent in two prescriptions for you. The stuff for puking and the steroid, which is probably in a box.” So that evening, she had to go back to an ER. I made DH take her. Honestly, she’s getting to the point where she can’t live alone much longer. She’s just too dotty, as my grandma used to say. But neither she nor DH can admit that. I’m hoping my job moves me to another state for a number of reasons, but one is so we can sell both of our houses and have her move in with us.

[litskispeciality]

Holy cow y'all I'm so sorry for everything you're going through. I'm not big in to religion but I find comfort in prayer right now, and I'll be praying for the GBCN families.

My dad's been in Memory Care for 1 month this week. Everyone at the place is incredibly nice and seems happy to work there (which is awesome), but it's been a really hard mind-eff. My dad is physically moving a bit better which is great, however my first visit after drop-off was really hard. Sad to see what other's have been seeing about my dad's decline. He's kind of rude making comments out in the open about other residents. I thought everyone was supposed to avoid telling my dad he's in assisted living (interchangable term for 'I'm in a facility'), however he started making comments "I don't know how long I'll be in AL/MC". I was able to have lunch there on my last visit, but he's not given a knife, and I think that's been hard for him to realize he's there.

The place says they have a lot of activities 7 days a week, and my dad will get PT 3 days per week/OT the other 2 (weekdays), however my dad says the place is "boring". He doesn't have a TV or computer in his room, and I think he's mad about that. They canceled afternoon activities the day I visited too and I was kind of annoyed as I was so tired it was almost unsafe to drive home, but felt I should say and keep him busy. We made the most of it with our own trivia and a brief walk. I think I'm going to change my visit schedule to the afternoons if I can, we'll see.

I know it was the exact right thing to do, but it's still really hard. Also trying to get a grasp on his finances as I'm financial and medical POA, but I can't even handle my own stuff.

I had an apt with someone from my local council on aging to see if they can give me any caregiver support (I understand I have a different role as he doesn't live with me), but between him being in a different state and some other things I was basically just told about the Alz support group once a month I already knew about. I still need to look in to online groups, but I like in-person if I can make it work. I asked about counseling for myself with someone better trained in MC and end of life, and/or financial help/taking over his finances, but didn't get anywhere.

On top of that I posed in the support thread that both of my IL's are in worse health than I knew. They're sick enough to have a visiting nurse, but we're not sure why. I'm happy for the extra coverage as I can't help right now, but worried what got insurance to approve that? MIL has had a lot of unexplained health issues for years, and now her husband (my FIL) is very worried it's pancreatic cancer as that runs in the family. MIL's getting pancreas and throat checked out, but it's still really scary.

Sorry for the long vent. Again huge hugs everyone. As I say every time, this sh!t is HARD.

[litskispeciality]

Oh ((( jackie011,))) prayers for a peaceful passing. I hope you can get some kind of family caregiver break as well because that's a LOT.

((( vasc,))) ((( minzy,))) (((mommyatty,))) my heart hurts for all of you. I say it all the time, but our system (in America anyway) isn't equipped for us younger folks to work full time to support our families and also take care of aging parents and family.

PDQ PDQ:

I think my DH is getting really burnt out on helping my family. We had a huge fight about something he did (not family related on either side) and he made a comment that didn't sit well with me. I know he's taking on a lot more than he probably should, but I work full time and don't have anyone else. I'm sad to see stories on here of other burnt out spouses, but I appreciate everyone's honesty, makes it seem like we just have to help each others families if our spouses want us to work and run everything at home.

[aprilsails]

Big hugs to everyone. This shit is hard.

I've got a mixed bag of an update. FIL's doctor has reworked his medication based on his new dementia diagnosis and there's been some big improvements in his stability and mobility. Which is great. His attitude and awareness are also better through the morning, but then he Sundowns hard around 3pm.

In the meantime, MIL found out she was on a Crohn's medication that she should not have been. Her GP had been managing her while waiting for a new gastroenterologist. Now she's gotten in to see the specialist and they've tried a medication she had a very scary reaction to. The next option is bi-weekly chemo which is making her very sick for 3-4 days after each treatment. She is not really telling us much information, and refusing help.

To be honest my entire family has been sick for the past month so she mostly wants us to stay away. She told me last time she was sick FIL made dinner. He baked potatoes for 4 hours and cooked brussel sprouts for 2 hours. He really can't help her in any meaningful way. Ugh.

[vasc]

My aunt moved into her AL residence Thursday. I spent the night with her to Friday, when the moving truck came. Unpacked and set it all up for her so it is quite home-y.

Today she is super homesick. TV channels aren’t the same so she can’t navigate the TV independently. Lawrence Well not on at 7:00 like it was at home. Small things like that where she really just needs to push her alert button and someone will help. Self-advocacy is not a strength.

The dog is doing fine. Aunt is projecting all her feelings on the dog. “I’m so sorry I had to do this to you….”

[minzy]

My week at home is over and it’s time to relieve my sister. I stuffed a lot in, time with my girls and husband, workouts, a full week of work without taking any leave(!), volunteering several hours, catching up with some friends. I slept like shit last night, cried at one point, had a dream of my father’s death (a fall), and am exhausted. But I know I need to get going ASAP so the gap between my sister’s flight out and my arrival isn’t big enough for my dad and stepmother to make any stupid moves where he gets hurt.

I’ll be walking back in to a stepmother who is a PITA to live with normally but apparently this week has shared that she is resentful of our (necessary) help, she thinks I load her dishwasher wrong, and she doesn’t like that I have worked in the living room when she wants to be in there. 🙄 Pardon me for cutting your grass, doing laundry, shopping, cleaning, cooking, caring for your husband medically, legally, logistically, usually with a smile on my face, and trying to be as god damn efficient as I can so I can still marginally uphold the other aspects of my life at home. So, fun.

He had a good week last week since he was so far from the last chemo but had it on Friday so will probably be feeling like ass when I get there later today.

[cricketwife]

Jackie, I’m so sorry.

My mother has Alzheimer’s and lives in a care home so I’m not her “caretaker” but I am her POA. She has not known that I am her daughter for over 2 years, but she recognized me as “her person” and always smiled to see me and was happy to go with me. I used to take her all day on Saturdays and any other time I could. She would be with our family and just do whatever we were doing. We had a degree of “fun”. In the last year that has gotten less and less. There is no joy left. She doesn’t know my kids. She used to associate them with me and would ask about them. She doesn’t recognize them or interact with them now. The last few visits she didn’t seem to recognize me and didn’t want to come/leave with me. So I feel like we are spiraling. It’s so hard to take her anywhere. It’s hard to “visit” with her. I find myself going less frequently and spending less time, which probably contributes to her not knowing me.

In a couple of weeks, my kids’ soccer will start again and I’ll see if she can still come with us. That used to be an ideal activity because she was outside in fresh air, there was lots of activity around to (hopefully) stimulate her, she doesn’t have to talk, etc. But I don’t know. I don’t bring her to my house anymore becuase she will not just sit in one place, even with me right next to her. I have a lot of guilt.i don’t want to abandon her and not visit her, but it’s an exercise in grief and frustration every time. There is literally no joy left in the relationships. There used to be glimmers amidst all the heartache.

I know that having less than 6 words is a criteria for hospice so I count when we are together and it’s so sad I becuase she often doesn’t have six words or if she does it’s because she is using a “language clump” something her brain would not be able to break down into smaller words like “I don’t know.” “It’s awful.” 😢. I don’t think she’s anywhere near eligible for hospice, I just find it interesting (sad, really) that her langauage has already deteriorated to that level.

Physically she remains in great shape. 😩 💔

[jackie011]

My MIL passed on Friday morning, with my FIL by her side. He had spent the previous two nights there with her “because she would have stayed with me.” This process is so interesting, as she had minimal health issues, other than the Alzheimer’s. We spoke very frankly with the hospice nurses who talked through the various signs they look for and how they know the end is near. It’s really kind of fascinating, if you’re able to take the emotion out.

There is comfort in knowing she is at peace.

[litskispeciality]

Oh jackie011, I'm so sorry for your loss. Sending you all prayers for comfort and peace.

[definitelyO]

jackie011, I am so sorry for your loss and happy that your FIL was able to be there with her.

[cricketwife]

jackie011, I’m very sorry for your loss. I’m glad she is at peace. If ever you feel willing/able/ready to share more, I would be interested to know more about how the end was and what she was like in the months leading up to that. Again, I’m sorry for your loss and of course there is no pressure or obligation to share.

[jackie011]

Aug 21, 2024 7:11:45 GMT -5 cricketwife said:

jackie011, I’m very sorry for your loss. I’m glad she is at peace. If ever you feel willing/able/ready to share more, I would be interested to know more about how the end was and what she was like in the months leading up to that. Again, I’m sorry for your loss and of course there is no pressure or obligation to share.

Yes, I was actually wondering if that may be helpful to others. We have a lot going on the next few days, and I’d want to really sit and think it out. I’ll post something this weekend.

[stemmie]

jackie011, I am sorry for your loss.

cricketwife, I'm sorry for where you are in your mom's dementia journey. My dad late dad had dementia and one of the toughest parts was coming to grips with the reality that safe and cared-for was about as good it could get at some point. His capacity for joy was replaced by apathy fairly early on-- it was so uncharacteristic of him.

Dad's late stage was a bit different than you describe in some ways. He was in his 80s and often had later stage physical symptoms (incontinence, weight loss, rocky gait) while still recognizing mom and me and also being quite verbal. As a result, we (mom, me and his MCF) missed the opportunity to engage hospice services which I deeply regret. My mom has a lot of misconceptions about hospice, so I didn't force the issue. Mom could have used their support in those last months and after he passed.

People from my local ALZ support group are all on the same page about bringing in hospice as early as possible. Many care facilities welcome hospice as it provides extra support. Some provide hospital beds, special wheelchairs and even incontinence supplies as part of their contract. You might want to interview a couple agencies. The care home may have preferred providers based on experience, but you don't need a referral from them or a doctor to ask for an evaluation. Even if she doesn't qualify now, they could share signs that it's time.

[theoriginalbean]

I spent last week in NJ (I live in WA) visiting family and sitting down with my siblings and our mom to start making sure we have all our ducks in a row (mom was recently diagnosed with lewy body disease). She shared that her husband wasn't really seeing the urgency in getting in with an elder care attorney and having paperwork in place, sharing things like their LTC plan with us, etc. She had driven herself out from OH and had an appointment scheduled to re-test her driving skills when she got back, but ended up having a few episodes of vision loss in the last days of our trip. Our brother ended up having to drive her and her car from NJ to OH (he lives in AL, so then had to drive himself and his kids back there) and was able to talk to her husband and he's starting to understand why it's important to get everything together now, since the progression is unknown. I think the vision loss really scared him because now he's talking about officially retiring and maybe moving both of them back to NJ (where my sister lives).

I don't know why I just said all of that, but the guilt of being the sibling furthest away (both geographically and emotionally, honestly) is already growing. My brother lives with our dad in AL right now and my sister is going to end up taking the brunt of things with our mom. How can I support her as we go?

[cricketwife]

theoriginalbean, I can type more when I’m at a desktop, but the best advice I can give you is do not judge the sibling who is bearing the brunt of it, spending the time, investing the emotional energy and likely shedding more tears than you will ever know. They have the full pictures and probably 1000 details that you don’t know and that they don’t have the time or energy to explain to you. Keep your opinions, judgements, and thoughts to yourself. That will be the best way to support. There will be many practical ways as well.

[spindle92]

Aug 21, 2024 12:17:31 GMT -5 cricketwife said:

theoriginalbean , I can type more when I’m at a desktop, but the best advice I can give you is do not judge the sibling who is bearing the brunt of it, spending the time, investing the emotional energy and likely shedding more tears than you will ever know. They have the full pictures and probably 1000 details that you don’t know and that they don’t have the time or energy to explain to you. Keep your opinions, judgements, and thoughts to yourself. That will be the best way to support. There will be many practical ways as well.

I 10000000% agree.

My mom has been in the hospital for 15 days now and I've been here every day while my oldest sister came by for 30 minutes one day last week and within the first 5 minutes started telling me everyhting I am doing wrong. 
She has then proceeded to complain non stop about me to my younger sister, while she (the oldest) sits back and offers no support.

[litskispeciality]

theoriginalbean, I won't quote you. My brother lives relatively close, about an hour or so from me, about an hour or so from my dad, but is still undergoing major health issues and won't be able to physically help with my dad until at least Jan/Feb of next year. Even that will be limited when he hopefully returns to work and has no PTO. What's really helped me (within the limits of his physical abilities right now) are things that can be done from afar and take it off my plate. Perhaps you can research lawyers and set up apts. My brother found agencies like Visiting Angels, and the first place we moved my dad (independent living). He arranged a moving truck. Basically if you can do it from afar offer to do it, but give some grace if your siblings want/need control.

PTO is such a tricky thing, but if you somehow can go out to visit and help with rides, or even just a day or two where you're visiting and helping/give your sibling a break, that will do your local siblings a lot of good. If not see if you can help arrange ride shares (if your parents can even take those, my dad became a risk on his own).

Easier said than done, but my brother and I also tried our best to schedule vacations opposite of each other so someone was always available to cover if something came up. Not sure what I'll do this year, but hoping Memory Care can handle it for a few days.

Huge hugs.

[madDawg228]

I've been reading this monthly thread for awhile, and would like to join as a soon-to-be guardian for my 35yo brother, and I will be making similar POA/medical decisions for him as other posters make for their relatives in this thread.

I contemplated joining the SN monthly thread, but that's about people's children, and my parents really messed up by not setting things up for my brother before they passed. I think my brother's situation would be too depressing for them, hell... it's depressing to me. He's an autistic person, and is mostly nonverbal with several medical issues.

Both my parents have passed and left a literal & figurative mess behind. I may be able to offer advice to anyone who is next of kin of someone who leaves similar messes behind.

I have a 4yo, and have been having a hard time juggling a young kid and my brother. My husband is very helpful, but everything is still a lot for both of us.

My ILs are okay for now but live on the other side of the country, and I suspect there might be issues in the next several years.

[livinitup]

We passed the 1 year anniversary of my FIL passing in May. He was actually in good health for the 25 years he waited for his cancer to return, but it always loomed large in his future plans - a ‘when’ not ‘if’ the cancer returned. Still, he resisted hospice care in the end and it made it harder on his wife and sons. I guess it makes sense if you think of his continuing his fierce ‘fight’ against death and absolute belief in the medical community that he would rally back to good health. He was rotating in/out of the ER and in-patient for 6 months always looking for a medical solution even as the it became impossible. I asked about hospice with more and more urgency and they finally managed an in-home in-take 3 weeks before his passing but still acted like it was not necessary. It was. Even my H was saying they ‘didn't want a stranger’ in the home which was NOT the actual issue. I mean, sure. But they embraced the nurses and rotating hospital staff who were strangers. They just didn’t want to admit it was time. Even when they were rotating awake hours to tend to his basic care needs, and ER visits for pain management.

His final hospital discharge was to a hospice home which was a wonderful option but brought great deal of guilt that he wasn’t “going home”. So, my MIL had regret that they didn’t have established in-home hospice care. I wished my FIL could have given his permission when he was still able to communicate. That would have helped them all. I cannot exaggerate how wonderful the hospice home was for his care and pain management. Night and day.

[momof2]

Aug 21, 2024 14:33:23 GMT -5 madDawg228 said:

I've been reading this monthly thread for awhile, and would like to join as a soon-to-be guardian for my 35yo brother, and I will be making similar POA/medical decisions for him as other posters make for their relatives in this thread.

I contemplated joining the SN monthly thread, but that's about people's children, and my parents really messed up by not setting things up for my brother before they passed. I think my brother's situation would be too depressing for them, hell... it's depressing to me. He's an autistic person, and is mostly nonverbal with several medical issues.

Both my parents have passed and left a literal & figurative mess behind. I may be able to offer advice to anyone who is next of kin of someone who leaves similar messes behind.

I have a 4yo, and have been having a hard time juggling a young kid and my brother. My husband is very helpful, but everything is still a lot for both of us.

My ILs are okay for now but live on the other side of the country, and I suspect there might be issues in the next several years.

I won’t join the SN check in either even though it is my kid because my 15 year old’s situation is way more extreme than what most are dealing with there. That said, if you haven’t figured out all the resources at your disposal, an advocate at the autism society or ARC could potentially be very helpful. Hopefully, he is already on Medicaid. And I’m so sorry your parents left this mess. I’m going to do everything in my power to leave the least mess possible for my other kid. I also want to say, it is ok to focus on your 4 year old— it really is.

ETA — extreme may be the wrong word. I don’t want to underestimate what others are going through!!! My situation just always feels very different than what I see posted there.

[lilypad1126]

theoriginalbean , in the year before my FIL passed, my H and I were not local. H’s brother was handling FILs care and H did not agree with some things. In a moment of frustration, I told H “you can either be your brother’s biggest cheerleader or you can take on FIL’s care. But you cant be the person who swoops in for 30 minutes and gives brother shit for not doing it how you would, bc you aren’t there full time and don’t have all the details.”

All that to say, 10 years after FIL’s death, H’s brother still says how much he appreciated H’s unwavering support. Obviously this doesn’t apply if the caretaker is doing some that puts your mom at risk, but on day to day stuff, decisions that really won’t make a big difference, decisions that have to be made on the fly with the knowledge on hand, supporting your siblings and the decisions they needed to make goes a long way.

also, I’m sorry you and your family are in this situation 🙁

[theoriginalbean]

Aug 21, 2024 12:17:31 GMT -5 cricketwife said:

theoriginalbean , I can type more when I’m at a desktop, but the best advice I can give you is do not judge the sibling who is bearing the brunt of it, spending the time, investing the emotional energy and likely shedding more tears than you will ever know. They have the full pictures and probably 1000 details that you don’t know and that they don’t have the time or energy to explain to you. Keep your opinions, judgements, and thoughts to yourself. That will be the best way to support. There will be many practical ways as well.

Thank you for this, and to the others who replied, as well. I'm honestly not the best person to be driving this bus, anyway - my mom and I have a very strained relationship after a lot of turmoil in our home growing up. She's much closer to my sister and I'm happy to support them both however I can without judgement or disagreement. I 100% believe that my sister will make the best decisions for her. I don't want it to sound like I'm washing my hands of it, completely, just that she knows her better and is much more emotionally connected.

Thank you all for letting me post here and for the feedback. I greatly appreciate it.

[vmars]

This past month has been the hardest one in my life thus far. My 76 year old dad went boogie boarding and got thrown and broke his neck. He’s now paralyzed from the chest down. We thought things would go well in rehab and while the actual rehab is going well, their nursing care is bad. My dad was almost dropped yesterday, he’s been ignored for hours on end which has resulted in pain and suffering. I am beyond words and he’s supposedly at one of the best rehabs in the country. He only has 2 weeks left and then will be home. Thankfully my mom decided to hire a live in care giver. It’s all out of pocket, but i will feel better knowing my mom has help.

[madDawg228]

Aug 21, 2024 16:23:41 GMT -5 momof2 said:

Aug 21, 2024 14:33:23 GMT -5 madDawg228 said:

I've been reading this monthly thread for awhile, and would like to join as a soon-to-be guardian for my 35yo brother, and I will be making similar POA/medical decisions for him as other posters make for their relatives in this thread.

I contemplated joining the SN monthly thread, but that's about people's children, and my parents really messed up by not setting things up for my brother before they passed. I think my brother's situation would be too depressing for them, hell... it's depressing to me. He's an autistic person, and is mostly nonverbal with several medical issues.

Both my parents have passed and left a literal & figurative mess behind. I may be able to offer advice to anyone who is next of kin of someone who leaves similar messes behind.

I have a 4yo, and have been having a hard time juggling a young kid and my brother. My husband is very helpful, but everything is still a lot for both of us.

My ILs are okay for now but live on the other side of the country, and I suspect there might be issues in the next several years.

I won’t join the SN check in either even though it is my kid because my 15 year old’s situation is way more extreme than what most are dealing with there. That said, if you haven’t figured out all the resources at your disposal, an advocate at the autism society or ARC could potentially be very helpful. Hopefully, he is already on Medicaid. And I’m so sorry your parents left this mess. I’m going to do everything in my power to leave the least mess possible for my other kid. I also want to say, it is ok to focus on your 4 year old— it really is.

ETA — extreme may be the wrong word. I don’t want to underestimate what others are going through!!! My situation just always feels very different than what I see posted there.

Thank you for your reply. My brother is set up with SS and Medicaid. His case manager has been communicative with me and has been helping me in this process, and they are a good advocate for him.

I do focus on my 4yo (and am so thankful for the time I spend with my DS!), but I feel for my brother and wish I had more time & disposal income to make things a little easier for him. The next year will have a lot of transitions for him, and I know that will be difficult for him.

[minzy]

Here I am again, sorry that it’s only been a few days. We met with palliative care in person today for med management. My dad’s pain was 0/10 at the appointment and we’re keeping pain meds the same. Most interestingly is that his pancreatic cancer number (CA-19-9) is down significantly, below even where we “started” in April, due of course to the chemo. His liver function by three tests has vastly improved. A CT scan is scheduled in a couple of weeks to check on the size of the lesions/spread (likely decreased given the bloodwork and that pain is well controlled). So now I’m wondering if we have not just totally wound back the clock (and I look like I’ve cried wolf to everyone about how dire this is). I know that a catastrophe could take him out, a fall, another stroke, heart attack, COVID, who knows, gout, but I am feeling right now that he may outlive the lot of us! Of course he won’t. 😔

He requires 100% help with ADLs but will be discharged from PT and OT (from the stroke) soon. He says he wants to drive, to “help out,” and he was serious. I shut him down there - dude, I watched you unable to move your right foot for 30 seconds this very morning! Wanted to know if I would abide by results of state testing. I told him I would not endorse the idea and in fact would really advise against it given the lawsuit potential. Serious WTF. I told him if he is that interested to research what he needs to do, I’m not spending the time that way. He has also switched himself back from DNR to full code, which basically means that when he dies I have to call paramedics to crack his ribs in the living room and if they get him going even marginally I will have to be the one to call it later on. Ugh, come on dad! You have stage 4 cancer! He is so far from thinking about hospice (despite my talking about it as an option all the time) that I don’t think he will ever agree to avail himself to it.

On the plus side we have started home health aides this week, and given this latest development may really need to ramp them as my sister and I simply cannot provide 24/7 coverage indefinitely. I have gotten him out on little adventures each day this week. An upcoming family wedding is looking like a possibility. And my sister started her first ever anti-anxiety med brought on by the stress of dealing with all of this.