Definitely find a place to vent and don’t be surprised at the depths of your feelings. Close to a year after my mother died, I got an email from the accountant that I had to print a 60 page final return, I could not e-file. My DH can attest that I burst into tears of frustration and used bad language. After years of handling the physical and financial needs, printing all that was apparently the final straw. 
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@somemom and all those dealing with emotion after emotion – this reminds me of a friend who had strung out finishing her PhD, and on the final submission page - they were very detailed on how the page was to be set up – I think she had to go to a professional typesetter or something to that effect, and several rounds of this. She was so frustrated not only by the requirement and the typesetter, but more money going out the door – that she wanted to chuck it all despite all the sacrifices she made. I guess it is like the gas tank is at .02 empty and it goes down to .01 and you wonder if you have enough in your tank.
Hello everyone, I’ve been lurking on this thread for a week or two, but thought I’d now jump in. I’ve become a parent caring for my parents (from 400 miles away) under sudden and dramatic circumstances as of about 6-8 weeks ago.
Mom (82, lifelong smoker, afib, CKD, pacemaker) was diagnosed with early stage dementia a year or so ago. Up until recently, you’d barely have known there was an issue. She had some minor speech issues, that was it. In December and early January, she was in the ER a few times for some headaches that they couldn’t seem to properly diagnose, as well as a UTI. By mid-January, my dad (85) called to say mom was having incoherent moments. At points she believed deceased relatives were in the house; at other points I’d talk to her she’d seem fairly ok. We thought it might be one of the medicines the ER doctor put her on for headaches, so called PCP and we took her off of it; however, the confusion was getting worse. In late Jan they met with neuro. He ordered some testing and a followup in a month.
The next day, she thought my dad was a strange man in the house trying to hurt her, locked herself in bedroom, and then called me expressing suicidal thoughts. Dad called 911, got her to ER, where she was diagnosed with another raging UTI, asymptomatic COVID, and put in a specialty COVID psychiatric ward for stabilization. We all assumed that once the UTI resolved, she’d be her old self. She isn’t.
She stayed for three weeks - her confusion got even more profound as they struggled to find the right combo of meds to get her sleeping. She got a third UTI. She became aggressive and agitated at points. None of our family could understand this sudden and steep decline in her condition. It was only then that I was told that she had vascular, not traditional dementia, and told we’d continue to see stepwise declines in her cognition every time she gets another UTI or has another “insult” to the brain. She’s lost almost thirty pounds in 60-90 days. We were told to seek memory care. We placed in her what we believe is an awesome facility a week ago.
Meantime, my dad has to sell their house to pay for her care and move elsewhere. I spent the last week doing that and getting him settled in an independent living facility, and the house will go on market soon.
The last 45 days have been surreal; I’m still wondering how her condition could have been so normal just a short time ago. I’m worried about my dad and how he’ll handle all of this. I have two siblings; both cannot currently travel to help me. I created a google doc that is now 50+ pages long where I update them on everything I am doing, every phone conversation I have with doctors, etc. because I want to be transparent. One sib is extremely supportive; the other is questioning every decision I make, micromanaging me, insisting we take my mom to experts off-property to seek second and third opinions. I guess they think she’s going to still make a miraculous recovery or that there must be something else wrong. She’s also due to have her pacemaker assessed for replacement. If it does, the facility says this would be extremely hard on my mom and they seemed to recommend against it (which I agree with, but don’t expect my sibling will).
Maybe she will make a miraculous recovery; I just don’t see it. The memory care facility tells me they are moving her to a higher level of care for lower-functioning patients as she’s taking her clothes off and walking around with no clothes (normal mom was a downright prude). I haven’t even shared this with my dad yet; it will break his heart.
I’m trying to balance everyone’s demands, weigh the cost/benefit of all of these extra specialist visits on my mom (she’d have to quarantine for 48 hours every time she went off property), think of my dad’s health, manage his finances, and also work my full-time job and raise my two teens. DH is a great support.
I don’t even know what I’m looking for in posting all of this - suggestions on how to handle siblings? support group resources? should I insist on these specialist appointments? Am I being too closed-minded in wanting to push back on my sibling’s demands? What should I be doing that I’m not?
If you got this far, I appreciate you reading. 
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I am so sorry you are dealing with such a sudden decline in your mom’s condition. Heart breaking.
My advice is to take care of yourself first and foremost or you will be no good to anyone else.
As far as the sibling questioning every decision - did your mom have a living will or POA for health care? If so, rely on that for your guidance and your mantra should be “I’m doing what mom would have wanted.” If there is no such document, I’d change tactics to “I’m following the advice of the doctors and facility.” I can empathize which what a terrible position that puts you in (I was the decision maker for my mom too),
I think looking for a support group or a therapist is a great idea. It was sanity saving for me.
It sounds to me like you are doing everything you can to make sure your mom is safe and cared for.
Big cyber hugs your way!
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@Seabass927 I can identify with most of what you wrote. I wonder if she is also having mini-strokes? UTIs can really make seniors act bizarrely so it’s good they are following up on that.
I would take advantage of the memory care place’s expertise and ask a lot of questions. Everything you are describing to me, while awful to think about, sounds very typical for dementia patients.
If she stays this agitated, I would consider getting a psychiatric consult. Over the summer my mom had to be hospitalized for her behavior and we finally found a psychiatric medicine that helped. It is not a sedative (although she had Xanax PRN); I was in favor of trying this because I thought it was cruel to let her stay in a frightened and agitated state. In fact, I would have not minded a little bit of sedation if it kept her more calm. I realize not everyone feels the same, but I was trying to put myself inside her head and I would not want to be living 24/7 thinking my husband was a stranger or wondering why everyone was wearing masks around me.
Please continue to ask questions here!
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Thanks! I appreciate your thoughts. She does have advanced directives, living will and POA. The docs don’t quite cover specific scenarios we’re facing (lesson learned for myself) - but I like your suggestion of relying on what we believe to be her wishes and/or what facility recommends. Sibling’s wife has a parent with traditional dementia and they both believe all doctors are money-grubbing, so they are coming at this with a “we know everything and you should question everything” mentality. Her parent’s situation is vastly different from my mom’s. I’'m not trying to put my mom in an early grave, but when you have an elderly lady with poor quality of life and multiple underlying conditions that can’t be reversed, and her overwhelmed, tired spouse, I question at what cost we would be doing some of these things. Any suggestions on where to find good support groups? Online would be best for me.
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@sosconcern, I believe that when you are in the trenches, it’s all you can do to just deal with what is happening each day. I clearly recognize that I had neither the time, nor the emotional freedom, to feel all the feelings I was having. I knew at the time that those would have to wait for later. I consider myself quite capable and emotionally stable, I recognized feelings would happen later. I have been surprised how long I continue to feel the feelings. I am vocalizing a lot of, well I could, classily say “anger and frustrations” with family who could have helped, yet chose not to help as much as they should have, but really, the real term is “pissed off” 
Can I say that here? I am not at all playing a victim and actually trying to understand my personality such that I am a great problem solver and I see the fix and make it happen, but do I not give others their opportunity to step up? Or have I trained everyone in my life to see me as the fixer (not Ray Donovan style) and I taught them to be lazy? One of the irritating things to me is the people who did so little and yet think they did so much, or the ones who justify that they did not have much relationship with X parent so should not be expected to do much (not talking abuse of hostility, just a parent who never made much effort and a kid the same. Kid not realizing that the siblings with the relationships, the kids are the ones who made it happen, not the parents.)
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Thank you so much. And my sympathies on your recent losses, I was following a long just a bit.
Yes, the hospital doctor believes she may have had some mini-strokes (we think that may explain her headaches). Her agitation has been brought under control with a variety of meds (she had a psych seeing her every day in hospital), but my sibling and his wife think that now the meds are causing her increased confusion. Like you, I felt she was in distress without them - she wasn’t sleeping either - and that the benefits outweighed the risks. The care facility has said the goal is to get her to a therapeutic level on the medication, and I am comfortable with that.
We are arranging for a virtual dementia specialist consult with a physician who is a neurologist and psychiatrist, but sibling wants me to arrange to take her to this other institute 40 miles away to get a second opinion. Care facility only transports within ten miles, I’m not comfortable driving her in her current state even if I could quarantine prior (would she open door and try to jump out?), she’d have no idea what was happening or where she was going, and then she’d have to self-isolate. It seems like it’s putting her through a lot when we can see this other specialist virtually and more quickly. Thanks for your response. I’m glad to know that I’m not alone in this.
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@Seabass927 perhaps see online support and 24/7 phone line by Alzheimers Association.
Sounds like your sibling means well but doesn’t appreciate practical issues you face. They may be trying to have your mother benefit from lessons learned with the mother-in-law.
https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/vascular-dementia
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The ALZ society has a whole bunch of online resources and supports. There are different groups too based on the type of dementia. I found it both helpful and overwhelming.
Your local ALZ society or department of aging should have local resources for your too.
I think you are wise to be considering your mom’s quality of life.
I appreciate everyone sharing their experiences. I’m also in the trenches, and it is kind of so overwhelming I don’t know where to start. But I can TOTALLY empathize with those dealing with siblings not pulling their weight and being jerks. I guess it is comforting to know I’m not the only one!
Anyway, reading everyone’s posts has been tremendously helpful to me so thank you.
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@Seabass927 First, you are doing a great job with all you are juggling. You are a very caring person.
Second, can you protect yourself by relaying info to the supportive sibling and have that sibling deal with the one that is trying to micromanage? You do not have to deal with more than the on-going situation. If the other sibling agrees with your dad and you, they can relay that “dad and the two of us” agree on this being the best action. Let that sibling deal with the other as much as possible.
Your mom will have the most mental stability by staying put. If dad and your other sibling agree, have the questioning sibling dealt with as much as possible by the supportive sibling. Listen to what the care facility is telling you, and ask the questions that you need to ask. They may have had similar patient experience, or can at least guide you every step of the way. No crystal ball on this.
Vascular dementia and her other co-morbidities. It seems the UTIs (and perhaps her body generally declining) - there are terms for some of the brain repercussions – Medical Encephalopathy, Encephalopathy. It sounds like her profound decline is that several particular brain areas are affected by the vascular dementia and other medical things going on like CKD (which can throw off her blood work substantially and cause some of the encephalopathy). Your mom may have been able to mask some of the dementia in her recent history until no longer, and then ‘all he-- broke loose’.
Sorry you had delay in receiving that critical piece of info about her dementia being vascular.
Pacemaker IMHO should not be replaced for the reasons stated. The current pacemaker will probably last for a while longer, and maybe if the situation dramatically improves maybe then consider.
What is unstated is her mind is going, and do you want the rest of her body to be continuing on with the medical situations she has going on? Some of her organs may be declining or shutting down as well.
Has your dad medical power of attorney and has he completed a DNR with your mom’s MD? I would suspect this has been done with the type of facility your mom is now in.
My mom had dementia and was borderline for a pacemaker and before the dementia went too bad, she agreed to not get a pacemaker and signed the DNR if her heart stopped. She didn’t want her body to go on when her brain was not. When she had some physical decline well into dementia, she was evaluated for Hospice on a Monday (in their county it is via hospital ER so they can get the 3 MDs required in her state), and was hospitalized for 3/4 days with IV antibiotics as they suspected gall bladder infection (mom was 77); she went home with Hospice on a Thursday, had shallow breathing on Friday, and died on Monday. My mom was calm and not erratic with her dementia - and her strongest wish was to stay in her home and go out ‘feet first’ i.e. natural death in her home – which she did with live in help, a little very happy friendly dog, and brother one door away. Sister and brother were on bedside watch, and mom chose to die when they both stepped into the kitchen area for lunch (mom’s hospital bed was in the living room, which is open from living room through dining to kitchen).
Your mom is in a safe place. Your dad is in a community so he is not alone. It is tough on everyone. You go day by day, week by week.
Just before my mom started having neurological problems (falls) and declining mental functioning, she was on a trip with a group that I had arranged (she had done several other trips with groups of people that are friends or with people I know); in Italy she fell several times and came back with substantial black bruises on her forearms. The return for the trip was to my home city (in another state) and then her flight back was a direct flight with my younger brother picking her up. I called all my siblings to tell them about mom’s falls and the bruises (along with my RN thoughts), and that she will need a neurological check when she returns home; my older brother yelled at me on the phone like I was supposed to know ahead of time or prevent it - and yet all were supportive of mom having fun with travel with groups I/she knew. One of her Italy falls was on a cobble stone area, and as she fell she hit her diamond ring and the diamond fell out - several fellows in the group spent time and yes it was found (it was glistening on the wet cobble stone). That is how caring the group was with her. Mom was a charming person and fun.
Hang in, and vent with this group when needed. We are living with declining parents or another loved one’s medical decline. We have MIL as remaining parent - she will turn 92 in March and just moved to skilled care. FIL died in Dec at 92, of COVID and decided himself for Comfort Care only - so w/o IV or other meds his decline into unresponsive to comatose to death. MIL was supposed to join FIL at Skilled Care, and then COVID hit, and her transfer was delayed. She now is in FIL’s prior room; staff are familiar with her and she is in the right place for 24/7 care. MIL is the youngest girl in her family and all her sisters (and she) have had heart issues. One sis had a massive heart attack and died at age 78, another had a series of heart attacks and died at 89, then the other sisters lived to 92, 93, 94, 95 and 96 with cardiac primary cause or close 2nd to dementia. Her younger brother (a year younger) and she are the last of 13 kids. My parents died at 64 and 77. H and I are both 64. It is what it is.
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See if you can find a Facebook group about vascular dementia, I joined a group about my Mom’s dementia, it was incredibly helpful as hers was characterized by dramatic shifts in ability.
I can tell you that my opinion, for my mother (having discussed this over the years) and for myself is that absolutely no life prolonging treatments once the mind is gone. No way. A friend of mine had to fight to have her Dad’s pacemaker disabled as he failed from Alzheimers and approached 100, I would not likely be replacing the pacemaker. Obviously I do not know all her details and blanket statements are not realistic, but mainly our determination was, once the mind is gone, don’t prolong the natural body failing. Of course, anything to remain comfortable was great, and even treatment for HBP to avoid a stroke, etc. was fine, but not intervention measures of the more dramatic type. A frail old person is not well-served by time in the hospital.
It is not unrealistic to not know if a downturn is temporary or permanent, UTIs especially can cause dramatic changes, but it is also not unrealistic for people not to want to believe a person is legit dying/failing. That is their personal battle and not your job to convince them.
@Seabass927 my post was before I saw your post from an hour ago.
I think if the tele-med works, OK. Make sure the specialist gets the key medical info first and from the recent records and key specialist input. It seems they will from what you had written.
Don’t get pushed into taking her out IMHO. Let the tele-med work first. If this confirms the plan of care, or any adjustments…
I believe I may be thinking along what you are thinking. Hang in there!
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My thoughts go out do all of you in the trenches. I still get a little PTSD when I read your posts after everything I went through with my dad (Alzheimer’s). My dad was in Memory Care for four years and we saw a lot of different versions of dementia. I would definitely say no to replacing the pacemaker.
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If a sibling doesn’t agree with the care, make it clear he/she is welcomed to come deal with it and take your mother to the outside appointments if she wants. Put that it your notes too. “Betsy wants mother to see Dr. Brown and the facility knows that is okay if Betsy comes to transport mother to those appointments.”
There are 6 of us dealing with my mother (85, cancer patient). We all do what we can to help, but no one gets to tell anyone else what to do. If he/she wants to do it (deal with medical bills, drive to appointments, help around the house), he/she can do that. Can’t tell anyone else what to do.
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@Seabass927 a book that is often recommended and parts of it were helpful to me is “The 36 Hour Day”. It is the most recommended book on caring for dementia.
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thank you @Hippobirdy. Yes, intentions are good, and I need to remember not to villainize them.
@somemom I am in complete agreement with you on the pacemaker, I believe my dad would agree, and one of my siblings. Fortunately, my dad is still the decisionmaker, and he’s taking a very realistic and compassionate approach thus far.
Yes, I can tap the supportive sibling to block and tackle. He’s been doing some of that, but would do more if I asked. Great suggestion.
I agree, that with all of her co-morbidities, it is a perfect storm and you’re right that she probably was just a ticking time bomb and we didn’t know it. The UTI, Covid, CKD, afib - we will never know which variable put her condition in freefall. And I think my one sibling is looking for that certainty that may never come. Thank you for your kind words, and I salute you and everybody else on this thread who is going through their own caregiver struggles. I’m in awe of your compassion and strength.
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