If SECONDARY caretakers are at the breaking point...

Dellafair

If SECONDARY caretakers are at the breaking point...

...then what does that say about the whole situation?!

Our LO (my grandmother) is 81 years old and in the late stages, probably 6e from what I understand it; she can still speak in sentences but is bedridden and incontinent. She used to live with her husband and a son until she fell and broke her hip 2 winters ago. They couldn't even lift her so her eldest daughter, my mom, had to swoop in to take charge. The resulting complications from surgery and rehab led to an extended hospital stay, and afterwards Mom took it on herself to move Grandma into our house an hour away from everyone else. So began our family's dementia journey.

My mom is a nurse with much geriatric experience, so she skillfully oversees our LO's care and would stay home with her full-time if our means allowed. However, it is her full-time job that funds the roof over our heads and everything else we all kinda need to survive. Mom also has diabetes, hypertension, and only one trusted friend-- my stepdad, who also works full-time.

Adult daycare? Outside help? Respite care?! No, Mom does not trust "strangers" (her word) to care for her mother. When she can't do the care herself, her unemployed mentally ill daughter is always available: that is, me. And whenever we both need a rest? There's always Mom's brother, Grandma's favorite son who has a great rapport with her... and also a drinking problem. He'll come, all right, with a bottle and cigarettes-- and also leave his frail but thankfully-without-dementia-(hopefully) father at home alone with his pacemaker and his temper.

Last I heard, Mom was in the process of getting the POA. She's probably the only one who's competent enough to; my grandparents' marriage has long been rocky, and after we took her in we found considerable evidence that Grandma was neglecting herself/was neglected, such as toenails over half an inch long and skipping BP meds for a whole year. We have a hospital bed, a wheelchair, a walker, and a steady supply of diapers and gloves, though I don't know whether these are due to hospice or Mom paying out of pocket. Frankly I've been afraid to ask, since the day-to-day realities have been hard enough for me (and my anxiety disorder).

Grandma was always a difficult and sometimes even abusive person, to the point where I dreaded every family outing and even my mom sometimes asked me to lie for us to avoid visiting her and Grandpa. I often think to myself that dementia only made her already existing issues much, much louder: Clinging, mood swings, manipulation, crying, shouting, fighting.

...but even she probably deserves better than our current situation. My older sister and I, possibly even my stepdad, agree that this means placement. Mom says anything but. She thinks grandma has a better quality of life here because she has more supervision and less need of psychiatric drugs-- to say nothing of the understaffing and risk of COVID. Mom has worked in nursing homes herself, and has never liked how they treated pur LO the last few times she was in them recovering from sugery and strokes. Who the h am I to argue with Mom's vast experience? Even if it could very well kill her, her marriage, Grandma, and possibly also me?

I am afraid to call the ALZ hotline because if authorites find out and feel the need to intervene, my mother will get angry and likely take it out on me. But I am almost at the point where I don't care anymore. Whenever Grandma screams I'd almost welcome the neighbors calling 911 because at least someone might come and take me/her away from all this. I can't help but scream back sometimes, even though it makes me into the villain whenever someone else hears me. I hit and break things because of course it is wrong to hit or break other people.

Writing this post has been the main thing currently keeping me from calling the suicide hotline (988 or 1-800-273-TALK (2853)) and/or checking myself into a hospital. I may still do something like that yet, if I can get over my fear that Mom would never forgive me and possibly dump me out on the street. (And also possibly getting COVID while hospitalized, but that's another story.) But even the street is starting to not look too bad either, honestly. I have friends, but not many, and there's only so much they can do either.

I've been a long time reader and am grateful for what everyone's already shared here to make me feel a little less alone and adrift. Thanks for listening.

SusanB-dil

Hi Dellafair - so sorry you are dealing with all of that!  It is a lot.

Do call the helpline. 

You can only do so much, and if you feel you are drowning, then please do reach out.

Belle713

Hi Dellafair, I don’t even know what to say after reading this. Sending you hugs, strength and prayers. I’m brand new to this forum and this disease but my heart aches for what you’re going through. You aren’t the villain. I feel the same way, I just rely on my filter to keep those thoughts in my head and not coming out of my mouth. So far so good but it’s a daily struggle, that’s for sure! I’m sure everyone here can relate to that helpless feeling you’re experiencing. Please reach out for help if you continue feeling overwhelmed. I’ve been there and those feelings WILL pass!! 

Take care of you 

Iris L.

Della, if grandma is screaming all the time, her quality of life is not good.  Medications (antispychotics or other meds) may help.  Also, if the screaming is new, it may be because of a silent urinary tract infection.  This is very common.  Bring this to your mom's attention.  Urosepsis, which is bacteria entering the bloodstream from the bladder, is serious and can be FATAL.  In younger adults UTIs can be treated with oral tablets, but frequently frail elders need to be treated with intravenous meds in the hospital.  Only the doctor can determine after a urinalysis and culture, to make sure the appropriate antibiotic is chosen.

Grandma should be evaluated ASAP by a doctor.  It may be a UTI, or it may be something else.  No one can say just by looking at her.  A stay in the hospital for evaluation can be helpful in many ways.  This can give time to think about placement or other future options in a non-emergency, thoughtful way.  Often PWDs do better in a facility, because the routine is more structured.  A normal busy household can be torture for a PWD, whose mind cannot process even the smallest change. 

I think if you read many threads, you will find many caregivers on their last rope.  But there are solutions.  We all have to change and adapt our perspectives.  Living with dementia as a patient or as a caregiver is one of the hardest things in life.  Dementia is terminal.  Don't  let it take you or your mom down too.  Call the Helpline or a Hotline if you need to!

Iris L

Dellafair

Everyone, thank you for your kind thoughts and words. I'm still here, and stable; had a heart-to-heart with Stepdad, who had to deal with caring for his own parents for a long time. He shares my concerns about Mom overextending herself, though they've unfortunately been falling on deaf ears so far.

Am in the process of writing an in-depth reply to Iris, who has provided me much to consider for both Grandma's health's sake and my own role in our family dynamics. First I've got to touch base with Mom.

Dellafair

Iris, Grandma's screaming is not necessarily new; she has had irregular moods and occasional combativeness for multiple decades before her diagnosis. It's part of what made her so difficult to deal with even back when she had all her faculties, all the way back to my childhood and before.

That being said, I do know that her meds have been requiring considerable adjustments over the past 6+ months, so maybe that's another possibility. Thankfully we do have an appointment for next week, including a blood draw-- here's hoping for useful, non-scary insights. Until then, we do have some clonazepam for an "as needed" basis and are considering taking up our doctor's suggestion of melatonin for sleep.

Mom has flat out told me that she does not want her mother to die in a nursing home. As admirable as this conviction may sound, I agree that it could backfire on her horribly. But I fear that no SNF or MC unit on the planet is going to be good enough for our LO, according to Mom. Half of her long healthcare career has been in nursing homes, so she is probably painfully aware of all the things that could possibly go wrong. And things actually have gone wrong for Grandma in previous temporary NH rehab stays, including multiple rehospitalizations.

...as you can imagine, it's very hard to argue with that. And that's not even beginning to factor in all the cultural/personality hangups! We could probably use a good social worker or several, if it were even possible to convince Mom to accept any outsiders' input about her family.

It's the many threads I've seen on here from other caregivers willing to share their own lowest points that convinced me it would be worthwhile to open up with mine. I'm so glad and grateful I did. It's already starting a positive avalanche of realizing that no matter how terrible things remain, I need and deserve to take responsibility for myself in the midst of all of it-- both online and off.

Iris L.

Dellan it is possible to set up a one person nursing home for your grandma.  Many have done it, including "His Daughter" from several years ago.  She called the caregivers her dad's Entertainment Committee, and he was mostly comfortable.

Your grandma doesn't sound comfortable.  Meds can help.  The psychotropic meds need to be titrated to get the right dosage for each individual patient.  It may take weeks to get to the appropriate dosage.  For various reasons, this drug titration may be done at a geriatric psychiatric unit.

If you have meds, use them.  Why delay? A consistent schedule may be better than an as needed dosage.  Keep in mind that meds like Xanax may be stimulating instead of sedating, in some older adults.

Your grandma can be helped; but it will take attention to detail of her non-verbsl communication and attention to her responses to medications.  Keep a detailed medical journal.  Also read about Validation and non-drug methods of communicating and calming.  There is a lot to learn.

Iris

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harshedbuzz

Dellafair-

You left your profile completely blank which makes it hard to offer advice.

*If you are considering self-harm, please seek immediate care

988 is the national hotline number*

Job one as a caregiver is putting your own oxygen mask on first like they say in the airline safety instructions.

It's not clear if you are a minor child or an adult? You say you are living with mental illness and unemployed; have you sought disability waivers and potential access to supports that could include alternate housing and a path towards independence? You come off as quite bright and worthy of more than being exploited by your mom.

HB

mommyandme (m&m)

I liked when I read that someone told their caregiving LO something like, “ if you die first I will put her in the first available facility.  Do you want input into where she goes? 

For them it worked. 

Dellafair

M&M-- HAH! I'll have to remember that!

Updated my profile after HB's valid observation that a blank one makes it harder to respond effectively. I think I was worried that non-members would see my info, but I was wrong about that.

Talking on here has been helping me regain the confidence necessary to reach out offline as well to trusted friends and family, who have been able to talk me out of danger. While our family's nowhere near out of the woods yet, I'm already in a better place. Thank you all for your concern. Longer responses to follow.

twocat

I am so glad you're feeling a little better. Reading your letter and the responses to it helped ME. This is tough, tough, tough. Let's hang in there, together. xoxo

Dellafair

Oh, Victoria. I'm not sure what will convince Mom.

The stroke that took away Grandma's ability to walk didn't convince Mom, because during our LO’s 2-month recovery away from us Mom just tended to get upset with hospital and nursing home staff whenever a problem arose with our her quality of care. She is great at managing and advocating for patients-- it’s part of what’s made her nursing career last so long-- but micromanages to a fault whenever her own family is concerned. It certainly doesn’t help that her day job IS in a nursing home so that she knows very well “how the sausage gets made,” if you’ll pardon the expression.

 Both of us getting COVID ourselves(possibly even twice!)didn't convince Mom. Either she called my unreliable uncle in for backup, or she just powered through in-home care for Grandma herself while still sick-- with PPE, admittedly, but still! Sick! I’m glad she stopped short of hauling me out of my own sickbed to help with our LO, but my goodness!

In other threads I’ve seen mentioning difficult family members, I’ve seen people in responses speculating about whether these people’s problems point to signs of AD or something in them as well. It would be early onset in Mom’s case, so I really, really hope not. Certainly all the extra stress she is subjecting herself to is eroding her already compromised health even further. But even my stepfather, with previous caregiving experience, feels powerless as a loving husband to convince her to let go of the need to handle everything herself.

I’ve been too overwhelmed with the day-to-day stuff and other issues to ask Mom how the DPOA process is going, but my older sister has offered to remotely help her with it. Whether Mom will accept or not, we will have to see.

Dellafair

HB, I had been so overwhelmed just with deciding to join and post that the extremely detailed profile creation process on top of that had seemed too daunting. But honestly, you were right: I can't exactly introduce myself on here so drastically and then not provide any more info than that! I've since added to my profile, including my own story; hope it clears up some things.

I always believed I was exploiting my mom by living with her, one of those stereotypical adult child "slackers." Mom raised us kids all on her own and was then able to put me through community college. I never could live, study, or work up to my potential because I was also juggling generalized anxiety disorder and a history of trauma besides. So last winter when Mom brought up her plans to move Grandma in, I just figured that participating in her care was "earning my keep." It's not like I had the power to veto or anything, as even back when I did have jobs I never made enough to contribute to the rent or bills.

Granted, I think I assumed her staying with us was going to be a temporary thing until she recovered from her hip surgery rehab and could go back to Grandpa and my uncle’s home an hour away. I don’t remember exactly when it hit me that Mom intended to keep Grandma with us for good-- though I’m pretty sure it was before our LO had a stroke this past spring. After that we moved to a bigger place together, my parents and LO and me, and she finished her PT rehab in this new place.

That’s a lot to unpack, I know... so after I write a few more posts on here and maybe rest a bit I might call 988 after all, or else use their related chat/text service. As I said I’m out of immediate risk, (at the very least I'm holding out through our LO’s next doctor’s appointment this coming Tuesday). but am still really drained and burnt out from worrying about everything and everyone.

Dellafair

Iris, thank you for the recommendations! I will look up "His Daughter"'s posts when I get the chance. One main hurdle is that both my parents have expressed reluctance to have strangers in our home for an ongoing period-- physical/occupational therapy for our LO was one thing, my uncle coming in to help was another, but this would be something else again. That is why I'm personally leaning towards placement for Grandma, which would at least take all these issues out from under our own roof.

Mom, literally a nurse, handles all LO's medications because she has a lot and both of us are afraid of any mistakes I might make administering them while not on her watch. Unfortunately that has generally limited pill-giving to before Mom leaves work in the morning or when she gets home late at night, which I'll be the first to admit isn't ideal at all.

That being said, I will definitely insist on the clonazepam since we do have it, especially since she did give some to Grandma on Friday and that turned out to be an unusually peaceful day. But the next she didn't, and problems definitely arose from that! Before Grandma's next doctor's appointment and in the future I will make sure to remind Mom of the importance of keeping her psychotropic meds regular-- it's a strange and troubling blind spot of hers.

(PS: I seem to be having trouble with quoted posts, which end up disappearing. Could this have something to do with how I type my posts in other programs and then copy and paste them here?)

May flowers

 I answered your other post, but came back and read this one. This is an awfully big burden for your mom to put on you especially refusing outside caregivers. I was trying to do this alone for several months but it really took a toll on me. A few hours a day can a world of difference and made things much more manageable.

No disrespect to your mom (or any nurses on the board), but my experience so far in this journey is that RNs seem less likely to understand the difficulty hands on dementia caregiving is compared to CNAs unless they have done it themselves 24/7. That is just my experience with caregivers so far. They were big on opinions but weak on hands on care.  We just let go a caregiver who was a retired nurse because she was so insistent with her ways of doing things that my LO was very agitated by the time she left every day, despite my asking repeatedly to stick to his routine. The younger CNAs just follow the plan, keep to his routine, and it works (so far).

I don’t know what kind of relationship you have with your mom, but if it were me, I would tell her you need xyz… such as the ability to medicate or caregivers  as needed, if she expects you to do her care. And if she doesn’t, I would be looking at ways to extract myself from the situation, even if it means getting on disability or moving in with a friend. If she does not provide you with the resources you need, including respite and help, then the level of care she wants for your grandmother is impossible.

Just my .02. I hope I didn’t come off as too harsh towards your mom, but that is the reality from my perspective (knee deep in stage 7)

(((Hugs)))

B.R.

My 87-year-old dad has Alzheimer’s (lives at home with my 88-year-old mom.) I checked his browser history because my mom is as wondering about some unexplained Patreon charges on his credit card. I was shocked and repulsed to find a ton of porn sites! This is NOT the father who raised me and has been a faithful loving husband to my for over 50 years. What should I do???

Iris L.

Dellafair wrote:

. She is great at managing and advocating for patients-- it’s part of what’s made her nursing career last so long-- but micromanages to a fault whenever her own family is concerned. It certainly doesn’t help that her day job IS in a nursing home so that she knows very well “how the sausage gets made,” if you’ll pardon the expression.

Della, one of our Peer Volunteers is Jo C, she was a high level supervisory nurse before she became a family caregiver.  She doesn't hesitate to declare that caregiving was so different from supervising and how shocked she was to learn this.  She has written many detailed responses,  you might look for a few of them.

What May Flowers says above about her experience with the retired nurse and CNAs sounds right.  

Iris

Iris L.

Dellafair wrote:

I always believed I was exploiting my mom by living with her, one of those stereotypical adult child "slackers." 

Della, obviously I don't know your story but it struck me to believe that you were exploiting your mom by living with her after college.  You seem like you have low self esteem.  I want you to do whatever it takes to raise your self esteem!  You have VALUE within YOURSELF, and it doesn't matter what other people do or don't do.  You need to be able to love yourself!

Iris

Iris L.

Della, I mentioned "His Daughter" to you earlier but after learning more about your situation I believe her approach would not be suitable at all for you. 

Your problem is your mother's approach to caregiving.  The other members have great responses.  Did anyone mention getting a hospice evaluation?  Hospice would give added help and another nurse for your mom to consult with.  Keep placement into a well-chosen facility in mind also.  Even at a facility, your family could hire private caregivers if desired.  But it would take the burden off of one or two (you and your mom).

Iris

Dellafair

Sort of an update: I'm waiting for news on Grandma's doctor's appointment, which will hopefully provide updates on whether infection is truly in play or whether we just really need to rethink how we're handling our LO's psychotropic meds. This feels like it could be a turning point, at the very least for me personally, so later on I'll start a new thread with whatever I find out.

I'll be the first to admit that I could step up in terms of giving my grandmother her psych meds, since do I have experience handling such things for myself. No one is preventing me from doing so; it's not like Mom locks all the pills away from me or anything. It's just that our LO is on so many different meds for so many different health problems that I'm terrified of making a mistake. And whenever I tell Mom I'm worried about making mistakes, there's probably a 50/50 chance that she'll respond "fine! I'll just do it all myself!" (I know, I know... annoying when it's the chores, terrifying when it's the health and well being of another family member.) We used to have a massive pill box with lots of different compartments labeled with when to take things, but it was one of many things we lost when we moved in the spring. I think I may have to suggest heavily that we get a new one.

More generally, I made a list of pros and cons about placing Grandma vs getting extra assistance with in-home care, and our family's possible comfort level with each. While there's no perfect solution and we will have plenty of reasons to hate either, I really think placement will be better for everyone concerned.

Families having to negotiate in-home care basically have to become mini-agencies themselves in terms of responsibilities, legwork, and paperwork-- I've seen that play out here plenty of times. That's just not realistic when two out of the three functional members of the household work full time, especially not when both of these are my parents and the decision makers of the family. So who would that leave to do most of the work? Yet again?! You guessed it!

I do understand where those of you who have suggested I ask for more help and authority to carry out our LO's care are coming from. For smaller things like pills and pillboxes, absolutely I can and should ask for what I need to help Grandma.

 But will the benefits of outside caregivers outweigh the laborious process of setting them up and maintaining all the logistics involved? I say no, absolutely not, no much how much power and control I might gain over the situation. Friends, I do not want power or control at all. All I want is rest. For me and my family both.

Dellafair

Trying to gather some of the information necessary to answer everyone's detailed questions about my LO has felt like the world's most depressing game of Telephone. And speaking of telephones, that's helped me realize... I might be better off trying to convince Mom to call the Alz hotline at 1-800-272-3900 herself, to consult a Care Coordinator about her mother.

If Mom hasn't chosen to request information first (and heck, sometimes even when she has!) she tends to get especially hostile about feedback she doesn't like. When my sister told Mom that one of her possible employee benefits was low cost legal and caregiving assistance for immediate family and grandparents, she also texted me warning me that she did offered to help, just in case Mom got offended enough about that to take it out on me.

Thankfully, Mom did not in fact take it out on me. What I haven't mentioned here before, is that on top of all the ordinary dysfunction that I'm more or less used to, we also recently lost Mom's favorite brother to COVID. Between worrying about how to tell Grandpa and my other uncle, and having to keep it from Grandma because of her dementia, we have been under a lot of extra strain.

So as terrible as it might sound, there's a slim chance that Mom might still be reeling and vulnerable enough to accept help, especially as long as she seeks it out in her own terms. I think Sis knows that too, or else she wouldn't have told Mom about her work benefits in the first place; that happened after she found out about our uncle's death. Mom let us know that he made himself extra vulnerable to COVID by overworking himself, and she did appreciate it when I warned her "I don't want to lose you the same way!"

Of course I'll need to be subtle about it, so all I've done so far is send Mom a link to Alz.org's resources... "Planting a seed," as both my sister and stepdad like to put it. Because I am forever sending her links, both requested and on my own, it's just joined part of that normal shuffle. I'll keep dropping similar hints; far better to do that than trying to call the hotline myself and then overloading Mom with unsolicited advice. I'll keep everyone posted!

Dellafair

Finally, a special thank you for everyone who mentioned the possibility of using disability to help move me out. I never knew such a thing was possible, so I'll need to research what my region has in terms of resources. I do have a sister out of state who's expressed willingness to have me move in with her (the same sister who offered to help Mom with the POA) but frankly neither of us are ready for such a huge step yet.

In fact, Sis and I are just now patching things up after a huge fight this summer over just this subject. She has even more problems with our mom than I do, so it's both ironic and incredibly apt that their personalities are very alike... which is why it's just as well they're separated by multiple time zones! So, yes, better for me to first see how far I might be able to get on my own.

Iris L.

Della, please accept my condolences to you and your family in the loss of your uncle.  

Della, you have made remarkable progress in just a few days!  I am happy for you.

Regarding employee benefits and your mom: as you have noticed, caregiving for dementia is not as straight-forward as caregiving for other ailments.  Thus, families find themselves having to seek out resources and cobble together whatever help they can find.  If employee benefits are available, use them!  They are a start.  The social workers are there to provide resources and to give answers, when they can. 

Regarding dispensing meds:  when PWDs reach your grandma's stage of illness, the idea is to figure out what meds can safely be reduced or eliminated.  The idea is to give comfort.  This is a topic to discuss with the prescribing doctors.  No medication should be stopped by the family.

In the meantime, make a spreadsheet of meds and times to dispense.  Your pharmacist can help.  Some meds may be crushed and dispensed in a food or coffee.  Again, discuss with the pharmacist.  

You sound like a capable young woman.  You can have a great life ahead of you.  Remember, everyone has self-doubt at one time or another.  But we count our blessings and consider our strengths and weaknesses, and go forth!  You can do the same, Della!

Iris