Lost, need advice

MamaBear937

Ok, so this is going to be long. Please bear with me. I feel it's important to give a bit of backstory so this all makes sense.

Last year, my mom's health started declining. She's never been in great health, and has always had issues with her heart and diabetes. However, last year, she started having to ask for more help: running errands or being driven places, etc. This was somewhere around March or April. Gradually, her physical health declined and eventually I started coming every day to help her with basic daily routine since Dad still worked full time, and was never really familiar with how to take care of someone else. He'd always been the hard worker who brought home the bacon, and Mom had always been the home maker and caretaker. Over the months, she became weaker and weaker, and I prepared myself every day for the possibility that she would pass.

But she didn't. She hit her lowest point sometime in December last year, and then after that she started gaining strength physically. But her mind was not the same. It was a drastic enough change and suddenly enough that we were surprised and definitely noticed the difference. She started saying things sometimes that didn't make any sense. Things like she was certain there was a recording of her in the studio in the kitchen. She was certain that she had sinned so terribly she could never be forgiven (she's always been a devout Christian). But overall, aside from having to frequently convince her that she was not condemned, she was doing better. She was gaining strength physically and we were hopeful.

However, her mind has just continued to degrade, although she has an absolutely mind-blowing amount of physical strength now. She's gone through different phases, but they've all included resisting basic needs and care. For a while, it was eating. She refused to eat. We couldn't get her to take more than maybe a few bites a day for a concerning amount of time. Granted, she's on a very restrictive diet due to digestive issues. I don't know what kind of issues specifically, because Mom and Dad always believed in faith healing and never wished to see a doctor. I know she's gluten intolerant, but there are many other foods that bother her stomach as well. I always thought that this was why she was convinced she couldn't eat.

As her mental state declined, Dad finally decided it was time to drop his work hours to part-time and take up the role of caretaker for this woman who had faithfully cared for him, his children, and his home for 44 years. It took some adjustment, and it was certainly amusing to watch his attempts at basic things like making toast completely flop. But he kept trying and he got better every day. He was so good with her, and I just don't know how he did it. Eventually, Mom got to the point where she would eat if you set it in front of her, but she always says she doesn't want to or that she can't (for various reasons, most commonly because there's no food for her even though there is, or because she isn't allowed to eat).

Unfortunately, in late April this year, he contracted COVID and fell ill. He insisted I stay away, even though I'd already had it previously and seemed to be immune to it since (I'd been exposed again after but didn't catch it). But he was being Dad and thinking of everyone else before himself. He said he'd be fine to continue taking care of Mom despite feeling awful.

But he wasn't. He quickly worsened to the point he could barely get out of bed to use the potty chair set up next to his bed. He still insisted that I stay away, he didn't want my kids to get sick (even though they'd also had it already), and he even told his brother not to come and help out. Thankfully, his brother had more strength to be stubborn and he and his wife made the trip out here from where they live, a state over. Although I still feel like I should have been the one to come and help, I'm incredibly thankful for my uncle and his insistence on coming out. Dad couldn't do anything for himself, let alone for Mom. So, he cared for Dad and my aunt cared for Mom.

Late night on May 13th, my aunt called and let me know he had passed away. He had a lot of issues with his lungs as it was, from his days in his youth when he would paint cars without proper protection or ventilation, and his lungs simply couldn't hold up. I'm only telling the story here, and I'm still hurting so please don't turn this into a COVID debate. If you have something to say about this, write it in a journal or somewhere else, but not here.

Since then, the biggest struggle with Mom is that she refuses to go to the toilet or shower. And because she's got such an incredible amount of physical strength now, it takes 2-3 people to get the job done; she fights against us so hard. Thankfully, I've got several aunts nearby who come and help me out. Mom has to wear adult diapers, but they aren't made like baby diapers and they don't contain very much mess, so at least once a day we have no choice but to fight her into a shower. She'll kick, scream, punch, pinch, bite, etc; and usually comes out of it with bruises that she's inflicted upon herself. We feel awful about it, but don't know what else to do. It's either that or let her sit in her own mess and let it eat away at her skin.

Mom has gradually gone from having one of these types of days once or twice a week to it being almost daily. The good days are much more rare. She's constantly finding things to worry about, and she gets a nervous stomach so she's constantly feeling sick to her stomach. It'll be things that a person with the ability to reason would never worry about, and you can assure her that it's ok, but she won't believe you. 

I arrive each morning with a smile on my face and a cheerful attitude. I give her a hug, but that's the wrong thing. She gets upset that I'm there. Even if I don't give her a hug, she's still upset that I'm there. All day long, she keeps telling me I need to leave. We can't trust her by herself, because she has tried to hurt herself in the past since her mind started degrading. Some days are worse than others. Some days she worries quietly, other days she's downright mean and violent. Sometimes she'll start hitting and punching me just for cooking her dinner. On the days when she's more subdued, she'll still insist that I shouldn't be cooking for her. We've gotten to the point where we have my (amazing cook) aunt do most of the cooking at her house, and then she brings it over. But occasionally, we run out of something and I have no choice but to make more.

So basically, I just don't know what to do. I don't know how to deal with her and her moods. I don't know how to get her daily care done without the fight and the struggle. I don't know how to help her. We've tried the typical suggestions like playing music. She used to love music, but now it just makes her more upset. We've tried turning on her once-favorite TV show, but she gets mad about that too. I've tried encouraging her to read her favorite books, she refuses. I've tried reading them to her, or reading the Bible to her, but that upsets her further. I've tried encouraging her to do word puzzles, she refuses. We've tried putting together puzzles, and she'd do them when Dad was still alive; if he started it first. Now she refuses to participate in that too. Some of my aunts have had some success getting her to play card games with them and that will occupy her mind for a short period of time, but for some reason I can't get her to do it with me. She wants no part of anything that might even possibly be good for her.

I know that a lot of this is probably an inability to express her grief over the loss of Dad. As much as it hurt me to lose him, he'd been her life partner for nearly half a century. I know she must miss him, and I know she understands that he's gone (at least most days I'm fairly certain she does). But how do I help her with that? How do we get past the fighting and the struggle? How do we help her? I just feel so lost, I hope someone can help me.

loveskitties

You and your family have had a very difficult year.

You mention that your folks always believed in faith healing.  Is that also your belief, or do you seek medical treatment for yourself and your family?  The reason I ask is that your answer makes a big difference in what can be suggested to you regarding the situation with your LO.

To be blunt, it seems that the behavior you describe indicates your mother needs more help than any one or more folks can deal with on a daily basis.  A medical professional could get the ball rolling to recommend testing, meds and possible placement.  

The violence to herself and others is very concerning.

Please let us know how far down the medical road you are willing to go.  

MamaBear937

loveskitties wrote:

You and your family have had a very difficult year.

You mention that your folks always believed in faith healing.  Is that also your belief, or do you seek medical treatment for yourself and your family?  The reason I ask is that your answer makes a big difference in what can be suggested to you regarding the situation with your LO.

To be blunt, it seems that the behavior you describe indicates your mother needs more help than any one or more folks can deal with on a daily basis.  A medical professional could get the ball rolling to recommend testing, meds and possible placement.  

The violence to herself and others is very concerning.

Please let us know how far down the medical road you are willing to go.  

Both my brother and I have gone down a different path as far as our beliefs. I'm not opposed to medical treatment when necessary, although I do prefer to go a more natural-treatment route whenever possible (e.g.; I had gallbladder issues and my first step was to change my diet rather than to see a doctor, but when the issue persisted and became serious, I went in and had the gallbladder removed as my last resort). My brother was a paramedic at one point in his life, so he's more likely to go the medical route sooner than I would.

I guess mainly my hesitance to seek medical assistance for her is because I know neither she nor Dad would have wanted it, and I feel like I'd be disrespecting them if I were to seek it for her. I also know that most of my family--including those helping me care for her--would be unhappy with that decision as they also believe in faith healing. 

And, of course, there's also the matter of how in the world would I even get her to a doctor in the first place. I wouldn't feel right asking for help from my aunts, knowing it goes against their beliefs. My brother lives 1,000 miles away, so he wouldn't be much help. But going outside or leaving the house is another one of those things you can't get her to do of her own volition. She's more likely to lock herself in--and you out--than to go out herself (and in fact, she has locked one of my aunts out once). She really could stand to see a dentist as well (which strangely enough, was something they weren't opposed to, but wouldn't accept any medications for any of the procedures), but I can't get her out of the house and into the car. I'm also not sure where she stands insurance wise, and we still haven't been able to meet with the probate lawyer in regards to Dad's estate, insurance, etc. because they were backlogged. He had a will, but he signed her as POA. And, well, she's obviously not capable of being a POA for anyone. My brother has primarily been dealing with that aspect, since he was named executor and also he's the oldest and a lot smarter on these kinds of things than I am.

And lastly, how does consent to treat work with someone who isn't of a mind to care for themselves? Assuming I were even able to get her into a doctor, she'd be kicking and screaming the whole way and would not want treated. Do they have to acknowledge and respect that? Would my brother and I have the authority to override her?

dayn2nite2

Are you and all the others prepared to essentially give your lives up to keep her at home?  Because that’s what it’s going to take.

What is their financial situation?  

She at minimum needs to establish care with a doctor.

Re:  the food stuff.  I’m not trying to offend, but her food issues prior to her cognitive issues sound very similar to an eating disorder.  Would you consider that to be the case?  What was her psychological health prior to all this?  Is it possible the religiosity and “faith healing” were masking a mental illness?

The entire situation sounds too large to deal with at home. 

I think you’re looking at placement, probably in a nursing home.  Whatever cause is written on your father’s death certificate, I will tell you that the stress of being her caregiver had a great deal to do with his death.  Are you willing to shorten your life to keep her at home?  And your children lose their mother, whose life will be consumed with their grandmother’s needs.

loveskitties

You mentioned that she has tried in the past to harm herself and that she is combative with you and others without true provocation.  This is a huge red flag.  You can't allow this behavior for everyone's sake.

If she, you and your close family are against medical treatment for this condition, your only option will be to have 24/7 in home care for her for the remainder of her days.  You must choose that care wisely and someone of like mind regarding treatment options or you will find that you are constantly seeking new help or may even have the police at the door if she really harms someone else.

The POA for your Dad is of no consequence as I believe it ceases on death.  Then the will takes over.

If neither you or your brother are an alternate POA for your mother (assuming father was first), you might have to get guardianship over her in order to take any other actions.

You may find yourself or another care giver having to call 911 if her harmful behavior to herself or others escalates further.  At that point, you will not have any options unless there is a legal document stating that she refuses all medical treatment.

harshedbuzz

Mamabear-

I am sorry for the loss of your dear father and the reasons you find yourself here.

IMO, the most important thing I feel you can do right now is to get your mom in to see a traditional medicine physician. It sounds as if you and your brother are accepting your mother's decline as inevitable. Odds are great that it is, but there are certain conditions that mimic dementia that are eminently treatable and potentially reversible if treated promptly. You mention your mom has been on a restrictive diet for gut issues and that she hasn't been eating- she could have a treatable deficiency like B12 or Thiamine. Alternately, she could have a common hormone deficiency that needs to be treated pharmacologically. 

I don't want to offer false hope; most of the members here have a LO who has a form of dementia that is basically untreatable save for psychoactive medications for mood and behavior, but my dad had both. He had mixed dementia; one was the result of a Thiamine deficiency which was treated with IV supplements and resulted in him improving quite dramatically- not quite to his former baseline because it wasn't addressed as soon as it might have been but enough that he was able to remain in his home longer before needing more care than we could provide at home. 

HB

MamaBear937

dayn2nite2 wrote:

Are you and all the others prepared to essentially give your lives up to keep her at home?  Because that’s what it’s going to take.

What is their financial situation?  

She at minimum needs to establish care with a doctor.

Re:  the food stuff.  I’m not trying to offend, but her food issues prior to her cognitive issues sound very similar to an eating disorder.  Would you consider that to be the case?  What was her psychological health prior to all this?  Is it possible the religiosity and “faith healing” were masking a mental illness?

The entire situation sounds too large to deal with at home. 

I think you’re looking at placement, probably in a nursing home.  Whatever cause is written on your father’s death certificate, I will tell you that the stress of being her caregiver had a great deal to do with his death.  Are you willing to shorten your life to keep her at home?  And your children lose their mother, whose life will be consumed with their grandmother’s needs.

I've already been coming over every day for over a year to take care of her. That's no different. Actually, it's been easier in that regard since Dad passed, because my family stepped in more in his absence and now I get 2 days off every week.

I have no clue, my brother has been handling that and the bills are getting paid, but I'm not sure how he's doing it. We haven't been able to talk with a lawyer yet regarding the finances and how to handle them in this situation.

I'm pretty sure it isn't an eating disorder. She's always had to watch her sugar/carb intake due to diabetes, and discovered several years ago that gluten was the cause of some other issues. Eventually, other foods started to make her sick, things like fatty foods, dairy, or sodium (common allergens/aversions). But adding that onto the other requirements really cut down on her selection a lot. Some of it seems to have gotten slightly better, but not a lot. Mostly, we've just learned how to make her food ourselves, thus cutting out any preservatives and things like that that you'd find in pre-packaged foods and such. Everything is now organic, limited spices/seasonings (a small amount of salt, but that's about it) and it seems to be working ok. But she can't handle beef and she was already allergic to pork (it would give her hives, always had), so that leaves us chicken or turkey, and certain types of fish (red ones upset her stomach, but white ones are ok). It doesn't seem likely that she previously had any mental illness, she's always been rather stable prior to this. She never had a history of depression or other harmful tendencies (self or otherwise) before this either.

I am also confident that my dad's death was not stress related. Once he got through the adjustment period from being the worker to being the caretaker, he actually began to enjoy it. He was happy, and always willing to let me teach him something new (I still came over frequently during this time, just to make sure they were both set on food because I knew he was still learning how to cook; but he was doing great with her and didn't need me as much). She was much more cooperative for him than anybody else. When I was over, if I'd try to help her get in the shower, she'd fight. All he would have to do was walk up, look at her with that loving look of his, and say, "It's important we get clean. I want you to cooperate with your daughter." And she would. If he was the one helping her in the shower, she wouldn't even fight at all. Most he'd get was a little bit of complaining, sometimes bargaining. He never had to be forceful, he could always talk her into it. And that's why I think a lot of her problem now is a lack of ability to express her grief, and a lack of knowledge of how to deal with it. If I knew how to help her with that, I think things would be a lot easier. But none of us seem to have the magic touch that he had. When he got sick, it was very obviously COVID, but they tested him after he passed and confirmed that. He couldn't breathe, let alone even speak, and he had all the symptoms. Oh, also, thank you for your input that I'm being a terrible mom. I really needed to hear that during this time of mourning and barely functioning. If I weren't here taking care of her for 40 hours a week, I'd just be working another job 40 hours a week which would come with its own stresses. The primary difference is that although I get paid to take care of her, I would do it for free. I wouldn't work for anyone else for free.

 

loveskitties wrote:

You mentioned that she has tried in the past to harm herself and that she is combative with you and others without true provocation.  This is a huge red flag.  You can't allow this behavior for everyone's sake.

If she, you and your close family are against medical treatment for this condition, your only option will be to have 24/7 in home care for her for the remainder of her days.  You must choose that care wisely and someone of like mind regarding treatment options or you will find that you are constantly seeking new help or may even have the police at the door if she really harms someone else.

The POA for your Dad is of no consequence as I believe it ceases on death.  Then the will takes over.

If neither you or your brother are an alternate POA for your mother (assuming father was first), you might have to get guardianship over her in order to take any other actions.

You may find yourself or another care giver having to call 911 if her harmful behavior to herself or others escalates further.  At that point, you will not have any options unless there is a legal document stating that she refuses all medical treatment.

__________________________________________________________________________

I mean, we don't necessarily "allow" it, in that we don't ignore it. We make it clear that behavior is not acceptable. I'll usually grab her hands and use my firm mom-voice like I'd use with my toddler and tell her that she is not being nice and she needs to settle down, and most of my aunts do the same thing. Sometimes it helps. Sometimes it doesn't. Usually she'll stop hitting and just yell instead. I'll take the yelling over the hitting. Sticks and stones and whatnot. I've learned not to let any of the mean things she says bother me because I know if she were in her right mind, she would be absolutely appalled by her words and behavior. She doesn't mean any of it. We keep all dangerous items (like kitchen knives or scissors) well out of her reach. It's a pain in the rear end for us, but it's for everyone's safety).

We've already got 24/7 care set up with family. We have a schedule set up so that I come during the day, 5 days a week, and a different aunt or family member comes each night (the beauty of a big family, lol), and then whichever aunt stays the night before one of my days off will stay through that day as well. Of course it's inconvenient for everyone, but life is just inconvenient sometimes. She would have done it for me, so I feel it's only fair I return the favor. I know she made many sacrifices as a mother and I feel like I'd be being ungrateful if I dumped her off with someone else. Although at the same time, I'm not sure I feel qualified to take on her condition either. I've certainly learned a lot of patience through it, but I'm nowhere near as patient as Dad was. Sometimes I think he was even more patient than Jesus himself, haha. Anyone who has been raised in a church will remember the story of Jesus losing his temper in the temple and overturning tables. For as long as I or my brother (older by 9 years) have known, he has never, ever lost his temper, not even for a tiny moment. Anyway. I guess I'm torn on the subject, but I know I wouldn't have my family's support (except maybe that of my brother, if he really knew the full extent of the situation) if I were to decide to seek medical treatment for her or to put her in the care of professionals.

I believe, if I understand correctly, she was named POA in his will. I could be wrong. I do know he never expected her to have this sort of issue, nor for them both to fall ill at the same time. I don't think he ever thought to update his will when this happened. I'm sure he figured if he was incapacitated or if he passed first, she would be perfectly capable of handling the POA responsibility. Anyway, I suppose a lawyer will be able to help us better understand all of this, we just are waiting on our appointment day.

Oh, and on that topic, you've reminded me that actually yes, they both had a legal document refusing medical treatment. That's why the paramedics didn't attempt to resuscitate Dad when they got there. I was the one who dug out the documents, since my brother lives so far away, and I found that document for both of them in the process. I was in a bit of a fog and I'm not sure I understood all of every document I pulled out, but that one was pretty simple and clear. So that could be a problem, I'm sure. I don't know if it makes a difference if she's no longer of a mind to make decisions for herself though. 

harshedbuzz wrote:

IMO, the most important thing I feel you can do right now is to get your mom in to see a traditional medicine physician. It sounds as if you and your brother are accepting your mother's decline as inevitable. Odds are great that it is, but there are certain conditions that mimic dementia that are eminently treatable and potentially reversible if treated promptly. You mention your mom has been on a restrictive diet for gut issues and that she hasn't been eating- she could have a treatable deficiency like B12 or Thiamine. Alternately, she could have a common hormone deficiency that needs to be treated pharmacologically. 

_______________________________________________________________________________

I guess it is possible it's a lack of a certain nutrient or vitamin. We've experimented with a lot of different foods to try to find something she can eat that will provide her with all the nutrients a body needs, but I won't lie, it hasn't been easy and I wouldn't be surprised if there's a lack somewhere. Would a multivitamin possibly help? Or is it likely it's too far past that point? I wouldn't even know how to go about finding out from a doctor if this is the case, since it's a very complicated situation and I'm quite certain I can't get her to one physically.

jrkubr

Very sorry to hear about this difficult situation. Everyone is different, of course, but my mother, also fought, yelled, acted out re: toileting. She ranted and raved and ripped off her adult diapers, refused to wear them, left her business all over the place, and verbally attacked anyone/everyone when she was in one of her highly agitated states. Then she wouldn't remember it, and if described to her, she was horrified about the behavior. She is at home, with 24/7 care. Her internist prescribed Zoloft, which was helpful, and he was surprised it worked so well. After a while other behaviors like unprovoked screaming and delusions increased and he added Seroquel, which also helped to minimize the most extreme outbursts. I understand these meds don't work on everyone, and they can make things worst for some, and that you need a doctor to prescribe, and be willing to trial and error keep at it, but my personal experience was that these helped my mother. And they didn't seem to harm her, or her thinking, or her condition, in any way.

Iris L.

If she is doubly incontinent and resisting showers, she is past the point of reading books, doing word puzzles and playing cards.  When I was in medical school, I had a patient like your mom with severe vitamin B12 deficiency who had to be hospitalized.  We treated her with massive doses of vitamin B12, and there was significant improvement in a few days.  I'm not saying this is the case for your mom, this is just an example.  

If you (the family) don't want medical intervention and you don't want placement, what exactly are your questions? Someone will need legal control otherwise the government will appoint a public guardian when a crisis ensues.

PWDs need consistency and not to be overwhelmed in their environment.  I don't know what you have established in the home but it sounds like it would be overwhelming for me.  My suggestion is to make her environment very simplified.  Don't ask questions like "do you want to take a shower?"  Set up a gentle, peaceful routine.  There are many, many threads on incontinence and showering.  There are different qualities of disposable undergarments.  Make use of adult wipes as much as you can. 

Consider a doll or a robotic pet.  Many PWDs are calmed by these.  There are many threads on these, too.

Also, read the online reading material, such as the stages of AD and Understanding the Dementia Experience.

Iris L.

harshedbuzz

harshedbuzz wrote:

IMO, the most important thing I feel you can do right now is to get your mom in to see a traditional medicine physician. It sounds as if you and your brother are accepting your mother's decline as inevitable. Odds are great that it is, but there are certain conditions that mimic dementia that are eminently treatable and potentially reversible if treated promptly. You mention your mom has been on a restrictive diet for gut issues and that she hasn't been eating- she could have a treatable deficiency like B12 or Thiamine. Alternately, she could have a common hormone deficiency that needs to be treated pharmacologically. 

____________________________________________________________________________ I'm pretty sure it isn't an eating disorder. She's always had to watch her sugar/carb intake due to diabetes, and discovered several years ago that gluten was the cause of some other issues. Eventually, other foods started to make her sick, things like fatty foods, dairy, or sodium (common allergens/aversions). But adding that onto the other requirements really cut down on her selection a lot. Some of it seems to have gotten slightly better, but not a lot. Mostly, we've just learned how to make her food ourselves, thus cutting out any preservatives and things like that that you'd find in pre-packaged foods and such. Everything is now organic, limited spices/seasonings (a small amount of salt, but that's about it) and it seems to be working ok. But she can't handle beef and she was already allergic to pork (it would give her hives, always had), so that leaves us chicken or turkey, and certain types of fish (red ones upset her stomach, but white ones are ok). It doesn't seem likely that she previously had any mental illness, she's always been rather stable prior to this. She never had a history of depression or other harmful tendencies (self or otherwise) before this either.

I guess it is possible it's a lack of a certain nutrient or vitamin. We've experimented with a lot of different foods to try to find something she can eat that will provide her with all the nutrients a body needs, but I won't lie, it hasn't been easy and I wouldn't be surprised if there's a lack somewhere. Would a multivitamin possibly help? Or is it likely it's too far past that point? I wouldn't even know how to go about finding out from a doctor if this is the case, since it's a very complicated situation and I'm quite certain I can't get her to one physically. 

The bolded is pretty alarming in the context of a vitamin deficiency- those are the very foods that are rich sources of fortified or naturally occurring B12 and Thiamine in the diet. Cobbling onto what Iris mentioned, injections of IV treatment with these vitamins is called for if things get to a point where cognition is impacted. I would think a daily multivitamin would be like taking a butter spreader to a gun fight. 

I would be beyond sad if your mother's decline was treatable and no one stepped in to got her the help she needed. It's a simple blood test to determine if this is a treatable issue or not. 

dayn2nite2

What you read in my post I have no idea, but nowhere did I say you are “a terrible mom.”

I pointed out when you’re taking care of someone with dementia that time comes from somewhere, so do you think that time and energy you’re spending on your mother is benefiting them?

I won’t be offering any other thoughts, maybe someone else has something to offer you that you find more palatable.

Emily 123

I'm so sorry for your losses, both of your mom's and of your dad. Your dad was supplying a lot of the security and routine that propped your mom up, and his loss has driven her regression along faster.  I'm guessing you've read this: http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

I found the link below helpful as some of the stages are fleshed out a bit more.  There's also a checklist that's more detailed that I really like.  It's at the bottom of the page--you have to give an email to download the file, but they do not spam.

https://tamcummings.com/stages-of-dementia/

Your mom may be far enough along that she can no longer do much in the way of activities.  Asking her to do them when she can't sets her up to fail, and possibly lash out in frustration.  She might be beyond a point where she'll be able to reconcile your dad's death.  If she's lost that ability to process it, trying to prompt it may lead to frustration on her part. (And I don't know if that's what you're doing...just saying that the PWD picks up on the emotional cues, because language becomes hard for them to decipher.)

So. Why not be brutally honest with your brother about what you're seeing and discuss the guardianship?  I think you both would be more open to at least treating your mom's symptoms (not any of her diseases, though the vitamin deficiencies would be worth treating) so that she can at least have some peace as she moves towards her end.  She is trapped by this disease--and I'm not saying dope her up to the gills, either, just something that reduces the fear and anxiety and that let's everyone be together safely.  The obstacles to overcome would be the disagreement by your aunts and the fear that you aren't following your mother's wishes. I'm thinking that hospice might fit the bill in terms of limited physician oversight, if you can get one on board to sign off on it, but would defer to the forum's veteran's. Anyway, It's a very tough decision, and I wish you luck.  It's never easy.

MamaBear937

Thank you all for your helpful words of wisdom. It sounds like there's a good chance vitamin deficiency may be a large part of what's going on here. I'm going to have to see what I can do about that, given the circumstances. If it were as simple as just giving her a supplement, I might could get more people on board with it (although how I'd get her to take it is another matter completely). I don't know if that is feasible. Does anyone happen to know if there is any way these days to have a test done at home? I know I won't be able to get her out of the house to go see a doctor, but if I could get the ball rolling with a home test, just to see if vitamin deficiency is indeed a problem, I think it would be helpful.

Emily 123

  It's not going to be safe to guesstimate targeting her with specific over the counter supplements, especially without a series of labs as you do it, since high dosing some supplements can throw other levels out of whack (Vitamin D -> Calcium).  Some of the things (that could be low) would best be absorbed via IV, which I'm guessing is not an option.  Labcorp does make a 'lab-in-a box' for home care that you can google, but you would still need to get someone to do the blood draw.

The slowest and steadiest way would be to supplement with a daily multivitamin and adjust her diet.  It sounds challenging to get her in the sun at all--but that could help with vitamin D.

If you want to expedite this, so that you won't be flying blind, you'll need a doctor or NP.  I do think nowadays that practitioners are less traditional, and it would be easier to find one that would be respectful of your mother's religious beliefs. So many offices can do telehealth appointments.  You probably could find one that would do an initial visit over the phone or computer, given the limited scope of what you want to address. If you used a PCP for your gallbladder maybe they could be of help? Or recommend someone who would be a good fit for your mom?  They could write an order for a home lab draw, and work with you to supplement your mom's diet as needed.  Best wishes..

Prempuff

Hello mamabear 937

My mom was the exact same way. She would punch, kick, bite, scratch, or even pull hair if it meant to not touch her. Mom doesn't get around anymore. She is incontinent and bed bound. So her personal needs had to be addressed. I too was frustrated and didn't know what to do. 

I called up her Dr. and explained what was going on. She prescribed mom some antipsyschotic medication. What a world of difference...I can can for her without be beat up.

Speak to her Dr. 

And know that its not you. Its the disease! 

ButterflyWings

Hi MamaBear - I am guessing your mom does not have a Dr, if I understand your family beliefs in faith healing properly. Maybe it is easier to think of this as a safety issue and a compassion issue, rather than a "medical one"? I agree with such good suggestions above. Probably too much for you to even think about. Hang in there. Great that there's family participation in 24/7 care. Have there been others in your family that had the same situation?

If I was in your shoes, here is what I would do this week:

1.One suggestion I have is for sure, be really honest with you brother. Could he come visit for a couple of days to assess her and the situation for himself? Then you two could make some decisions as well as you not being in the dark on how things are getting paid, etc.

2. Call a local hospice and have them come evaluate her. It is free and you are not obligated to work with them afterward even if she qualifies. You don't need her permission nor your family's. Just do it. They will have good advice and resources for you, including how to test her for a treatable issue instead of letting it run wild if that is what's at the heart of her worst behaviors. 

If she qualifies for their care assistance, they can provide home visits by a nurse 1x weekly, I think a convo with nutritionist, social worker, aides to assist a few times a week with bathing, changing linens, etc Incontinence supplies and body care products, pads, wipes, etc would all be provided. Delivered to you and free. Also meds if you all decide to go that route for her peace of mind and physical comfort as this disease progresses.

3. There are more absorbent adult diapers that also open on both sides as you mentioned, so there is not the pull up mess.

MamaBear937

Thank you all for all the information. I wish I did know a good PCP, but I don't. When I had my gallbladder issue, I tried to go to a PCP so I could schedule my care around my work schedule. I told her everything I'd been experiencing, everything I had researched, and that I was pretty sure it was my gallbladder. She wouldn't take me seriously and told me there was no way it could be my gallbladder. I eventually ended up in the ER, where the doctors told me I had a gallstone so large, it had me 100% blocked, right at the junction between the gallbladder and the pancreas; and if I hadn't gone in when I did, it very well could have killed me. Needless to say, I would not recommend the PCP I went to, to anyone.

But, it sounds like there may be options for getting assessments and tests done at home. My brother is planning a trip out next month, so I'll probably see what he thinks at that time, and see what the lawyer said regarding the financial/insurance aspect. I believe he said he has a virtual meeting with one sometime this month.

Anyway, thanks again to everyone for all the helpful information.

Jane Smith

Mama Bear, if nobody has said, welcome to the boards. 

Please accept my condolences on the loss of your father. 

Many members here have had a situation where the parent who was the main caretaker for the other parent with dementia, died unexpectedly or suddenly. Sometimes only then is it apparent what the situation with the parent with dementia really is. (The statistics about how many caregivers of people with dementia who die before the person with dementia, are appalling, maybe as high as 45%. I’m so sorry this happened to your family. ). This can be a big shock coming on top of the death of a parent. I cannot imagine the stress and worry you must be feeling. 

Some families are able to work out a rotation of care so that the person with dementia is able to stay in their home. Others are not.  And some persons with dementia are not safe at home, even with 24/7 caregivers, or have other medical issues that need management. Every family has to do what is best for them and make the best decision they can at the time, with the information they have.  Not every person is suited for a facility and not every facility is right for every person. 

I would recommend, if you have not read it already, Understanding the Dementia Experience by Jennifer Ghent Fuller. You can read it online here http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf Or buy it on Amazon. I also suggest a book called the 36 Hour Day.  

The Alzheimer’s Association has a LOT of online support groups that could be helpful for you and your family. You can attend virtually or by phone. It can be helpful to talk to other folks in similar situations. 

I hope you are able to get the legal/financial/paperwork situation straightened out and obtain power of attorney, or guardianship. A good elder law attorney can help get the job done. 

You have got a lot on your plate and I wish you the best. Diabetes and dementia is a tough combination, plus your father’s death, and distance, and everything else. 

A very smart person here taught me that “care needs drive the decision making,” which helped me when I had to make tough decisions for my mother. 

Wishing you and your family all the best at this difficult time. 

MamaBear937

Jane Smith wrote:

Mama Bear, if nobody has said, welcome to the boards.  Please accept my condolences on the loss of your father.  Many members here have had a situation where the parent who was the main caretaker for the other parent with dementia, died unexpectedly or suddenly. Sometimes only then is it apparent what the situation with the parent with dementia really is. (The statistics about how many caregivers of people with dementia who die before the person with dementia, are appalling, maybe as high as 45%. I’m so sorry this happened to your family. ). This can be a big shock coming on top of the death of a parent. I cannot imagine the stress and worry you must be feeling. 

Some families are able to work out a rotation of care so that the person with dementia is able to stay in their home. Others are not.  And some persons with dementia are not safe at home, even with 24/7 caregivers, or have other medical issues that need management. Every family has to do what is best for them and make the best decision they can at the time, with the information they have.  Not every person is suited for a facility and not every facility is right for every person.  I would recommend, if you have not read it already, Understanding the Dementia Experience by Jennifer Ghent Fuller. You can read it online here http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf Or buy it on Amazon. I also suggest a book called the 36 Hour Day.   The Alzheimer’s Association has a LOT of online support groups that could be helpful for you and your family. You can attend virtually or by phone. It can be helpful to talk to other folks in similar situations.  I hope you are able to get the legal/financial/paperwork situation straightened out and obtain power of attorney, or guardianship. A good elder law attorney can help get the job done.  You have got a lot on your plate and I wish you the best. Diabetes and dementia is a tough combination, plus your father’s death, and distance, and everything else. 

A very smart person here taught me that “care needs drive the decision making,” which helped me when I had to make tough decisions for my mother. 

Wishing you and your family all the best at this difficult time. 

Thank you so much for those helpful resources! I was well aware of her condition before he passed, as I would still come over frequently and make sure all was well. My dad was still learning how to be a caretaker and needed some guidance, especially when it came to cooking. But it does seem as if his death compounded the issue for her. Either that, or he had just learned how to deal with her particularities, and the rest of us are clueless.

Anyway, my brother will be making a trip out in about 3-4 weeks, and I'm hoping we can clear up some of the insurance and financial side. I think that will help a lot. There's only so much I can afford to do for her, so we really need all that cleared up.

Again, I really appreciate those resources and the kind words.