In over my head

Hope65

My mom had been 'ok' - moderate vascular dementia, but functioning reasonably well with help.  Unfortunate family conflict has  destroyed pur support network, so I'm trying my best to keep things going.  Tonight, forvthe first time, mom became very agitated & paranoid about her medication, including accusing me of hiding it from her, and saying that ive been treating her like a 7 year old child.  Neither are true.  She was crying, pacing, so upset - never saw her like this before, and Im so sad.  She will not accept help from an outside caregiver.  Nor will she visit any memory care facilities.  We live in northern nj.  24/7 home care is financially manageable, fortunately.  However, while im okay with therapeutic fibs, i dont know how to use them.  And, I don't know where to start on terms of finding good home care.  Im scared, worried,  and in way over my head.

Rick4407

Hello Hope, welcome to the club nobody wants to be in.   Avoid conflict, your Mother has a broken brain.  Fibs basically tell the LO what they want to hear, but with their goal delayed.  "Tomorrow we can go see your Mom.  The car is broken so we'll go tomorrow, etc."  Be enthusiastic and supportive, I want to do that too.   You would be very wise to read lots of posts here, most will have a bit of wisdom in the responses.   

You need to get your LO to see a neurologist or geri psych with experience in dementia.  Those appointments are almost universally difficult to get on short notice.  The usual fib is that her insurance requires requires a check up.   A daily caregiver is there to help you, not her.  

Avoid agitation, if she want to take pills put some TicTacs (small hard candys) in a pill bottle for her.  There are other choices, Altoids makes "Smalls" that are also sugarless and look like pills.   

Finding a a good caregiver is challenging.  Obviously look for someone who states they have experience with dementia.  It may take 2-3 tries to find one that "clicks" with your loved one.  

Caring for a LO with dementia is just about the opposite of traditional mental health, rather than encouraging behavior change by reframing reality, it's allowing the alternate reality to continue.  I think of the song "Tomorrow" from Annie.  

Read lots of threads here!  Good luck, Rick    

         

Crushed

Dear Hope

 Welcome
Are all the legal affairs in order ?    (im a lawyer and tend to harp on that issue )

Minor issue.  Are you a son or a daughter? There are generally issues both ways but hey are not the same .  My mother had vascular dementia and my wife has Alzheimer's 

We can also  give you lots help on household safety  
 
you should also ask for help on the general forum There more "children" caretakers there  
But welcome 

M1

Hope, glad you found us though sorry you need us.

One suggestion:  don't take her to visit memory care facilities, if you need to pick one out, you should be the one to visit and just do it.  She is beyond having rational conversations about any of this.  I know you want her to "buy in" to it, but that's a false hope.  If that's the best solution (and it may be if she's going to drive paid caregivers off), you may need to go forward with it without ever telling her it's going to happen.  Hard to get your head around, but that's the experience for many here.

Crushed is completely right about the legal issues, I hope you already have power of attorney, especially if there is family conflict.  Whoever has power of attorney has the ultimate say here.

Ed1937

Hope65 wrote:

Tonight, forvthe first time, mom became very agitated & paranoid about her medication, including accusing me of hiding it from her

Hi Hope. Welcome. Anytime symptoms happen suddenly like that, there's a decent chance there is a UTI to blame. She should be checked out with a sample taken, and a culture run on it. If it is a UTI or other infection, when it is cleared up, she will likely return to baseline. Older people can have no typical symptoms with a UTI, and are called silent UTIs.

A CELA (certified elder law attorney) should be seen ASAP if you haven't done so already.

I think a good start to finding good caregiving help would be to attend a local support group, at least once or twice. You can ask for referrals from others there. 

Rescue mom

A strong second to what’s been said; Rick and M1 both made good point.

The fib is basically, you agree with what she says. You don’t argue. Agree, and delay. She wants to go home (which no longer exists), you say, ok we’ll go when the rain stops/when it’s daylight/ when we finish our meal. Just something to delay. Then distract her, and/or she’ll forget what you said, so same thing works tomorrow.

Another example: she says you or somebody stole her (whatever) because she can’t find it.  You say “I’m sorry, that’s awful, I’ll help you look for it. Or “I hate when that happens, I’ll bring you another one,”  or “yes, I took it, I’m so sorry I didn’t tell you. I’ll bring it back/replace it,” whatever.

She says you took or hid her meds. You say “I’m sorry, I must have moved them. I’ll get you more.”

Obviously you may often be blamed, or have to take blame, for things you did not do, and that requires a thick skin. You have to remember, their brain is broken. They are not functioning like normal healthy people do. They can’t fix or change themselves, so you have to “change” to deal with them. It’s hard.

That leads us to M1, who is right. You cannot discuss a facility, or home help, with her any more. She is no longer able to think though such things. You have to take action, and do it. Much like dealing with a toddler, who needs rules and help when they don’t want it.

You can hire and bring in home helpers with dementia experience (which is essential IMO) but as said, it may take a few hires to find the right “fit.”  They are accustomed to dealing with unwilling PWDs. It may also take a few visits before your mom accepts aide. You and aide just have to ride it out.

storycrafter

As Ed said above, visit your local Alz support group for the best referrals and general info about your area. Personal references and experience from those who live there are the best. You'll also glean many ideas for coping and supporting your LO.

Also, you can connect with your city's Senior Services, and/or local Area Agency on Aging. They can be founts of information and support regarding local resources. Often there is even a staff/volunteer social worker or someone who will generously consult with you and your specific situation.

Perhaps you haven't needed therapeutic fiblets until now? If you keep in mind your priority is providing reassurance and comfort for your mother, you'll naturally learn how to use them as needed. If you have a specific question she's asking or an issue that you're stumped by, just come here and ask. So many helpful, practical suggestions you'll find here.

Your mother is so fortunate to have you. The key now, is to build your own support network/team as you develop hers. It will take time and patience, but you can do it. Keep reaching out until you find what you need. Wishing you the best....

Hope65

Hi and TY for taking the time to share so thoughtfully -- from this uncharted territory, it felt good to connect with someone who has been/is in my shoes.   Fortunately, my mom just started with a new geriatric specialist, who referred us for a neuropsych eval, mri, driving eval, and hearing test.  We're waiting on the neuropsych results and the MRI is scheduled for later this week.  

I'm still struggling heavily with a caregiver, but will try with the "insurance requires it" approach.  Totally understand that it's for me and not for her. Here's the prob:  mom is in decent physical health, and generally cooperates when reminded to do things -- it's me that's going crazy b/c I haven't any opportunities for respite and she either cannot or does not (probably both) recognize that she (we) needs help.  (I think this is called "anosognosia"?) She wants me to go home b/c she doesn't want to burden me.  Obv I can't/won't do that.  I have a consult scheduled with a geriatric care manager tomorrow morning to learn more about how she may be able to help with increasing needs.  

I also have a friend in the area who is aware of some good caregivers -- the challenge will be for my mom to accept.  I'm so scared that she will refuse all, and how those implications will impact me.  It's impossible to sustain what I'm currently doing. My father (mom's husband of 62 years) recently passed away unexpectedly in June, so in addition to the exacerbation of mom's sx, I am grieving his loss (trying to, anyway), am now working with our Estates -attorney on estate-related issues, paying bills, grocery shopping (etc), and am also balancing responsibilities associated with Durable Power of Attorney and Health Care Proxy.  

I will post on the general caregiver forum to hopefully connect with other adult children caregivers.

To be continued.  Thank you again, Rick.

Hope65

Hi "Crushed" -- Connecting with another who is/has been in my shoes helps so much.  Thank you for taking the time to respond to my post.'

Re: legal affairs: To complicate things, my father (mom's husband of 62 yrs) recently passed in June, so in terms of his (their) their estate, things are progressing.  Dad was also a lawyer and had been working with an good estates-atty for years on his will.  The fortunate thing is that's in decent shape.  The unfortunate thing is that I have basically taken over his life and am now DPOA and HCP.  

Can you share more about what you mean specifically with regard to legal affairs?  I'd warmly welcome any suggestions, guidance, and any "harping" on related issues that you would offer.

To be continued and thank you for your kindness...

Hope65

Thanks, Ed, for your suggestions.  I'd really love to attend a local support group -- it'd be great for me to connect and build a resource library. Problem is I can't b/c I'm the only caregiver currently and don't feel secure in leaving mom for an extended period of time.

Re:  UTI -- you're right about that.  Recently I took mom to the ER for cardiac issue and while there, they identified a UTI.  Antibiotics prescribed.  While things are relatively better on that front, the looming caregiving issues remain so heavy -- on top of grieving the recent and unexpected loss of my dad (mom's husband of 62 years) and assuming DPOA and HCP all at the same time. Lots of other things too.

Trying really hard to accept this new reality -- 

Thank you a million times for taking the time to write, and please share any other suggestions and guidance you have. I warmly welcome everything.

Hope65

Rescue mom wrote:

That leads us to M1, who is right. You cannot discuss a facility, or home help, with her any more. She is no longer able to think though such things. You have to take action, and do it. Much like dealing with a toddler, who needs rules and help when they don’t want it.

You can hire and bring in home helpers with dementia experience (which is essential IMO) but as said, it may take a few hires to find the right “fit.”  They are accustomed to dealing with unwilling PWDs. It may also take a few visits before your mom accepts aide. You and aide just have to ride it out. f

I heard this loud and clear , though it totally scares the &$!#@! out of me.  As I'm not from the area, I feel like a fish out of water when it comes to finding reputable and trustworthy home helpers.  

In addition to mom, I also dealing with the unexpected recent death of my father (mom's husband of 62 years) in June, which as you might imagine, has exacerbated her sx and daily needs significantly.  He did everything for her.  If it was "only" the dementia, I'd be in a relatively better place, but I am also grieving, had to give up my career (for now), and haven't been home (mine) since he passed.  I'm doing my best to meet mom's needs, manage estate related things (with trusted lawyer), grieve, and other very weighty concerns.   I'm so aware that I can't sustain this -- and that's what's impacting me most.  While my own therapist is helpful, it's not enough for all of the above. 

As you say, building my own support team is now my priority.  Whatever other suggestions, leads, advise, etc you have to offer, I will warmly welcome.  Thank you, Rescue Mom. 

Jella417

Re: local support group. My DH is in ES of AD and can still function independently with most things. I have just learned about fiblets. Do I tell him where I am going? Do I lie? He is aware enough to wonder where I’ve gone. Keep in mind we have a family location app so he can look and see where I am if he wants to. (This will be a life line for determining his location as the disease progresses, if he remembers to take his phone...) I’ve been putting of going to support groups for fear he’ll be angry about it due to the anosognosia (sp?). That is why I’ve started here.