Need Input from those who have been there

Challenging Dementia

Hello to all.  This is my first post.  I have read a lot of the comments on the message board and I can pretty much relate to most of them.  My mom started having memory issues about 5 years ago and I did insist she see neurology.  Her father's siblings have a significant history (14 out of 19 children), dying of Alzheimers.  She has always had the fear of it happening to her, so she would never admit when it did.  She was living along 3 states away from me.  She is alone and divorced.  I have a younger special needs brother that she was having for a weekend about once a month.

Needless to say, things deteriorate so quickly.  As I investigated, she was bouncing checks.  Took a loan out against her paid off house.  Going to the casino gambling.  Getting lost driving.  Getting angry anytime there were questions.  I finally was able to get on her bank account and see everything.  It was a mess.  She refused to move closer to us.  She forgot that my little brother was at the house one weekend and was calling looking for him, so we had to hire assistants to stay there and help.  She was not taking her BP medication (I don't have high blood pressure) at 180/100, even though she has been on the medication for years.  She was on Aricept and Namenda.  Her neurologist kept telling her she should not drive and could not live alone, but she refused.  Thank goodness, I was able to get her to sign Durable Power of Attorney 3 years ago prior to her demise.

Fast forward, from Thanksgiving 2020 to January 2021, my mom fell 5 times at home.  She has depression and had been crying and lonely, on antidepressants, but also kept getting into the rum.  I was in route to see her when the neighbor called.  She was found on her den floor.  Probably been there 36 hours.  Broken hip.  Urinated all over the floor.  Hindsight, probably better for us.  She went from home to hospital to rehab to now in assisted living closer to my other brother, who has kids and grandkids to spend time with her.

I am a healthcare professional and I know about treating patients.  Alzheimer's and dementia are different.  She is too independent for Memory Care, but needs more assistance than Assisted Living.  I get daily phone calls, I want to go home.  I can take care of myself.  I don't have any money here or any credit cards.  Where is my car!!!!  She keeps her bags packed because every day she is leaving.  The screaming at me and my brother for doing this to her.  COVID has not helped.

I know we did the correct thing for her safety, but the daily guilt triggered by the phone calls are horrible.  We have not established a neurologist in her new place.  She is on anti depressants, on memory medication.  I don't know if we need to look for another assisted living or get better medication regimen to assist with the agitation?

You guys have been there and have so much knowledge.  I know this is not easy, but would love any advice as to how to get through this.

Thanks in advance

wyoming daughter

oh gosh - i'm so sorry you are going thru this.  

Right now the hurdle is getting her to accept where she is, right? and she will eventually, she may not like it, but...  In the meantime, you need to find a workaround when you talk to her.  When she says she would like to go home, maybe say something like, I know you do mom,  let her know you hear and understand her, then take control of the conversation, try to redirect.  Have something in mind before you visit with her that you are going to redirect her with, something that she will want to hear and/or talk about.   

We have a bird feeder outside Mom's window, and when the visit sounds like its going south, I try shifting her attention to the birds, "oh look, Mom did you just see that bird fly right into the other bird?"  It usually works...anything to shift her focus...if you can find a way to calm her, and get her off the "going home, take care of myself", it will subside eventually.  Hopefully she can find a friend where she is, but I know covid has made that very difficult.  Grandkids are a great distraction, too.

And you don't have to answer every phone call - you can call her back when you are prepared.  I even wrote my Mom a letter, explaining all her questions, in a very loving way, it didn't do her any good, but it made me feel better....

Hope this helps, it just so hard, hang in there.    There will be others posting - and everyone has helpful suggestions.   It's been a great place to find help and vent.  And read as much as you can, personally, I think Teepa Snow is amazing....she has great videos out there for every stage.  Take care.

Challenging Dementia

Thank you for your input.  I agree and try to redirect. She loves gardening and we bring plants and pots to occupy her.  The anger and hurtful words are tough.  If I don't get enough sleep or had a bad day at work, it is worse.  It is nice to have permission to not answer every call.  Thank you.

Sunshine days

I feel for you, I have been there too and this is probably one of the hardest situations you will face on this terrible journey.... but much of the blame that she directs toward you can hopefully be deflected if you tell her that "the doctors" said she cannot live alone anymore particularly after her devastating fall....it is undoubtedly true and I'm sure they would back you up if it ever came to it, but chances are good she would just accept that at face value and not even approach them on it. Clearly she does need the assistance she is getting and that way you are no longer the bad guy and her anger and frustration will diminish. This always worked with my mom, if the doctor said it was the thing to do then she was ok with that....Good luck and God bless !

Emily 123

Hello,

Well, even if you do decide to move her she still needs to have her agitation and depression addressed now, so why not line up a provider to see her? Her being anxious can't be good for her (or you). Adjusting her meds may help her feel less anxiety, and you might re-assess the need for a move. Or at least it will buy you some breathing room to not feel so pressured by guilt, and any decision-making would be less rushed.  Many AL's have doctors on staff or who visit, which makes things easy. You can always switch if they aren't working out. 

It sounds like you need a break from the phone calls. As suggested, call back when you're ready to, and divert as needed. The urge to second guess the choices you've had to make is going to be persistent.  Just hang in there and give it time . Your mom has no short term memory, so everything is going to seem new to her every day for a while--and when it does, she's going to try to leave.  Perfectly natural, especially if she has asognosia.  My fiblet to my mom was that she had looked at and liked the facility we chose. We had done drive-bys, but when she started saying she had picked it out,  I ran with it, because yes, initially she didn't care for it for weeks because 'everyone's so old'.  She's 92.

harshedbuzz

Care needs at her worst dictate the level of care needed. Given her agitation, she probably needs a higher level of care found in a MCF where staff have dementia informed training and activities in which she can participate and feel successful.

When my family put my aunt in AL they didn't realize how much scaffolding her daughter had been providing at home before the move. Auntie crashed and burned. She was already depressed and angry, but being left alone and ignored by other residents exacerbated her mood and level of acting out. 

In your shoes, I would have her seen by a geriatric psychiatrist and start looking for a MCF. I can appreciate that it's really hard to think of your mom living in the context of a facility that has residents who are further along in the disease process, but a good place will try to pair her up with people more at her level. 

HB

aalfano

Do you believe that someone who still knows where she is, and that she lives somewhere else, should have her home sold without her permission?  This is a terrible question, but I have to ask someone.

harshedbuzz

aalfano wrote:

Do you believe that someone who still knows where she is, and that she lives somewhere else, should have her home sold without her permission?  This is a terrible question, but I have to ask someone.

In many cases? Yes.

Just because a person still recognizes their home and expresses a preference to remain there does not mean that they have the IADLs, executive function and reasoning skills to remain there safely.

If the person needs 24/7 care to protect them

-from being robbed blind by scammers, fake charities and deadbeat nephews. 

-from burning the house down or flooding it

-from wandering off and not being found until too late

-from overdosing on or skipping important medications

and they do not have a large cooperative family who see aging in place as a goal worth working towards, or a paid up LTC policy that'll buy 24/7 caregiving or nearly unlimited assets, than yes.

Safety first.

Suzzin

CD, adding my voice and my sympathy. My mom is much like yours (without the hip fracture)--still reasonably aware but with no clue how much help she needs. She packs, she rages, she invents entire scenarios where "everyone is coming for dinner, I worked all to day make dinner for 19 people and now no one is coming, they are having a party somewhere else and I'm just left out". After a lifetime of trying to appease and make her happy, in the last year I have learned that I can say, "I'm sorry you're having a bad day, I love you and I'll talk to you later" and hang up. She won't remember why she was mad, she won't remember that I ducked out of the phone call. Her car is "parked out front, let's go take a look at it". Either she doesn't want to see it, or she sees some random car and thinks it's hers. I know in my heart that she is in a place that is providing the best care for her, better than if we hired 24/7 carers in her other home, better than if she were living in our home. It's tough, but you're doing the right thing.

MiddleChild_Six

My first post as well, and your story you shared is a mirror practically of what we are going through with my mother. Last month she fell...again..."took care of herself" to the point of falling asleep on her stairs (safe, right!?!), not able to eat, not able to eat, not able to hardly talk all within 24hrs. Wound her up in nursing facility diagnosed with fractured foot (thank goodness) which has allowed her foot to mend of course and her meds to be managed, and to eat and drink properly. But now she is "on the mend" and all better and ready to go home...screaming at everyone. 

It's been a roller coaster, but one thing we were able to "fix" and get a grip on were her medicines. We feel that this is the core to the evil, but problem is if she goes home again (well...not if....but when) we will be back to square one. 

I'm not sure I really answered your question, and I'm not one that has the experience just yet...but definitely one that can share your pain and let you know you're not alone. 

Challenging Dementia

Thank you for your response. My mom is one of the most stubborn people I have ever known.  She will never except that she has an issue.  But, the approval to not answer the phone from most of those on this forum is a comfort.  Being a health care professional, I feel that I have to fix it.  I know there is no fix.  We are working on medications, which will help.

Challenging Dementia

I agree.  I believe the answer is finding the right medication cocktail.  Not so easy when just moved her to another state.  We are looking for the correct neurologist or geriatrician to assist in management.  Since my brother and I seem to be triggers, I do not know if it is better to just not see her or to try to see her more???  She is very strong willed and has always been independent.  We can not let her have a cell phone because last time she called 911 telling them she was being held against her will.  Such a sad progressive disease.  Thanks for your input.

Challenging Dementia

Thanks for the input.  Right now, she is too independent for MC physically.  Her AL has a lock down MC that she can transition to, but she would have no independence.  She still smokes (yes, another issue) and she has for 60 years.  Not going to stop now, but she still has the freedom to go out and smoke.  She does this without issues.  Is it her memory that consistently gets her into trouble, for now.

Emily 123

If you feel that you are triggers then it would probably be best to back off on visits until she gets more settled.  What do the staff and admins at her facility think? 

It may be that she isn't being stubborn about some things--the lack of awareness is part of the disease. There's no ability to make them see things your way because their day is being filtered through a broken brain. The input they receive seems like everyday reality to them, and so they act based on that. Trying to reason with her can kick off agitation and anger since you're arguing about something that is absolutely real to her.

Have you had a chance to look through this article?  It was very helpful to me in understanding my mom's behaviors.  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Good luck!

cpyle619

Our moms sound similar. Mine fell over a year ago in her IL apartment and broke her pelvis. After 7 weeks in the Skilled Nursing section, she returned to her IL apartment against the recommendations of the board. Still, they acquiesced. Fast forward a year, and physically, she's doing very well, but the memory part is worse, so, off to MC she went. I'm making light of it, but a lot of thought and debate went into the decision. It's been difficult for her being so capable physically, not having the freedom to do or go anywhere independently, but it is definitely where she needs to be. She speaks well (especially when she's angry at me), but no conversation sticks. I argued for AL as well, but it definitely was the right decision to go to MC, because she would have had to move and adjust again quite quickly.   Medications will help, but it will take time. I've learned not to answer the phone as quickly as I used to and let her leave a message because usually she's wanting to rage at me about something.  Sending you a big hug!

Challenging Dementia

Thank you for all of the support and advice.  I feel like we are all in this dreaded disease together.

SusanB-dil

First remember - you are not alone! I was very glad when I found alzconnected! Yup - we are in this thing together.  One main thing I have learned in the short time I've signed in, is about anosognosia (thank you 'Iris') This describes my mom-in-law precisely, and it sounds like you are also dealing with it.  Basically, it is the characteristic that the person is not in denial that there is a problem, but truly sees that there is "no problem"! despite obvious evidence to the contrary.

I agree with the other posts that are saying to really get your legal 'ducks in a row'.  we found out about a niece who was destroying MIL finances... to the point that she "took" a little beach-house via a quitclaim, and was working on getting her main house (among other things).   DH stepped in and we are now her principal caregivers. She doesn't see where she needs anyone. Her meds are keeping her stable, and we cannot leave her alone - partially because she wouldn't take them if we did. Several reasons she cannot be alone, but that's a 'biggie'.

Challenging Dementia

Yes, you are correct.  This certainly describes my mom.  I am so thankful that I did get all legal necessities prior to things getting this bad.  I am currently reading "The 36-hour Day" Guide to support for caregivers.  I am currently looking for memory care places closer to me because my brother has been the closest and the assisted living is not providing enough attention.

So much.  All the time. Decisions. Decisions.

I thank everyone for letting me know that I am not alone.

Sueb116

My partner wants to continue to drive and has moderate Dementia. He has gotten lost 

a few months ago and has not driven since. How did you handle nit driving if he is adamant 

to do so? Thank you for suggestions.

Wilted Daughter

This post was last week and you may have found all the answers that you need, but I'll add my 2 cents. 

My mom fell hit her head hard on the kitchen floor right in front of me on 8/10/21. She was scheduled for a pacemaker the next day and stayed in the hospital, accute rehab, short term rehab for almost a month. Before she came home I had to declutter the house move her bedroom downstairs (worst than moving to another state). Her attitude towards me is confrontational, blaming, yelling, demanding etc. She can't live alone nor fully take care of herself and the house is too big for me to manage long-term. 

You have to do what you think is best (safety/healthy/financially) for her and you (if you are the primary caregiver, POA, Health Care Proxy, etc.). If you don't anticipate her moving back home and need the money to support, then you make a decision based on the current need. Houses are sold all the time to free up monies to support new living environments/arrangements. If you can get a live-in caregiver (family member) to stay with her that might be a feasible path to follow. Remember that where ever she goes her money follows (Pension/SSA/Savings). FYI: In order for you to sell the house your name must be on the deed or you must have legal authority in the state where the house is located. 

I'm going through this house dilemma myself and have all the necessary authority, but lack the guts.

Sounds like she's in a safe place and everything else will play out in time. Exhale and don't let the bad behaviors shake you up to make bad decisions. 

Wilted Daughter

I see this was posted last week. Hopefully you have found a solution by now. The long: My mom fell in the kitchen hit her head right in front of me on 8/10/21 and had a pacemaker inserted the next day. She stayed in the hospital, rehab for almost a month and just returned home 2 weeks ago. My mother cannot live alone nor completely take care of herself. I'm regularly faced with  untruths, blame, and hostility.

The short: You have to do what you believe is best (safety, health, and financially) for her and you (if you are the primary caregiver...). If whatever decision you are making is in her best interest it's the right thing to do. Decisions are fluid and case by case.  If someone (family member) can live with her to help her stay in the home for a while longer this may give you more time to find a long-term solution to selling the house, finding her another living environment. Doctors can address behaviors with medicines in a facility or at home. I'm going through the house dilemma myself it's a tough decision to make but made all the time to support new living arrangement (downsizing). 

Don't let the behavioral issues shake you up into making bad decisions. Exhale and get some rest...sounds like she's in a safe place for now. 

Challenging Dementia

Thanks for the support.  I know it is the correct decision.  No one is able to live with her, unfortunately, so she had to go to assisted living.  However, we note that the staffing at assisted living does not give her brain and memory the attention it needs.  They also started changing her anti-depressant medications.  Now, we have increased outbursts.

So, I am trying to find a non lock down memory care facility where she can smoke.  Been doing it for 60 years, she is not going to stop now.  At a memory care, I think I can get a physician through the memory care facility to better manage her medication and provide more appropriate memory care.

One thing that has been beneficial for me has been the book "The 36 hour day" 7th edition.  Very good resource.

loveskitties

Challenging Dementia,

You may not have to give up on a lock-down facility in order for her to continue smoking...but it may be limited.

My granddaughter works at an MC and they have person who is allowed "x" cigs per day.  Someone takes person to the enclosed courtyard for the smoke.

I doubt you will find any MC which will allow the patient to be in control of matches or lighter.