Am I making things worse?

Daughter80

Hi all. I am an overachiever by nature and I know that about myself. I took my mom to a neurologist today. It was recommended that she get exercise and do mental type activities. While we were out my mom also mentioned wanting to get a clock she could see to help her know the day, time etc. My mom and aunt live together and my aunt is her primary caregiver. When we got back, mom asked me to share information because she is hopeful my aunt will listen to me since she feels nothing she asks for will happen, so I shared what the doctor recommended, and suggested a clock I saw on Amazon. When I was at the apartment I added some memory/ brain games to my mom’s kindle, discussed how to get weekly exercise for her and then tried to set up my mom’s Alexa as an alternative to the clock that my aunt basically said no to. My aunt got upset with me saying that I confuse my mom and when I leave she will just talk about random pieces from our conversation. So, I totally can see this, but I am only doing what I see as helpful. I don’t want to make anyone’s life any more difficult. Should I change how I interact with my mom? Should I talk about less? Should I hold back? Am I making things worse for her? I do understand the condition and have spent weeks pouring over material to learn as much as I can. I don’t expect her to remember all I am saying. I am more than willing to do things differently but I don’t quite understand how to “not” talk to my mom. Or talk about less. Will this even really matter?

 Sorry. She has a formal diagnosis of dementia/ Alzheimer’s from 4 months ago and today the neurologist said it was mild. Her MMSE score was 27. She did well with that,  (I was actually surprised at how well she did) but she can get lost easily, struggles to do things like zip a coat, open a door, she repeats herself in conversations, and we pretty much never leave her alone at this point. I would say she is more moderate.

Marta

You have told us about you, but nothing about your Mom. She has seen a neuro. Do you have a diagnosis as yet?  What stage is your mother in, according to your studies?

Daughter80

Sorry. She has a formal diagnosis of dementia/ Alzheimer’s from 4 months ago and today the neurologist said it was mild. Her MMSE score was 27. She did well with that,  (I was actually surprised at how well she did) but she can get lost easily, struggles to do things like zip a coat, open a door, she repeats herself in conversations, and we pretty much never leave her alone at this point. I would say she is more moderate.

Iris L.

Daughter80 wrote:

. My aunt got upset with me saying that I confuse my mom and when I leave she will just talk about random pieces from our conversation. So, I totally can see this, but I am only doing what I see as helpful. I don’t want to make anyone’s life any more difficult. Should I change how I interact with my mom? Should I talk about less? Should I hold back? Am I making things worse for her? 

I would suggest you communicate more with your aunt to see why she became upset. PWDs talk about random pieces of conversation no matter what you say or do.  What is your aunt talking about?  IMO, she sounds like she does not understand Alzheimer's Disease, and also that she may be in caregiver burnout.  I think you should prepare a long term care plan for your mom.  The members have many threads on how to communicate with a PWD.

Iris L.

Daughter80

I agree that she may be in burnout. Maybe we can get a counselor in? I wonder if I can contact Alzheimer’s Association and find help. My aunt is refusing to accept help.  I wanted home care to start a few weeks ago. This is all so new and so fast I want to give it time, but mom is miserable unless I have her. We get along fine which is funny since that wasn’t exactly our norm at all.

Emily 123

Found the older thread that reviews the situation:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147559119

Have a heart to heart with your aunt, and ask her those questions.  You both want what is best for your mom.  To give your aunt the benefit of the doubt, consider if what your mom is telling you is being filtered through her Alzheimer's and anosognosia.  I would say that, if your mom is in stage 5 as you suspect, she will not be likely to initiate any activities herself.   Your  plan to have an aide visit daily is a good one, and it should be time to start that soon, so that should help keep your mom engaged.      

harshedbuzz

Daughter80 wrote:

Hi all. I am an overachiever by nature and I know that about myself.

Self-knowledge is a powerful thing. But so is accepting that there are some aspects of this situation that you can not change- the progressive nature of dementia, what other people think and do and the lifetime baggage between sisters.

 I took my mom to a neurologist today. It was recommended that she get exercise and do mental type activities.

Meh. I get the sense this suggestion was made because there isn't doodley-squat they could offer that would actually help your mom. I suspect my aunt's PCP told my uncle that same because we found an entire 12' long closet filled with NYT crosswords in various states of completion after uncle died and auntie was found sitting in a cold dark house with no idea why the cable was out. Just before he died (without sharing suspicions of her cognitive shift), they'd taken to mall walking which was very uncharacteristic and inconvenient given that they lived 18 miles out on a peninsula in the middle of the Casco Bay. Auntie walked and did puzzles and still the disease progressed. 

While we were out my mom also mentioned wanting to get a clock she could see to help her know the day, time etc.

There is a digital clock widely available that shows day, date and time. The 4-1-1 from mom's support group is that there is a limited window in which this is helpful for some PWD. We tried one when dad was testing where your mom is now, it seemed kind of abstract for him. He could identify the numbers when he saw them, but they had little meaning. And TBH, I think the repetitive questions were more a bid for attention/connection than an actual need to know the time. 

 My mom and aunt live together and my aunt is her primary caregiver. When we got back, mom asked me to share information because she is hopeful my aunt will listen to me since she feels nothing she asks for will happen, so I shared what the doctor recommended, and suggested a clock I saw on Amazon.

Maybe the better choice would have been to just order it to your home, deliver/install it at hers when it arrives and leave her sister out of it. The way you describe the interaction sounds almost as if you expect sis to "make it so". And there is nothing a hands-on caregiver loathes more than a drive-by "suggestion".

When I was at the apartment I added some memory/ brain games to my mom’s kindle, discussed how to get weekly exercise for her and then tried to set up my mom’s Alexa as an alternative to the clock that my aunt basically said no to.

My next suggestion is one where you need to follow the money. Who is funding this enterprise? Is this a 50/50 split of rent? Or is it mom's apartment with sis living "grace and favor" for her caregiving services? Or is she paid cash money?

I mean, if mom's there out of the goodness of sis's heart and it's as much her apartment, she gets to say no to your clock decor suggestion in the shared part of the house. If mom has her own bedroom, perhaps you could install one there. Or maybe tabletop on a side table next to mom's chair. 

If mom is in a position to bring in help, she's an equal partner in the household and she can afford it, you could arrange for a companion to take mom out for Silver Sneakers or hire a trainer to come to the house and do exercises with her. One of my son's old friends from high school has created a kind of side hustle where he has a handful of elderly clients with whom he works out. He's a sweet kid who has minimal credentials and is reasonable in terms of fees. A local gym or care.com could help you find a similar soul where you live.

My aunt got upset with me saying that I confuse my mom and when I leave she will just talk about random pieces from our conversation. So, I totally can see this, but I am only doing what I see as helpful. I don’t want to make anyone’s life any more difficult. Should I change how I interact with my mom? Should I talk about less? Should I hold back? Am I making things worse for her? I do understand the condition and have spent weeks pouring over material to learn as much as I can. I don’t expect her to remember all I am saying. I am more than willing to do things differently but I don’t quite understand how to “not” talk to my mom. Or talk about less. Will this even really matter?

TBH, I wonder if this arrangement isn't a big part of the struggle you are having. Burnout could be a possibility, but I just wonder if this is a situation where sis isn't cut out to be a caregiver. Not everyone is. I wonder if your mom might be much better served by a MCF or a professional caregivers. However well sis is making sure mom is fed, clean and safe, she doesn't seem to be able to engage your mom who seems to crave attention. Maybe this is just a misalignment of personality- an introvert caring for a social butterfly.

Or maybe there's a darker side to this- baggage from childhood and parents coloring care. I watched this a bit with my mom and her sisters. Mom's the baby of a large family- 8 girls and 1 boy- and used to being told what to do. This trait also informed her choice of husband. There's was a strong family ethos of "taking care of one's own"- mom moved away, but my other cousins were raised in an almost communal manner. Mom's next older sibling- Aunt P- is the one who likes to be in charge- I noticed that she was very different as a caregiver to Aunt C who was a sweet and doting older sister than she was to Aunt N who was never very nice and created a lot of family drama. I also noted that in the period right after dad's diagnosis (which came late and was partly self-inflicted ARD) my mom acted as if she finally had the upper hand and was uncharacteristically unkind- a situation on which I called her even though I could totally understand the impulse. 

 Sorry. She has a formal diagnosis of dementia/ Alzheimer’s from 4 months ago and today the neurologist said it was mild. Her MMSE score was 27. She did well with that,  (I was actually surprised at how well she did) but she can get lost easily, struggles to do things like zip a coat, open a door, she repeats herself in conversations, and we pretty much never leave her alone at this point. I would say she is more moderate.

You know better. Your aunt, putting in 24/7, probably knows best. Was your mom a bright individual? My dad was able to get MMSE scores in that range until about 9 months before he died from aspiration pneumonia. The man could do serial subtraction like there was a paycheck involved but at home he was trying to change channels with his flip phone and couldn't recall if my sister was alive or not. The last time dad did a MMSE, his geri-psych remarked on how well he did and dad bragged on himself the entire way down the hall and elevator to the valet stand where he promptly got into some random little old lady's car when I turned my back to turn in my ticket. In the interest of fairness, the other car was a Honda and the same color as his, but it was a sedan, and we had a minivan.  Unlike my husband who doesn't pay attention to cars, dad was a motorhead who did. 

Good luck going forward.

HB

dayn2nite2

If I have 1 suggestion it's this - please do not burden your aunt with the technology (the clock, the Kindle, the Alexa).  Your mother doesn't understand why she can't remember the day or know around what time it is and thinks the clock will help her.  It won't.  You "setting up Alexa" is only adding one more chore to your aunt's list (what time is it?  My Kindle is broken, fix it.  I want to play my brain games).  

Puzzles and games will not help her.  Alexa cannot help her if she can't remember how to use it.  You could have clocks all over the house and she would still ask what time and what day it is.

Your mother is cognitively impaired.  This isn't about memory.  Her brain is broken.  Please accept that and keep that in mind when you think of another technological item that will "help" her because it will only burden your aunt, who is the primary caregiver.

Unknown By Man

Personally I think the alexia is worth a try,  my mother loves her alexia and it has been a life saver for her. Though I have more or less made my mom's apartment a smart house so to speak. The lights, microwave, refrigerator, tv, the door, cell phone etc. . . and she loves it. She treats alexia kinda like a roommate. She asks her for jokes, weather, suggestions on what to eat, the time of day, she sets reminders.

My mom has notes placed around the house that reminds her the basic command alexia blank. Tech can help and it is worth a try if it does not work so be it but you really lose nothing but a few bucks in trying. 

Sure it can be annoying when my mom calls me through alexia a few dozen times a day, but the pros far out way the cons in my opinion well in my mothers case. I say it might be helpful, though I can see how it would annoy someone cause sometimes you do have to reset it cause the wifi goes out, but you can do that remotely. 

LevisHouse

It sounds like you are committed to doing the best for your mother and making sure she gets the medical care she needs as her disease progresses. My response is really only based on my own experience being the caregiver for my aunt. 

I have found that people mean well and make all sorts of suggestions about how to help my aunt. One friend even bought my aunt a new laptop because my aunt wanted one so badly after hers crashed. But I'm the one left trying to help my aunt use it, which is about as likely as seeing a fish walk on land. We go over and over and over it and she no longer has the ability to manage the steps. More often than not I want to throw it through the window because it creates more stress for both of us than it is worth.

The best thing that people do for me is stop in, visit, and sit with her so that I can get away to do whatever I want. One day it meant going to one of my favorite restaurants to have a long and luxurious lunch. Another day it was a long hike and another day it was so that I could go out with a friend. And another friend sat and visited with my aunt while I did other things around the house - it was amazingly helpful!

My point is that the doctors can make recommendations (I agree with the other person who suggested that the doc offered this as an alternative to nothing) - but your aunt is the one who has to deal with the day-to-day of it and she needs a break. If she doesn't want full-time care, would she take a day of respite? Can you arrange for others to come in for a visit? You don't mention how far away you live, but could you be there at least once a week to give your aunt a day off? How about a cleaning person for them? Caretaking a person with dementia is exhausting and LONELY. It is also stressful and bad for one's health (watch Teepa Snow video for this info). Please consider your aunt's well-being in all of this - she is carrying an amazingly heavy load.

Daughter80

Thanks for the suggestions and taking the time to read and reply. I live only 15 minutes away and get my mom almost every other day to give my aunt a break and get my mom out. I do agree that the clock won’t help. She loved her Alexa and I can set it up in her room. She is easy to keep happy at this point and just craves attention and conversation. They are definitely opposite in personalities. I’m doing all I can to help my mom and aunt and respect all my aunt is doing. She hasn’t budged on anything I see as a need for mom. Care, exercise, socialization…Socialization is a need for her. I know nothing will fix this. I just know that quality of life matters. She can sit in an apartment all day and be safe and miserable. They fight constantly. They share everything equally. I think it is just too much for my aunt honestly. I think mom would be happier in AL or MC.

dayn2nite2

Daughter80 wrote:

Thanks for the suggestions and taking the time to read and reply. I live only 15 minutes away and get my mom almost every other day to give my aunt a break and get my mom out. I do agree that the clock won’t help. She loved her Alexa and I can set it up in her room. She is easy to keep happy at this point and just craves attention and conversation. They are definitely opposite in personalities. I’m doing all I can to help my mom and aunt and respect all my aunt is doing. She hasn’t budged on anything I see as a need for mom. Care, exercise, socialization…Socialization is a need for her. I know nothing will fix this. I just know that quality of life matters. She can sit in an apartment all day and be safe and miserable. They fight constantly. They share everything equally. I think it is just too much for my aunt honestly. I think mom would be happier in AL or MC.

If that's the way you feel, then place her.  She is your mother, right?  It's a win-win, you have a facility to handle the care and she gets out from underneath the burden (and I do use that word purposely, no matter how much you love someone it is a burden to be responsible for someone with dementia).

My point with the technology and all these "ideas" about how to help her is this - I am on my 2nd go-round with caring for someone with dementia.  When someone decides my LO "needs" something it is usually a gadget and guess what?  That person is never around when my LO can't work it or use it.  I look at all this stuff as bullsh*t and I am a tech-savvy person.  Do I want to be woken up at 2 am to soothe the distress of someone upset because Alexa won't talk to them.  NO.  You might be 15 minutes away but it feels like 1000 miles in the middle of the night when I need to be alert during the day.

I went through all that with my mother and all the "helpful" people and I am not tolerating it this time around.  If you want her to have Alexa, keep it at your house in my opinion.  

What's stopping you from seeking placement for your mother.

jfkoc

My question would be what are you talking about that is confusing your mother.

My suggestion would be to take your mother out when you visit...a meal...a walk...a trip to a store/grocer. 

Stay  long enough so that your aunt gets a real break to do something she would like to do. Maybe stay and fix dinner with them acouple of nights each week.

Daughter80

I definitely take her out for a while whenever I do. Usually we are gone from 2-5 hours. I did ask and the example was that I told my mom that maybe I could join her for the movie at the independent living facility where they stay. Apparently my mom remembered this at lunch, hopped up and asked the people working there if I could join her. This stressed my aunt out since she said she didn’t know where my mom was going. It feels like anything aside from meals and basic hygiene is too much for my aunt.  

As far as the Alexa. Some have said it was wonderful others a nuisance. I am 100% open to trying and if it is a pain my aunt only need to let me know and I will say it is broken and whisk it away. Communication is key. And quality of life for all is top priority. 

And putting my mom in AL or MC….I’m not against it at all. We are just one month into this adventure so me reaching out and learning is how I am trying to sort through everything and learn what would be best. Mom is young too. 67 and cost is definitely scary. We have a certain amount to work with and making it last is important. I was hopeful that the two of them in independent living (All cleaning, food prep, trash pick up, events, shuttle,…) things like this are provided ) along with home care would stretch the money for a bit and give her more time but with needed care. 

Again, thank you all for all of your advice. Hugs and blessings to you all as this is a side of life that you have no idea about until you’re in it. 

Iris L.

Daughter80 wrote:

   They fight constantly. They share everything equally. I think it is just too much for my aunt honestly. 

This is the crux of the matter.  There is no way  a PWD can "share everything equally" with another person.  You are acting as if they are Golden Girl roommates.  It sounds as if this was presented as a roommate situation at first, but it has become work aka a burden for your aunt.  Caregiving is not sharing equally.  I don't blame your aunt for becoming upset.

There is no reason to fight with a PWD.  The PWD will always function in a diminished capacity.  Your aunt refuses to accept this.  This is bordering on elder abuse, IMO.

Iris

Quilting brings calm

If your mom truly functioned as high as the score on that test, she wouldn’t be considered to have dementia.  She might not even be considered to have mild cognitive decline.  My mom scored 23 and her official diagnosis is mild cognitive decline. That is stage 3 of the  7 stage chart. 

Mild dementia is stage 4 and the high score cut off is 23.  My mom behaves  like stage 4, and it sounds like your mom does too or maybe even stage 5.  My parents moved from an RV to an independent living community just before a the medical crisis that exposed their situation. It was not the right level for my parents. Once the medical crisis was resolved, we moved them into assisted living. Which is the right level.  There is no way a stage 5( moderate dementia)  person should be living in independent living because they aren’t independent, 

I think your Mom is not able to function in independent living without your aunt doing caregiving that an assisted living facility provides. This is causing your aunt grief and resentment because she is not able to enjoy the amenities of independent living. She might even be afraid they will be asked to leave. 

The independent living facility my parents tried was basically an over 55 complex with weekly housekeeping, some  laundry done  in your apartment by the housekeeper. A club house and community center. Apartments, townhouses. Houses. Allowed dining in the assisted living dining hall across the street for a fee each meal. Stove in the apartment for cooking your own meals. Residents are capable of coming and going, traveling etc on their own that just didn’t want to maintain a house or deal with lawns, snow removal etc. 

Assisted living -  apartment in a building with three meals in the dining hall, beautician, Activities. Laundry and housekeeping. 24/7 staffing with an LPN coordinating medical care on weekdays. Medication management. No stove  in the apartment.  A call button pendant for assistance/ including putting the cable tv back to the right channel. Transport to local doctor appointments if needed. The staff meets all their daily needs, while you manage the finances, bills, sundries, snack foods, etc. 

Which of these levels does your mom need if your aunt can’t be her 24/7 caregiver?  That’s where you mom needs to be. 

As to your original question, give your mom simple short instructions. One at a time,  talk about only one of the  doctors suggestions in a visit. Because too much info confuses them. 

Jo C.

You have received much good input from other Members and you are a very caring daughter.  You have been with this dementia diagnosis for only four to five months and are still on the first rung of the learning ladder which is where we all start.   It has also only been a few months since your mother and aunt moved to be near you.  That move is a HUGE dynamic in their lives and it would take much more time to adapt to those changes and be comfortable for both of those ladies.  NOTE:  Not only do they have a period of adaptation, you also have a period of adaptation.  We all do in such changes.

One big question not yet answered:  Your aunt moved away from what had been her familiar living situation to come out of state to be near you and care for her sister . . .

Question:  What is the financial situation for your aunt?   Is she able to pay for her own living arrangements for herself if you place your mother?  Did you have any financial arrangements to assist your aunt for her living with and caring for your mother?  Can she afford to pay for her own living accommodations if your mother is not there? This is huge in the scheme of things and we must acknowedge that your aunt may be feeling perhaps a bit insecure and unsettled to at least a degree while she is trying hard to adapt to all and sundry that has landed in her lap and changed her world too.
 
 There are two elderly woment to be considered here.  One; your mother, the other; your aunt.  It as said, is also a huge move and change for your aunt who may be quietly filled with uncertainties and concerns not only regarding her sister, but also very much for herself which would be normal under the circumstances.    Hopefully, she will not be shortchanged in whatever transpires going forward.  As said, she left her place of comfort to move out of state which may have sounded good at the time, but which may not have evolved to be as anyone thought.

I also feel that it would be helpful to learn more about dementia and the dynamics and how/why they happen as they do.  Nothing is going to be the same and there is NO perfection in any of this - just the best we an do under the circumstances with the challenges at hand.  And of course, the dementia will advance on its own timetable.

 In getting a better picture of the "whys," I am providing a link to an excellent writing that is very illuminating and can be printed off.  Perhaps if you feel she would benefit from reading it, your aunt may find it interesting. It is written by Jennifer Ghent- Fuller; "Understanding The Dementia Experience."  Here is the link:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Please do continue to come and talk about what is happening. We are all here in support of one another and that now includes you too.

Also; the Alzheimer's Assn. has a 24 Hour Helpline 365 days a year that can be reached at, (800) 272-3900. If you call, ask to be transferred to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, have much information and can often assist us with our problem solving.

Sending warm thoughts and best wishes you way from one daughter to another,

J.

Daughter80

Thanks for support and advice. I definitely am not acting like they are golden girl roommates. This was a decision made by a group of family members with the knowledge that my aunt would be caring for my mom. My brother and I actually advised against it and tried to get them separate apartments in IL/AL. Financially it is a stress on my aunt. She could afford IL and mom AL but it would be tight and I know this stresses her.  By them being equal I meant in a literal financial sense. Someone asked that earlier. They split the bills equally. That’s all. My aunt pays all the bills but half of the amount comes from each of their accounts. My aunt has so so so much on her plate. She is ten years older than my mom and physically struggles to walk at times. It a lot for me as well. I now feel responsibility for my elderly mom and aunt. My mom is young. Just 67.  I also have teenage daughters. Two small businesses and a husband. I am reaching out for support and knowledge and definitely appreciate all of the time and support.  I have read all of the links attached. I think that, more than anything, we need counseling or something. I called my local AA and left a message today. We have to be able to communicate and we have to all know we have each other’s back and can pick up what needs to be picked up or let go of things we may believe are important because this is only going to get harder and I know some things, my aunt knows others and my mom is still capable of making some  decisions and needs to be a part of this. Thank you all again for the support.

Iris L.

You can receive excellent advice from a Care Consultant at the Helpline.  You may also consider hiring a geriatric care manager.  This is also a specialist in caregiving and family dynamics who could visit in the home, talk with everyone concerned, and assess the situation and make recommendations.  She may also be able to take certain chores off your plate, or suggest ways of delegating.  You have a lot on your plate as it is.

There is a website for the national gcm office, although they have changed their name.  Or the Care Consultant may be able to suggest a couple of names in your area.

I identify somewhat with your aunt.  I volunteered to help an elderly neighbor, newly widowed.   She needed more than casual neighborly attention and I became upset.  I actually posted about it.  The members gave me good advice.  

Iris

Quilting brings calm

Daughter 

I read your latest comment, explains quite a bit.  I feel for you in this.  

Might I suggest that you arrange for your aunt to pay Less than Half of all the bills, in recognition of her caregiving. A roommate with no additional responsibilities pays half. Caregivers should get paid.  Some caregivers here actually get paid a little through Medicare or Medicaid for services provided. Others  live in their loved ones homes at a discount.  If not money, then give her gift cards for clothing, gas, etc. 

I also think you might have figured out some of the issue because of your aunts age and own limitations. She may feel that she bit off more than she can chew. Or maybe she regrets moving away from her own friends 

King Boo

Daughter 80-

Having dementia does not necessarily mean Mom is unable to execute a Durable Power of Attorney, naming you or your brother as proxy.

If  you do not have this document, get it.  Or you will be powerless to legally act as this situation goes down.  It has the potential to go badly, if multiple other family members are holding the power as you indicate.

What are the dynamics that this was a 'family decision' and not her children's?  Your aunt and your Mom have entirely different care needs - a a huge red flag waving at me is the questionable judgement of the family members that would put an elderly women who cannot walk in charge of a person with dementia's care.  

Daughter80

Thanks so much for the advice on seeking a care consultant or geriatric care manager. Definitely something to look into. I also love the idea of my mom paying more of the rent to pay for my aunt’s help.

I wish advice only sounded helpful and not judgmental. The family members that made decisions were my mom, aunt, brother and myself. My aunt is able to walk but recently hurt her hip and struggles a bit. She wants to care for her sister. They have no other living relatives and this has all happened very quickly and we are doing the best we can with the knowledge we have. I saw mom in May and she was totally independent except not being able to drive. Then 5 months later we are moving her across the country and not leaving her alone ever as she was getting lost looking for the bathroom in her own apartment. The learning curve is huge and the time we have had from diagnosis till now was literally only 4 months. 

Again, I am so very appreciative to all of the nonjudgmental advice. Kindness goes a long way. Thank you. 

King Boo

 Quote "This was a decision made by a group of family members with the knowledge that my aunt would be caring for my mom. My brother and I actually advised against it and tried to get them separate apartments in IL/AL."

 I was working off this statement, which expresses your concern .  Some of us have been 'through the storm' and therefore are more succinct, a little more 'been there, done that.'  Sorry that was felt unkind.  

 Not all the caveats posters point out will come to pass, but are food for thought. And 4 months in people are still reeling from the shock of diagnosis. 

The MMSE is a screening tool only, don't rely on it too  much to determine the stage. 

 It will all come together in time.

Daughter80

Thank you King Boo for taking the time to respond.  The statement about "questionable judgement of family members that would put an elderly woman who cannot walk in charge of a person with dementia's care." was what hurt.  I guess it is just hard to share all of the information on a website vs in a real conversation.  There are so many moving parts and we definitely are doing the best with what we have.  Learning as we go and I have found this site to be a WONDERFUL resource as I have used so much of the advice on here already.  I totally accept your apology and I apologize for being unclear.  I am so sorry for the "storm" you and all of the PWD and their family members have gone through.  

I totally agree and definitely don't think the MMSE score is valid because my mom is not even close to "normal" with her cognitive skills.   

From all of the advice I have received I have made phone calls, set up meetings, read, and have a nice plan in place to hopefully get us on the same page and make sure we are all taken care of.  Again, thank you all.  

Iris L.

Caregiving for a PWD is a moving target.  The only constant in dementia is that things will change.

Iris 

Iris L.

IMO, the best step anyone can take is to join this group and follow the advice, guidance and support of the members here.  No one knows what to do at first.  Professionals often are of little help.  You're doing a great job, Daughter80.  I say this because you have a lot going on, yet you take the time and the initiative to come here and read and adapt your strategy.   We all have to do this.  Take some deep breaths and keep going!  Best wishes!

Iris

Daughter80

Thanks so much Iris. This group really is a blessing.

Cynbar

Daughter, I think part of the problem here is that no one knows what it's like to care for a person with dementia until they've done it. This has been my life for several years and it is exhausting, frustrating, even soul crushing at times. You say that your mother is easy to care for but just needs a lot of attention and conversation ----- that doesn't qualify as easy. It's manageable when you spend a couple hours with your mom, but not on an all day, every day basis. None of you knew how this would work out until you tried it. As mentioned above, not everyone is cut out to be a caregiver, and your aunt is older with health issues of her own. Honestly, it doesn't seem this arrangement is working out for anyone. You say that they yell at each other a lot, your mother is unhappy and so is your aunt. If you want your mom to have more exercise and socialization, you are going to have to arrange it, your aunt has shown she's not going to do it. Hire a paid companion (and just tell your aunt this is how it's going to be) or look for a daycare situation. But I really think it's time to work on placement for her. If money is a concern, find a place that would let her stay there on Medicaid when it runs out. But remember one thing --- a person with dementia is constantly changing and the plans have to change too. There is no shame in finding that the plan you all made together isn't working out, that happens all the time. Just say to yourself "We did what we thought was best at the time but now we have to pivot and think of something else." The ground is often shifting under your feet, that is just part of the dementia journey. Good luck, we can tell how much love and effort you are putting into this.

Daughter80

Hi Cynbar. I definitely didn’t mean my mom was easy to care for. Only easy to keep happy at this point. She is so happy when social. Whether this is having a conversation or even just sitting in a room with people. She enjoys just listening and watching. She is still very articulate. She is not easy to care for. I don’t know how my aunt does it. I worry so much for her. That’s why I’m making sure to take my mom as much as humanly possible.  I’m planning to meet with just my aunt and talk about everything I have learned and how I worry for them both. I absolutely think we need care started or a different living situation. All of us can only do so much. Thanks for the validation. We have done our best, we are learning so much and permission to change or even make mistakes is so needed for anyone going through all of this. I won’t get it perfect, no one will. Prayers for everyone going through this to give themselves the grace to do their best and accept that their best will not be perfect.

dayn2nite2

So if you just went ahead and got some kind of home care in - would your aunt fire them or would she tolerate them and complain?  If the latter, go ahead and tell her you're just going to do this and see what happens.  That way, if there is someone coming in a couple of times a week to spend time with your mother and your aunt still doesn't participate in the activities or social groups at the facility, that's on her.

Big problem I can see is your aunt dying before your mother because our bodies keep a tally on the stress we've been under.  You can tell her you're concerned for her health and frame the additional home companion or care like that.

It's also occurred to me that your aunt may be depressed because she is in a new environment without her longtime friends.  Has she been assessed for that?  Depression can be exhibited as irritation, impatience, etc.  It's not always crying and mopey behavior.

"Happy" is okay for now, but in the future you will never achieve "happy."  You may be able to get to "content" and that will have to be good enough, because rarely does the person with dementia agree with the raising of care level for them.

Jo C.

Thank you for the additional information; it does indeed give a much better picture of what is happening.   It is good that you will be speaking to your aunt, letting her know you love and care about her and understand her position.  I can well imagine the big move into such a different setting away from everything she knew has been difficult for her including the new designation as caregiver which has not worked out nor been easy.   Cynbar has written a very good Post which doees bring some good thoughts forward.

Wishing you success in plans going forward with sincere hopes that all works out best for both your mother and your aunt.

J.