Caregiver 101 - What you wish you were told?

Reeni3

Early this year 2021, my elderly aunt with dementia moved from out-of-state to live with me in my one bedroom apartment. Without getting into the family drama of how this all unfolded, for varying reasons I am caring for her. She has no children and was a widow who remarried. As for many, 2020 was a defining year, and after 17 years, she is in the process of getting a divorce. She is also in denial of her condition. As for me,  I am on a leave of absence from school to focus on this adjustment in our lives. I am a student and I know how to dive into info, resources, websites etc. and do the doing. So there are things already in motion - her health insurance is getting transferred to in-state, all address changes have happened, she has a pro bono lawyer for the divorce, new-patient appointments being made etc. I also realize we all enter this journey from different angles, spaces, contexts, emotions etc. So knowing I tend to jump into "act now- feel later" mode, my curiosity is probably from what is not in research, books, websites, etc. Hence, why I joined this group.

My question to the forum is: in hindsight, what do you wish you were told or knew in the first few months of caregiving to set yourself up for stability? strength? endurance? self-care? Maybe what is 1-3 things you wish you did that you didn't do early 1) for your loved one and/or 2) for you?

Even if you have no response, I appreciate anyone reading this and respect you all for being here and in this journey.

harshedbuzz

Hello and welcome-

From a caregiver perspective, I feel understanding dementia as more than just a faulty memory is key. The changes in executive function, critical thinking, and mood can be more important. To that end, I like this short download.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Another key concept around which it is helpful to wrap one's mind is anosognosia. You say your aunt in "in denial of her condition", she likely has anosognosia- the inability of some people with dementia to be able to recognize there has been a cognitive shift that has impaired their memory and thinking. In their minds, they are the same capable person they've always been which means best practices dictate not mentioning the "D" word or suggesting they can't do something as a result. 

Specific to your situation, I don't know that a pro bono attorney is the safest option here. Divorce is possible with dementia, but she will need special consideration to be sure she is well represented and mentally capable of legal decisions. She may need to be appointed a guardian for the process. Division of marital assets may be impacted by dementia, so it is important this is part of the equation. You should also see an elder law attorney (www.nelf.org) to get paperwork in place for you to be her POA and such and to qualify her for Medicaid down the road should she not have nearly unlimited assets. 

Good luck

HB

May flowers

Welcome to the board, but sorry for the reasons you are here. It’s good that you are being proactive in planning, many of us find ourselves in reaction mode. Also, flexibility helps - things seem to come up we didn’t expect or plan for.

Harshedbuzz already touched on POA, I would be working on that right away as money management can become an issue early for LOs with dementia. Sounds like you are already doing the other first thing which is doctor’s appointments.

One thing I wish we had done earlier is take inventory of medications and figure out what my LOs were taking and why. We moved my in-laws nearby in 2017 and my MIL was on 30 different medications from 10 different doctors (turned out she had cancer that none of her doctors had diagnosed, most of the meds were unnecessary after the cancer was treated). My FIL was on several meds that were unnecessary and made his dementia symptoms worse. 

It’s pretty common for an elderly person to have seen several docs and the docs don’t always communicate - so they can even be taking more than one of the same kind of med!

You haven’t said what stage she is at, but we realized my FIL was worse than expected when he moved here (he was only 10 minutes away). So in hindsight, we would have prepared for him to be further along than we thought. For example, we didn’t know he was already prone to wandering at night and getting lost. I would have proofed my house with chimes on the doors and an alarm mat, etc. 

You cannot rely on her own assessment of what she can do, so be prepared to supervise/take over giving her meds and other daily tasks.

Another thing we should have done is decluttered my FIL’s house after my MIL died. It was too much stuff and stressful for him. When we moved him here, we kept everything very simple and uncluttered, put signs on doors and with names of clothes on drawers. In the living room, we had one table with just his stuff on it. We came up with a routine which made him feel safe once he adjusted. 

I would be lining up respite now, as well. Assume she cannot be alone and have folks willing to sit with her when you go out.

The biggest thing for me was sleep - I could handle the daily tasks better if I got a good night’s sleep. You said you have a 1 bedroom apartment - are you sharing the bedroom? 

You can still take some classes online with some colleges, maybe you can continue with a class here and there after things get settled in.  

Hope that helps!

jyssilly

I'm new to this board as well and appreciate all I've read so far!  There are so many things I am realizing are part of the disease/dementia as opposed to just my dad's personality.

In any case, I'm in a bit of a different situation because my siblings and I are remote and my mom is local, but one thing we found helpful was to have a Google spreadsheet that has all of my dad's information - a list of all the doctors, pharmacy, emails, phone numbers, contact info etc.  We also keep a separate tab that just has his full medication list, which is not that long, but at least is in a central place, can easily be copy/pasted into other communications, printed to be taken to visits etc.

Secondly, we all share a family account on LastPass - which is a password management program.  This helps us keep tabs on my dad's accounts in the multiple patient portals where he has visits, numbers like insurance card numbers/photos, SSN, access to other online accounts that we need shared access to.

Sending strength as I feel like that is definitely what I am needing lately!  And reassurance that you're the best you can in doing everything you can and that's all that anyone can do.

jfkoc

...to remember to smell the roses...

abc123

Hi Reenie and Welcome! 

Wow! Your final year! That’s a lot to deal with and be a caregiver. Because your education is extremely important I think you should start lining up sitters, day care programs, etc. Make that a priority so you can keep up with your studies. 

As a caregiver my biggest problem has always been remembering my LO has a broken brain. They are different now and that effects EVERYTHING. You have gotten some great feedback already. There are many wise and caring people here with years of experience as caregivers. HB is one of them! You will have to stay on top of everything for your Aunt because she is not able. Attend every possible doctor appointment. It’s also important to treat our PWD with respect and kindness. Even though their brain is damaged they are still an adult. Sometimes I speak to my Mom like a child and it hurts her feelings. I’m sorry if this seems jumbled, I’m fixing Mom a snack, doing laundry, letting the dogs out and replying to you! I wish you the best!

Ginsamae

My MIL moved in with us in April 2019 and I wish I would have been more prepared for the wild swings in her abilities. Some days she seemed (and still does on occasion) so "normal" - oriented to time, place, etc, and then some days she's in a completely different universe. 

I also wish DH and I had been more prepared for her obstinate personality. She was always so deferential to everyone and now she's like a stubborn 2 year old. This has caused us to not be able to get any legal documents taken care of and now that it's become obvious to everyone that she has mental deficiencies we don't believe we could have her sign anything that would be legally enforceable. 

Last, I also wish we had known about the seeming plateaus in abilities. She held at one level for a while and then suddenly lost ground, then stabilized for a bit, then dropped again.

Cynbar

Come often here to these forums, for support and advice and education. It has been invaluable to me because almost everyone in my regular life just doesn't get how hard this is. Read posts even if you don't think they pertain to you because a person with dementia is ever changing. But don't allow yourself to be afraid or discouraged. Yes, this journey can be tough at times --- but not everything you read about will happen to you and your aunt. It's like reading all the possible side effects of a medication, it can be terrifying. Take it one step at a time and try not to worry about the future.

Jane Smith

Things I wish I’d known /known sooner before taking over care of my mom

1) anything at all about dementia.  I have spent the last six years learning everything I can about dementia, because I knew nothing.  It’s a steep learning curve.

2)memory loss is not the main symptom-personality changes, loss of executive function, apathy, sleep disturbances, delusions (false, fixed beliefs), loss of orientation to time and place, sudden rages, all kinds of symptoms are part of dementia  

3) they have cognitive impairment-basically a broken brain-and you must get educated and adjust your perspective and expectations, or else you are setting everyone up for way more pain and suffering than is necessary.  (Would you ask someone with a broken leg to run a marathon?  No, because it would be impossible and cruel.  So don’t ask someone with dementia to do the cognitive equivalent, which could be as “simple” as go get dressed, or pay the bills, or eat your lunch by yourself.)

5). It’s not just Alzheimer’s.  There are many types of dementia and they can present differently and need different medications/treatment approaches 

6) anosognosia. Google it. She’s not in denial. Her brain cannot process that there is anything wrong with her.  A very difficult concept for a person with a healthy brain to grasp. 

7) guilt gets you nowhere. Save guilt for when you deliberately take action that will cause harm (rob a bank, shoot someone, run over a dog with your car on purpose).  Instead, feel regret. Regret in turn is made up of a lot of other emotions, like anger, sadness, fear, disappointment, confusion.  

8) anticipatory or ambiguous grief is a Thing

9) get help for yourself now. Support groups, a therapist, antidepressants, help with whatever you can outsource. Dementia will suck all your time and energy and demand more. Don’t try to go it alone. That route will not end well. Also, take care of your health. Something like 40% or more of caregivers die before the person with dementia does.  Get help now and never turn down an offer of assistance. 

10) care needs drive the decision making. Safety and health come first. Once you make a decision, move forward and don’t look back. You don’t have time or energy for it. 

Wishing you the best of luck. 

Fairyland

Jane Smith I like your style.

GothicGremlin

Like Jane Smith, I wish I had known anything at all about dementia.  I knew nothing walking in the door, and the learning curve is steep. It was overwhelming for me at first. During the first few months I read everything I could get my hands on. Understanding The Dementia Experience that harshedbuzz pointed to is an excellent resource.

Others have covered the POA and other legal issues, so I won't get into those, but those legal issues are many, and often time sensitive. Make sure to give yourself time to do them all.

I also didn't think early on about putting together my team - legal, medical, trusted family and friends, social workers, a therapist -- over time I put that together and all of those people have helped to keep me sane.  And know that some friends and family are just not going to be there for you or your aunt. They're going to disappear or interfere. Ignore them.

This last thing -- I'm not sure if it's generally applicable, or if it's only applicable to me and my sister (she's the one with AD), but I do not argue with her, even when she's wrong (which is often). Instead, I validate her, even if it borders on a lie. I do this because then she knows she's being heard, and being heard is hugely important to her. It makes her feel like she matters even though she has Alzheimer's.  Even when she forgets what's been said, she remembers the feeling, and that feeling is trust. I've managed to avoid several meltdowns that way. 

MattyBoy

SUBLINGUAL LIQUID MELATONIN !!!!

MMichelleS

• I would like to highlight Gothicgremlin’s idea of not arguing making them feel validated. This is huge in my life. My mother is a very challenging person. Nothing has ever been wrong with her EVER! Now that her ability to reason is impaired the only thing she has left is feelings. If I get angry, I pay for it. If she goes to bed scared and angry, she wakes up scared and angry. If I remain calm, she is more likely to remain calm. Behaving in a loving manner works the best. Mood and tone makes all the difference in the world. Early on I read that they are always scared. That helped me, but knowing that my mood plays such a huge part of her being calm has made all the difference in the world! Peace and blessings. You do need to finish your education.  Find out what benefits you have in your county/State. Find a daycare.  Take care of your life. They idea of putting on your mask first, then helping those in your care really applies. At times it seems impossible yet it is always necessary. Sometimes you just have to ignore. 

Reeni3

Wow. That is an understatement. And not “scared” wow. But the “ok, we’re in this” and “thank you thank you” for getting rid of blind spots I was not aware of and highlighting what idk that idk. This is extremely helpful.

 

Hi, May flowers, yes, money management and prescriptions – got it. Passwords: since she is not good with the computer, she didn’t create her passwords very helpful and validating in the reminder. And per jyssilly yes, lists. names, contacts, medical, legal, bank etc. got it. And GothicGremlin I guess this is the start of the team you mentioned. And my documenting is growing as I started to keep a log of what she eats, when she showers, what her blood pressure is, when I think she is ‘sundowning?’ And very pertinent and timely stuff harshedbuzz was explicit about – and the one I was most nervous and scared about – POA stuff, I have a legal consultation appointment tomorrow to get that started. And abc123 I had an appointment with a social worker today and they mentioned sitters and so I gotta get the Medicaid thing squared away. Jane Smith & harshedbuzz – Anosognosia. Thank you for putting this on my radar and in my vocabulary. And Ginsamae, GothicGremlin, MMichelleS touched on the thing I had felt the most incompetent at – her mood swings, personality shifts. I do recognize the novice in me and the arguing thing. I defaulted to controlling the situation when her move here happened so fast, and bc of all the other stuff I’m going to be in control of on her behalf. But I did switch gears last month – first, to not commenting on everything that she says. Then getting rid of rationalizing if it wasn’t working. I am in negotiating stage which seems to be working right now – with loving and patient tones. And to abc123, Jane Smith pointing out the broken brain perspective – you made tangible and mentally visible for me what seemed incongruent, indirect and sometimes invisible. So the education thing and what my future looks like - abc123, MMichelleS and Cynbar – I’ve occupied my day, mind, energy so much to my aunt, I have been sad about pausing school. And so that it is still within my sights, I forced myself during Spring Break to apply for a fellowship for next year. And I found out I got it – full tuition coverage and a stipend. So I am meeting with an advisor tomorrow to talk out my situation and find a way to meet the stipulations of the funding for the coming year. We’ll see how it goes. In between crying, deep breathing jfkoc, I did take photographs of different color trees and leaves I saw when I was walking today. And MattyBoy I am currently hesitant to take a sleep aid – probably a rookie mentality at the moment to be on alert for her. But sublingual liquid melatonin is now on my list.

 

Thank you all for responding in the middle of what you are all juggling. Thank you for all the guidance. Although I am not sure how I can support you, I am here and welcome to anyone that reaches out.

LoriJim

Thank you for the two links, going to look around at these for even more information.