Helping my mom cope with being a Dementia Caregiver.

Ktufarie

I am hoping this place will bring in some great advice from people who have experience or to at least make me feel more at ease with the entire situation…

My grandmother has early stage Alzheimers and my mother is her only child and therefore her sole caretaker. I live in Minnesota and they both live in Florida. 

Right before my grandmother was officially diagnosed, in 2017 she made the rash decision to sell all her belongings and her home and move back to Puerto Rico where she is from. We knew this was a bad idea because her short term memory was getting worse, but we knew we couldn’t do anything to stop her. She’s always been a very headstrong woman. She survived through hurricane Maria that following year living by herself in her hometown, but she would call us and express that she’d see things that weren’t actually there. We knew we had to get her back home. At the time she was easily able to be convinced to come back to Florida with my mom because she was lonely. But as soon as she got back to Florida, she kept insisting she needed to go back to her house in PR. We finally got the official Alzheimers diagnosis, and my mom took the steps to become her medical beneficiary and her legal guardian. During this whole process, my grandmother became increasingly frustrated because she felt like she was being held against her will, and took out her anger on my mother, occasionally resulting in physical violence towards my mother. Due to memory care being so expensive, we cannot afford to have her live anywhere else. This has been the most difficult for my mother, but what seems to be a bigger issue is how my mom reacts to my grandmothers evolving behavior due to the dementia. My mom takes everything my grandmother says to her so personally, and gets very offended and hurt. This causes my mom to lose patience easily and lash out to her outbursts. I’ve tried explaining to my mom that this is not grandmas fault, but it’s the dementia causing this behavior. I explained that to alleviate heartache we all need to learn not to take it personally because this is the nature of the disease. My mom refuses to accept that and also lashes out at me because she accuses me of not understanding what she goes through because I don’t deal with it everyday. 

Since I am now expecting a baby, my mother and grandmother are staying with me for the next four weeks to help me settle into parenthood. My grandma is experiencing episodes of anger and confusion since this is not her normal place or her normal routine. I have been very patient with her and have sat and talked her through some of her episodes. But my mom is not managing well and almost makes it worse when I try to defuse the situation. Im at a loss of how I should approach this. More specifically how I should approach my mom to get her to understand how harmful and unhelpful her reactions are without upsetting her or hurting her feelings. At the least someone tell me they sympathize with me lol 

M1

Congratulations on your imminent motherhood! Though my heart quails for you, coping with a newborn and a grandmother was dementia simultaneously is going to be a challenge. And your mother is definitely going to be caught in the middle. Is there any other family who could step in and perhaps take grandma home to a familiar place while you and your mom bond with this baby? If not, maybe you and your husband/partner need to uninvite them until a better time. I know that's not what you asked, but it's the first thing that comes to mind. You and your nuclear family deserve this priority right now IMHO.

Welcome to the forum, there are many wise and kind folks here. Keep us posted how it goes and congratulations again.

abc123

I do sympathize with you, completely! If your mom isn't willing to learn about dementia and learn how to communicate with a person with dementia(PWD), she should make other living arrangements for her mother. Things will only get harder. Just about every caregiver here will tell you that WE had to change OUR behavior in order to make things better. Your mom has got to realize that her mother now has a damaged brain and is not responsible, its not her fault she has this awful disease. There is nothing nice or easy about any of this. I'm so sorry for you. I like M1's idea of finding a relative to take care of grandma while you are bonding with your baby. Is that possible? If I were you, I would be very careful about her being in the house with a newborn. I hope something can be worked out so you can enjoy this special time in your life. Good luck.

loveskitties

Congratulation on soon becoming a mother.  I hope that you and your husband will be able to have the time together with the new one without difficulties from mom or grandma.

You might have your mother call and talk to the Alzheimer's hot line and ask to speak to a counselor.  It is a free service and they may be able to help your mother get a better handle on how to deal with grandma.  The number is 1-800-272-3900.  They are specifically trained to help guide caregivers.

Wishing you and your family the best.

SusanB-dil

Hi Ktufarie - welcome to 'here'!   I have been glad I found this forum. a lot of good advice and knowing 'not alone' has meant a lot.

Congratulations on soon-to-be baby!  I have to agree with what was already put out there for you, in that the baby and baby-time will need to come first.  If this is already upsetting to your grandma, will you and your mom be able to handle her around the baby, and will grandma be even more upset?

Would your mom be open to at least checking out some of the advice in this forum?  abc123 is right, we have to change our point-of-view to meet their view of the world, and it seems you already do have somewhat of a handle on that, but mom may not.

sandwichone123

You have a lot going on. A lot of times, moms have trouble taking advice from their children and it's easier for them to hear it from someone else. There are a lot of resources on the internet, but one source that many people find relatable is Teepa Snow. She makes a lot of videos and you can just do a search for her, but here is a link.

https://teepasnow.com/resources/about-dementia/

I suggest you don't mention this to your mother, but perhaps watch some yourself. They can be quite humorous at times. At some point you may walk away when your mom is around and see if she gets interested. If you point out that it's information she may want, though, she may be more resistant.

Congratulations on the new baby, and I hope you are able to settle in and send the relatives home on time. You need time with your new family whether your mom develops better skills or not.

harshedbuzz

Ktufarie wrote:

I am hoping this place will bring in some great advice from people who have experience or to at least make me feel more at ease with the entire situation…

Hi and welcome and congratulations on your impending parenthood. It's an exciting time. 

It sounds like you have a caring heart and some sense of what will be required going forward but from a distance, your knowledge of the situation and ability to support your mom are going to be limited by not only distance, but also your new role as a mom.

In the early and early-mid stages of the disease, it became very apparent to me that my mom's ability to be there for me was severely limited by her role as dad's caregiver. My son is older and my DH is saint-like, so I was able to make trips to see my parents regularly which was nice, but my mom couldn't be there for me in the ways she before she assumed a caregiver role. Even if dad was able to be home alone in the early going, his personality change (I was never his favorite person and he's been competing with me for mom's attention since 1957) became so "needy-baby/greedy-baby" that we couldn't really go off and spend the afternoon at the beach or lunch and shopping. Mom and I had been really close prior; she was my matron-of-honor when I married DH. 

My point is, the vision you and your mom had of her "there for you" as you become mom and abuela will have to be revisited. Caregiving is that all consuming. 

My grandmother has early stage Alzheimers and my mother is her only child and therefore her sole caretaker. I live in Minnesota and they both live in Florida. 

I was also a long distance only with my parents splitting the year between MD/FL while I was hours away in PA. 

If your grandmother was diagnosed in 2017, it's very likely she is no longer in the early stages of Alzheimer's. Hallucinations are a symptom that show up later in the disease process. Alzheimer's is a progressive and fatal disease. Life expectancy is typically 10-15 years assuming the patient doesn't pass from something else. 

This is a pretty good chart for monitoring disease progression. 

Stages of Dementia Dr. Tam Cummings

Right before my grandmother was officially diagnosed, in 2017 she made the rash decision to sell all her belongings and her home and move back to Puerto Rico where she is from. We knew this was a bad idea because her short term memory was getting worse, but we knew we couldn’t do anything to stop her. She’s always been a very headstrong woman. She survived through hurricane Maria that following year living by herself in her hometown, but she would call us and express that she’d see things that weren’t actually there. We knew we had to get her back home. At the time she was easily able to be convinced to come back to Florida with my mom because she was lonely. But as soon as she got back to Florida, she kept insisting she needed to go back to her house in PR. We finally got the official Alzheimers diagnosis, and my mom took the steps to become her medical beneficiary and her legal guardian.

This is strong work from your mom. Good for her.

Has she seen a CELA to investigate options to qualify your grandmother for Medicaid to either get help in the home or placement as the disease progresses?

National Elder Law Foundation (nelf.org)

During this whole process, my grandmother became increasingly frustrated because she felt like she was being held against her will, and took out her anger on my mother, occasionally resulting in physical violence towards my mother. Due to memory care being so expensive, we cannot afford to have her live anywhere else.

You don't know whether a facility is off the table until you have consulted a Certified Elder Law Attorney. Medicaid is the safety net in this kind of situation. (see above link)

Your grandmother's behavior is very common in dementia and can really burn out a caregiver. If your mom has not taken grandmom to a geriatric psychiatrist for medication management for her aggressive and, at times violent behavior, this would be a great idea. This kind of behavior often comes from anxiety and can be eased with medication. Dad was on 3 meds for his mood and anxiety which helped him feel safer and cared-for without sedating him or further impact to his cognition. 

This has been the most difficult for my mother, but what seems to be a bigger issue is how my mom reacts to my grandmothers evolving behavior due to the dementia. My mom takes everything my grandmother says to her so personally, and gets very offended and hurt. This causes my mom to lose patience easily and lash out to her outbursts. I’ve tried explaining to my mom that this is not grandmas fault, but it’s the dementia causing this behavior. I explained that to alleviate heartache we all need to learn not to take it personally because this is the nature of the disease. My mom refuses to accept that and also lashes out at me because she accuses me of not understanding what she goes through because I don’t deal with it everyday. 

IME, hands-on caregivers who are living the 24/7 of dementia can be quite resentful of suggestions made by people who aren't in the trenches with them. I had the same with my mom- she bristled at any suggestion I made telling me I had no idea what I was talking about because I wasn't living it. Grrr. What helped, was after I moved them near me (a great idea for me because I had the time to be of hands-on use/YMMV because of the stage of life in which you find yourself) was to get mom a psychiatrist and talk therapist she could vent to (in addition to/instead of me) and line her up with an IRL Alzheimer's Support Group. In a lot of ways, the support group was the most useful tool in my caregiver for the caregiver arsenal. When her peers- people who were living with/caring for PWD- told her the very same things I did, she listened and even tried some of the suggestions and strategies. I tried to let it not bother me, LOL.

I also printed this out for her because it's a quick and easy read (many caregivers don't have the time and inclination to do a deep dive into books and the internet) and I found it really clicked for me. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Since I am now expecting a baby, my mother and grandmother are staying with me for the next four weeks to help me settle into parenthood. My grandma is experiencing episodes of anger and confusion since this is not her normal place or her normal routine. I have been very patient with her and have sat and talked her through some of her episodes. But my mom is not managing well and almost makes it worse when I try to defuse the situation. Im at a loss of how I should approach this.

This visit was probably not a great idea. Most PWD do not do well with travel even for happy events. They really, really need the comfort of their familiar surroundings and routines. Many people report that their PWD slides down a stage (or more) with a trip, even when it's to a place they've been countless times. The "spouse's board" has at least one active thread on this very topic right now. 

This really sucks. Dementia takes away so much. In addition to losing her mom by degrees, your mom is losing her the ability to be the grandmother she has thought she'd be since you were a little girl. This is a bitter pill to swallow. When one person in the family had dementia- the entire family lives with the consequences of the disease.

More specifically how I should approach my mom to get her to understand how harmful and unhelpful her reactions are without upsetting her or hurting her feelings. At the least someone tell me they sympathize with me lol 

I do sympathize. I do. Really. I felt like this with mom blowing me off.

But I have been on the other side of this, too. I admit that when my uncle would call me with suggestions about what my mom and I should be doing for his beloved brother I kind of wanted to stab him. He was a little in denial about how far dad's disease had progressed, in part because he only heard the sanitized version of things from my mom who was attempting to "protect dad's dignity", but mostly because he'd do a drive-by visit every 6 weeks or so right after lunch when dad was at his best behaviorally. The man had no idea. 

Realistically, in your position- new baby and 1000+ miles away, you can't be much in the way of the kind of support your mom needs which is respite and time for herself. About all you can do is listen to your mom's rants without judgment or suggestions. Resist the urge to fix her problem and just listen. It doesn't sound like much but having a safe place to vent and a chance to talk about anything else can help with the isolation that comes with being a caregiver. 

HB

Ktufarie

I do greatly appreciate all these responses. Part of me is starting to realize maybe it was selfish of me to want my mother with me when my baby gets here. I knew because we don’t have many options for grandma right now that my mom had no choice but to bring grandma with her. And I was naive to think it would be okay because it was ME. 

When I was a child my grandma was my main caretaker since mom was young and had to work to support me. Even with her advancing dementia, we have always had a closer bond than anyone else. And when grandma would have her episodes, and I would call her to try and calm her down, lately talking about my pregnancy and the upcoming arrival of the baby seemed to calm her down and make her happy enough to forget why she was upset in the first place. I also thought that from what I’ve seen and read, things like animals and babies seem to bring joy to PWD. I guess I was hopeful that this would be a good time to have her here. Now I’m starting to feel nervous and wonder if maybe I was being too foolishly optimistic. 

At this point, my induction is scheduled for Wednesday the 5th and we are all officially stuck together until after baby is here. We’ve noticed that when we’re out she seems content and doesn’t get triggered like when she’s inside our home. The few times she’s come with me to appointments and the hospital, she was fully engaged in the situation and also very calm. Which has brought me some hope that maybe everything will be okay. But we shall see. 

I am so glad I found this community. I hope I can convince my mom to reach out for support as well because I really believe she would benefit from it. 

harshedbuzz

Ktufarie wrote:

I do greatly appreciate all these responses. Part of me is starting to realize maybe it was selfish of me to want my mother with me when my baby gets here.

It's not at all selfish. Of course you want the women closest to you to be with you.

I knew because we don’t have many options for grandma right now that my mom had no choice but to bring grandma with her. And I was naive to think it would be okay because it was ME. 

You couldn't have foreseen how this would play out given that you have been physically removed from the day-to-day until they arrived. And, unless your mom has traveled with her mom, she may have been unaware that things could go sideways. 

When I was a child my grandma was my main caretaker since mom was young and had to work to support me. Even with her advancing dementia, we have always had a closer bond than anyone else. And when grandma would have her episodes, and I would call her to try and calm her down, lately talking about my pregnancy and the upcoming arrival of the baby seemed to calm her down and make her happy enough to forget why she was upset in the first place.

That's great that you are able to redirect her mood.

I also thought that from what I’ve seen and read, things like animals and babies seem to bring joy to PWD.

Animals do tend to bring comfort, but sometimes a robotic substitute is a better option as not all PWD are reliably safe around them. More often, PWD engage in unsafe pet care like forgetting to walk pets and overfeeding them. My dear friend's mom used to believe the cat was "naughty" and routinely yell and devise punishments for her out of the blue. Previously, she'd been hugely indulgent with cat who started avoiding mom. They got her a Joy for All robotic cat which she loved. I know of people who have had to rehome pets for the welfare of the animals. 

Children can go either way. My dad, who never particularly liked younger kids, started watching them and then later insisted on talking to kids he didn't know which was upsetting at times. A number of members have had issues with their PWD and children in the family. Sometimes the PWD was annoyed by the noise and mess of young children. A few have even had a situation where the PWD sees their caregiver as their "special person" (this is a form of shadowing and very common in the middle stages) and becomes jealous and competitive of the attention the child is getting. There was a regular poster here whose mom (PWD) sprayed the preschool granddaughter she babysat with what she thought was insecticide. It turned out to be plain water, but she was constantly short and critical of the little girl.  

I guess I was hopeful that this would be a good time to have her here. Now I’m starting to feel nervous and wonder if maybe I was being too foolishly optimistic. 

You wanted them there. It's perfectly natural to. Don't beat yourself up for wanting the experience your friends will have with their moms. In the future, you may want to be the one who travels to them. At some point you may even consider getting a hotel as a place to retreat to if your grandmother needs a break. Maybe, down the line, mom could spend time with the little one and you could do something one:one with your grandmother. 

At this point, my induction is scheduled for Wednesday the 5th and we are all officially stuck together until after baby is here. We’ve noticed that when we’re out she seems content and doesn’t get triggered like when she’s inside our home. The few times she’s come with me to appointments and the hospital, she was fully engaged in the situation and also very calm. Which has brought me some hope that maybe everything will be okay. But we shall see. 

This is most likely a phenomenon known as "showtiming" where a PWD can hold it together and behave in a way that seems practically "normal" for a period of time. This most often happens when a non-caregiver family member is around, or when at a doctor's appointment or some other public place. 

PWD tend to save their worst for the very people with whom they are closest and safest. To that end, deciding on care needs has to be made with grandmom's symptoms/behavior at its worst, not that fleeting time when she's showtiming. 

I am so glad I found this community. I hope I can convince my mom to reach out for support as well because I really believe she would benefit from it. 

I hope you mom can find a place for support. This is a lonely and difficult task she's taken on. Would she be willing to join an online group like this one?

Good luck on the 5th.
HB