I know it’s the disease but I still have feelings and insults hurt

AWM1991

I just need a good ol’ vent. 

I’m just so tired of my mom constantly insulting me and belittling me, and thinking she’s “helping” me. It’s on every issue… my grass is too long, I’m not losing weight fast enough, I’m going to send my daughter to the wrong school in 5 years, I don’t parent right, I don’t eat the right food, I need a new car, I could go on and on and on. And of course a lot of what she says isn’t fully coherent and logical, but she still manages to get under my skin because it’s constant. 

The hardest part is because of her memory and cognitive issues it’s so repetitive. Here’s an example regarding giving my 3 month old anything to suck on to comfort her (finger, blanket, pacifier doesn’t matter). I’ve heard following phrase, no exaggeration, hundreds of times in the last 3 months “mhmm, what is it, you’re going to have to spend $5,000 to fix her teeth.” 

I can’t confront her on it because she doesn’t understand then gets super confused and upset. When I ignore her or try to change the subject she constantly circles back to whatever issue incessantly until I say something about it. I want to scream sometimes. 

I moved my parents out by my husband and I for a few months so they’d get to spend time with their granddaughter. Thank goodness they don’t live with us and they “only” visit 5 days a week not 7 (my mom doesn’t like that it can’t be every day but I needed the two day break for my sanity), but I didn’t realize how much it would wear on me because I didn’t realize how “bad” things had gotten with my parents between my mom’s vascular dementia (which has been around for my whole life but has apparently worsened) and my dad’s severe depression (which I didn’t realize he had until spending time in person with them). They go home in three weeks and I’m glad they got to spend time with the baby but I’m seriously counting down the days until I can go back to the challenges of long distance caregiving. At least that’s the devil that I know.

Anyway thanks for letting me vent. 

harshedbuzz

Congratulations on the new little one.

I am sorry this time should be clouded by the responsibilities of caring for your parents. Being a new first time mom is tough enough without the bittersweet piece of your mom not being up to being the grandmother you'd hoped. 

Vent away. 

Is your dad being treated for his depression? 24/7 caregiving can suck the life out of you. Perhaps it would be useful to find a day program or HHA to give him a break from the repetition?

HB

dayn2nite2

FYI, male caregivers can get so depressed they decide to kill the person they’re caring for and themselves (women don’t seem to do this nearly as much).  Priority #1 is getting him treatment and help or you may end up with 2 dead parents or one dead and inheriting your mother’s care.

julysun

What a nightmare, glad you vented, keep venting. You are brave to have them over 5 days out of 7, in this invitation that sounds like it was a months long invitation. Maybe it's time to talk to your dad and tell him the visit needs to be cut short and they head home now. When the visiting has turned into this, how much quality visiting can be gotten out of this? I don't think much, but I do think this is going to effect you and your baby. You didn't know it would go this way, but it has, and the visit now needs to end. I am sure your dad can figure out how to help his wife/your mom.

AWM1991

Thanks for all of the responses. My dad recently started getting treatment but it’s a long slow process. He’s doing both medication and therapy. He’s got more insight to his mental health but he’s only made incremental improvements in treating the condition so far. I know that these things take time though. 

Unfortunately I don’t think my mom would be amenable to any sort of respite or adult day center type care. She’s aware enough that she’d be extremely upset and just leave. The only way that I can see it working is if they lived in an assisted living together and my mom did the planned activities for the day and my dad did something else. I’ve suggested that to my dad and he’s not ready to move into assisted living yet but hopefully he’ll come around eventually. A HHA might also work because it could be framed like this person is “helping with chores.” 

If it were earlier in their stay I would try to send them home early (which is what people on this forum told me 3 months ago when I first posted about it but apparently I’m stubborn lol). It’s hard because the better days when my mom is more with it and at least less mean are actually decent visits and those lull me into a false sense of security. She really enjoys spending time with the baby and the “good grandma and grandpa” moments are fun.  I don’t know maybe it’s Stockholm syndrome on my part. They’re only here two more weeks so I think I can survive because in addition to limiting the number of days we’ve also limited the time each day to being short so they’re not here all day. 

All of this is just so hard and there are no good answers. 

AWM1991

Today my dad told me he was passively suicidal. He couldn’t bring himself actually say the word suicidal so he made up a code word for it, and on a scale of 1 to 10 he said it’s only slight at 1/2 but still there. It’s not something I’m surprised about at all. I figured he was, but it’s still a lot to actually hear it from him. 

I’m hoping he’s able to stick with medication and therapy. 

All of this makes me worry about the future especially since he doesn’t really take care of himself (e.g. not eating or hydrating much, poor hygiene, hesitant to see a doctor etc). 

harshedbuzz

AWM1991 wrote:

Thanks for all of the responses. My dad recently started getting treatment but it’s a long slow process. He’s doing both medication and therapy. He’s got more insight to his mental health but he’s only made incremental improvements in treating the condition so far. I know that these things take time though. 

I hadn't check in with your thread for a few days and just saw this. I combined the 2 posts as I wanted to weigh in on both. 

I am pleased your dad is taking steps toward his own wellness. That's great. But unfortunately the types of medications prescribed can take up to 6 weeks to demonstrate how they will impact an individual. If he gets a good result, great. But if it isn't optimal, than it's a few weeks to wean off and staring an different medication. It could take a while to find a sweet spot of effective without undue side effects- even more if the psychiatrist with whom he's working wants to trial a cocktail of medications. Talk therapy is good, too, but it could be limited in effectiveness if your dad can't implement the steps he needs to take to get control of his depression which might be a break from or alternative care for your mother.

Unfortunately I don’t think my mom would be amenable to any sort of respite or adult day center type care. She’s aware enough that she’d be extremely upset and just leave.

You can't know that unless you try it. Sometimes PWD settle into the day program routine under the fiblet that they're working or volunteering there and are given tasks like handing out supplies or helping others who are further along on the disease progression. A few of the adult day programs and AL/MC communities have regular visits from a preschool and a foster grandparent program. And leaving? The places for those with dementia are typically secure- she wouldn't be leaving.

 The only way that I can see it working is if they lived in an assisted living together and my mom did the planned activities for the day and my dad did something else.

I nearly dope-slapped my parents' PCP for making this same suggestion. When dad was initially diagnosed, I tried to convince my mother to opt for a lovely Quaker CCRC near me. But she resisted because she enjoyed home ownership and didn't want to live in what she considered an "old folks home".

FWIW, your dad's life won't improve measurably in a hospitality MCF- he'll still have the 98% responsibility of your mom's care. They would likely oversee her medication and do a daily wellness check. If you don't envision her going to a day program willingly, I don't understand why you think she'd join the ones in AL happily. 

I’ve suggested that to my dad and he’s not ready to move into assisted living yet but hopefully he’ll come around eventually.

Maybe I see this differently that you do. The needs of my 2 parents were at odds with one another. I did not agree with the seemingly default position where what placated dad trumped what was best for my mother. I knew dementia was going to take my father; but I wasn't going to let it have my mother, too, as some sort of collateral damage. 

There's an elephant in the room. Your mother is terminal. If she doesn't die of something else, dementia will kill her. Your father needs to consider his needs too, now and as he navigates stage 8 after your mom passes and tries to make a life for himself.

And then there's this- Fully one third of caregivers died before the person for whom they care. What's your plan B? Should your dad become disabled or predecease your mom where will your mom go? Does she have the kind of money that you could provide a 24/7 team at ~$30/hr?

A HHA might also work because it could be framed like this person is “helping with chores.” 

This might work. My dad was very reluctant to care in the home. I had to bully him into it. I used my mom's knee replacement surgery as an opening and told him if he was receptive to HHAs, then she'd be going to rehab so she could concentrate on recovery and he'd be going to the nursing home because APS wouldn't let him stay in the house alone.

HHAs bought dad about 9 months extra at home. It took a while to find a good fit; I imagine it's harder in COVID-times. The first couple of ladies were lovely but their accents were so thick neither of my parents could understand them. The next one made off with some of my mom's jewelry and accidently left another client's checkbook behind with 3 signed blank checks. The last one was great though.

It helped, but my mom needed more coverage. The reality is, she needed more help overnight when dad wasn't sleeping and in the evenings when he was at his least cooperative. And a break meant she had to leave her own home because dad wouldn't leave her alone if he knew she was in the house which meant she was holed up in her guest room. her fantasy was a couple of dad-free hours in her own home which only happened when I took him to his various medical appointments. 

If it were earlier in their stay I would try to send them home early (which is what people on this forum told me 3 months ago when I first posted about it but apparently I’m stubborn lol). It’s hard because the better days when my mom is more with it and at least less mean are actually decent visits and those lull me into a false sense of security. She really enjoys spending time with the baby and the “good grandma and grandpa” moments are fun.  I don’t know maybe it’s Stockholm syndrome on my part. They’re only here two more weeks so I think I can survive because in addition to limiting the number of days we’ve also limited the time each day to being short so they’re not here all day. 

All of this is just so hard and there are no good answers. 

And your dad is going home to this 24/7 without a SO who has his back and in whom he can confide and share the emotional load of watching his wife disintegrate before his eyes. 

Today my dad told me he was passively suicidal. He couldn’t bring himself actually say the word suicidal so he made up a code word for it, and on a scale of 1 to 10 he said it’s only slight at 1/2 but still there. It’s not something I’m surprised about at all. I figured he was, but it’s still a lot to actually hear it from him. 

This is serious. You've been warned. You might want to call the 800 number here or let his therapist know. Caregivers- male caregivers especially- do die by suicide and often take their spouse with them. Please take this seriously. If there are guns in the house, they need to be removed yesterday. 

I’m hoping he’s able to stick with medication and therapy. 

I hope so too, but it might not be enough.

All of this makes me worry about the future especially since he doesn’t really take care of himself (e.g. not eating or hydrating much, poor hygiene, hesitant to see a doctor etc). 

Here's another thought- could your dad also be suffering from a cognitive decline/ It's not uncommon for both partners in a marriage to decline with one flying below the radar because of mutual scaffolding, a different set of symptoms or even just not being as far along.

My mother went through a phase of not taking proper care of herself, too. She was depressed, angry and anxious. My kid is older, so I was at their house several times a week but even then I missed that my medically complex mother was in a state of hopelessness that led her to flake on her own care. She stopped taking her statin because my goofy aunt had feelings, she stopped her BP med because she needed a refill and got stuck on hold for 20 minutes and she dropped her inhaler because it was expensive and "didn't seem to be doing much". 

I finally convinced her to place dad for respite so she could attend her sister's memorial service. As we took the steps, I pushed for her to consider making it permanent suggesting that if she went first, I would be forced to place him in the first and would take whatever was "first available". She went for it. 

Dad died not long after he went to MC. Three months later mom landed in the hospital for a week in terrible condition- clogged arteries, her stenosis had progressed, her BP was off the charts and her COPD was out of control. She survived that, but the next month blew out her optic nerve because of BP issues. Her vision wasn't great before, but now she can't drive and even reading can be a struggle. In stage 8, she is not living the life she'd planned for. She's lost a great deal of independence and feels terrible that she's forced me into having to be more of a caregiver than she would like. 

AWM1991

harshedbuzz wrote:

AWM1991 wrote:

Thanks for all of the responses. My dad recently started getting treatment but it’s a long slow process. He’s doing both medication and therapy. He’s got more insight to his mental health but he’s only made incremental improvements in treating the condition so far. I know that these things take time though. 

I hadn't check in with your thread for a few days and just saw this. I combined the 2 posts as I wanted to weigh in on both. 

I am pleased your dad is taking steps toward his own wellness. That's great. But unfortunately the types of medications prescribed can take up to 6 weeks to demonstrate how they will impact an individual. If he gets a good result, great. But if it isn't optimal, than it's a few weeks to wean off and staring an different medication. It could take a while to find a sweet spot of effective without undue side effects- even more if the psychiatrist with whom he's working wants to trial a cocktail of medications. Talk therapy is good, too, but it could be limited in effectiveness if your dad can't implement the steps he needs to take to get control of his depression which might be a break from or alternative care for your mother.

Unfortunately I don’t think my mom would be amenable to any sort of respite or adult day center type care. She’s aware enough that she’d be extremely upset and just leave.

You can't know that unless you try it. Sometimes PWD settle into the day program routine under the fiblet that they're working or volunteering there and are given tasks like handing out supplies or helping others who are further along on the disease progression. A few of the adult day programs and AL/MC communities have regular visits from a preschool and a foster grandparent program. And leaving? The places for those with dementia are typically secure- she wouldn't be leaving.

The fiblet about working or volunteering is a good one. My mom’s always talking about wanting to get “a job” and even takes it to the point where she goes through the phonebook sends out resumes to every business in there. 

 The only way that I can see it working is if they lived in an assisted living together and my mom did the planned activities for the day and my dad did something else.

I nearly dope-slapped my parents' PCP for making this same suggestion. When dad was initially diagnosed, I tried to convince my mother to opt for a lovely Quaker CCRC near me. But she resisted because she enjoyed home ownership and didn't want to live in what she considered an "old folks home".

FWIW, your dad's life won't improve measurably in a hospitality MCF- he'll still have the 98% responsibility of your mom's care. They would likely oversee her medication and do a daily wellness check. If you don't envision her going to a day program willingly, I don't understand why you think she'd join the ones in AL happily. 

So I got that suggestion from one of the facilitators at a dementia support group. It’s not something I came up with on my own. She suggested for the wellness check and medication part. My mom manages her own meds at this point and it might be helpful to have someone do that because she won’t let my dad help with medications. Then for the wellness check our facilitator suggested it might be helpful to have someone also checking in on my dad. 

I think she’d be receptive to a residential assisted living facility because every time we pass one she goes “We should stop by that old folks home and get a brochure.” She’s a busybody and doesn’t like to be “cooped up” during the day but would probably have no problem living somewhere where someone checks on her but she’s free to leave during the day. 

Again yes never know until we try and the above fiblet might be helpful. 

I’ve suggested that to my dad and he’s not ready to move into assisted living yet but hopefully he’ll come around eventually.

Maybe I see this differently that you do. The needs of my 2 parents were at odds with one another. I did not agree with the seemingly default position where what placated dad trumped what was best for my mother. I knew dementia was going to take my father; but I wasn't going to let it have my mother, too, as some sort of collateral damage. 

There's an elephant in the room. Your mother is terminal. If she doesn't die of something else, dementia will kill her. Your father needs to consider his needs too, now and as he navigates stage 8 after your mom passes and tries to make a life for himself.

So I want to give a point of clarity. There are dementias that aren’t terminal which my mom has. She doesn’t have Alzheimer’s or another terminal dementia. Unless she develops another dementia (which is possible) she’s going to die with her dementia not from it. 

Given the state of the rest of her health she could live well more than a decade according to doctors.

And then there's this- Fully one third of caregivers died before the person for whom they care. What's your plan B? Should your dad become disabled or predecease your mom where will your mom go? Does she have the kind of money that you could provide a 24/7 team at ~$30/hr?

Oh I know that’s a problem. I don’t have a plan B. There’s no other family. I’m it. That’s why I’m joining support groups and I’m on this forum. I’m trying to figure it out while still being able to take care of myself and my own family. 

Given his physical health currently I don’t doubt he’ll die before my mom. Even if he lives another 10 years I might still have 10+ years of caring for my mom to figure out. 

I’m honestly trying to figure it out. You’re just catching the slice where I’m right in the middle of it. 

Another suggestion from our support group facilitator was getting in touch with a medical social worker to help with planning which is on my to do list.

A HHA might also work because it could be framed like this person is “helping with chores.” 

This might work. My dad was very reluctant to care in the home. I had to bully him into it. I used my mom's knee replacement surgery as an opening and told him if he was receptive to HHAs, then she'd be going to rehab so she could concentrate on recovery and he'd be going to the nursing home because APS wouldn't let him stay in the house alone.

HHAs bought dad about 9 months extra at home. It took a while to find a good fit; I imagine it's harder in COVID-times. The first couple of ladies were lovely but their accents were so thick neither of my parents could understand them. The next one made off with some of my mom's jewelry and accidently left another client's checkbook behind with 3 signed blank checks. The last one was great though.

It helped, but my mom needed more coverage. The reality is, she needed more help overnight when dad wasn't sleeping and in the evenings when he was at his least cooperative. And a break meant she had to leave her own home because dad wouldn't leave her alone if he knew she was in the house which meant she was holed up in her guest room. her fantasy was a couple of dad-free hours in her own home which only happened when I took him to his various medical appointments. 

If it were earlier in their stay I would try to send them home early (which is what people on this forum told me 3 months ago when I first posted about it but apparently I’m stubborn lol). It’s hard because the better days when my mom is more with it and at least less mean are actually decent visits and those lull me into a false sense of security. She really enjoys spending time with the baby and the “good grandma and grandpa” moments are fun.  I don’t know maybe it’s Stockholm syndrome on my part. They’re only here two more weeks so I think I can survive because in addition to limiting the number of days we’ve also limited the time each day to being short so they’re not here all day. 

All of this is just so hard and there are no good answers. 

And your dad is going home to this 24/7 without a SO who has his back and in whom he can confide and share the emotional load of watching his wife disintegrate before his eyes. 

I do think you might be misunderstanding the situation a little bit. My mom has been in a slight cognitive decline for 32 years since her hemorrhagic strokes. It’s just that “slight decline” over that long of a period eventually gets to significant cognitive limitations. Then throw a period of severe mental illness into the mix about 10 years ago. 

So she’s not exactly “disintegrating before his eyes.” 

In his words not mine, “70% of the time when we’re alone together she’s ‘normal’ and it’s the 30% that’s the problem.” 

I’m obviously not there when it’s just the two of them so I don’t see as much of the functional side as he does, but he said if it wasn’t as “normal” as it is when they’re alone together he would’ve made different arrangements years ago. 

I think we’re just approaching a tipping point and I honestly think some of it is because they’ve been in a new environment the last few months. Being in a more familiar city and state might help my mom reorient some. Or not. But they want to go back home. Especially my dad he’s ready to go back. He’s even told me today that he’s made some appointments with doctors to tackle his physical health once he gets back. 

At the end of the day I can’t force them to stay here. 

He clearly needs more support and I know that, and I’m trying to help get him more support. He’s doing therapy now. I’ve gotten him to come to zoom dementia support groups with me. I’m trying to encourage him to talk to his siblings more. He’s under a lot of stress so he’s been emotionally offloading onto me and I do what I can but he needs more support than I can provide which is why I’m trying to also connect him with other people. 

Today my dad told me he was passively suicidal. He couldn’t bring himself actually say the word suicidal so he made up a code word for it, and on a scale of 1 to 10 he said it’s only slight at 1/2 but still there. It’s not something I’m surprised about at all. I figured he was, but it’s still a lot to actually hear it from him. 

This is serious. You've been warned. You might want to call the 800 number here or let his therapist know. Caregivers- male caregivers especially- do die by suicide and often take their spouse with them. Please take this seriously. If there are guns in the house, they need to be removed yesterday. 

Yes I know. It’s terrifying but there aren’t a lot of resources for passive suicidal ideation. Everything is about active thoughts. I found some resources online I shared with him but there’s not a lot of support for that. 

There are no guns in the house. Never have been. 

I’m hoping he’s able to stick with medication and therapy. 

I hope so too, but it might not be enough.

All of this makes me worry about the future especially since he doesn’t really take care of himself (e.g. not eating or hydrating much, poor hygiene, hesitant to see a doctor etc). 

Here's another thought- could your dad also be suffering from a cognitive decline/ It's not uncommon for both partners in a marriage to decline with one flying below the radar because of mutual scaffolding, a different set of symptoms or even just not being as far along.

I wouldn’t be surprised at all. Which is another reason getting them into assisted living might be helpful even if it’s just for another set of eyes on him. 

He has significant orthostatic hypotension where he can barely walk more than a few feet without having to sit back down (until he’s been moving for about 30 minutes then he’s fine) so I think part of it is that he’s not getting enough oxygen to his brain right now. 

He won’t go to urgent care or the ER about it but that’s the appointment he made for when they get back home. 

My mother went through a phase of not taking proper care of herself, too. She was depressed, angry and anxious. My kid is older, so I was at their house several times a week but even then I missed that my medically complex mother was in a state of hopelessness that led her to flake on her own care. She stopped taking her statin because my goofy aunt had feelings, she stopped her BP med because she needed a refill and got stuck on hold for 20 minutes and she dropped her inhaler because it was expensive and "didn't seem to be doing much". 

I finally convinced her to place dad for respite so she could attend her sister's memorial service. As we took the steps, I pushed for her to consider making it permanent suggesting that if she went first, I would be forced to place him in the first and would take whatever was "first available". She went for it. 

Dad died not long after he went to MC. Three months later mom landed in the hospital for a week in terrible condition- clogged arteries, her stenosis had progressed, her BP was off the charts and her COPD was out of control. She survived that, but the next month blew out her optic nerve because of BP issues. Her vision wasn't great before, but now she can't drive and even reading can be a struggle. In stage 8, she is not living the life she'd planned for. She's lost a great deal of independence and feels terrible that she's forced me into having to be more of a caregiver than she would like.