SLUMS got me in a slump
My DM who is my pwd was given the SLUMS test today. She has been diagnosed with mild cognitive impairment/early stage Dementia, in December 2024.
After much pleading she got authorized for an MRI. In July, she was diagnosed with Vascular Dementia. She is not on any meds. She refused both, Aricept and Memantine.
I've observed her decline for AT LEAST the past 4 years. Yes, like all others, she swears she does not have it and is convinced she would have been able to continue driving, were it not for me talking her out of renewing her insurance at $2400/year.
Anyhow, today, her new PCP gave her the SLUMS test. It was heartbreaking to realize that my college-educated mother could not come up with the name of more than 7 animals in 1 minute. Even at one point, saying, "Monkey," then retract it and said a monkey wasn't an animal.
It was heart shattering coming to the realization that my mom had no mental image of a clock face in her memory from which she could pull from, to draw a clock and indicate ten minutes after 11 on it.
I told her PCP about her roadtrip confusion and my recognition that she is currently in a decline, with her complaining daily that she feels, "Mixed up in my mind." The doctor is consulting with a neurologist to get ideas about meds that I know my mom will not take.
She left the appointment in tears. I guess she felt betrayed by me, though I had told her I planned to share everything with her doctor.
I am now at the point of hiring in-home caretakers. I had asked mom about it last week. She refused to commit to it.
Her doctor told her she really should get someone to come in and ensure she eats breakfast, take her meds, and even walk in the park with her.
The park is literally across the street from her. Since her fall in August, she has not gone for her daily walks anymore as she says she now fears a repeat.
I truly do not know what to do or how to cope with this disease, as it erodes my DM's brain, bits and pieces at a time.
I feel totally overwhelmed, unprepared, and angry, all at the same time.
I loved my sibling dearly. However, I am finding that over a decade after their death, I am now ranging between being resentful of them being dead, to being envious of them.
I have always been the one living with an incurable, life threatening, disease. Yet, here I am, preparing perhaps to bury the last of my birth family. Dementia sucks…ijs💔
Comments
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Hi there,
I just wanted to share that hiring a compassionate caregiver can make a big difference. Look for someone with a kind heart. I worked as a caregiver years ago, and growing up with my grandmother taught me how to connect with older adults. We also received solid training, especially in supporting those with dementia.
I truly loved the people I cared for, and many of them grew to love me too. Some were in advanced stages, others just beginning their journey — but we always found joy in the little things available to them. I also built strong relationships with their families, and I know it gave them peace of mind to see their loved ones cared for with warmth and respect.
Now, I find myself on the other side — as the child of someone newly diagnosed. Just a week ago everything "was just fine" and now I am on this website. I’m also nervous about my mom’s upcoming psychoneurological testing, I can't even sleep normally, and I live on coffee and boiled eggs literally. I need some time to digest the news.
Sending hugs your way — you’re not alone in this.
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so sorry. Yes it sucks!! It’s heartbreaking to watch your loved one progress. Each new behavior is like a kick in the gut. Based on the behaviors you mentioned I would be concerned about her living alone even with part time care. It’s not safe. She could start a fire or wander off. She needs 24/7 care. Whether she likes it or not. Her safety is the most important thing. If she won’t commit to in home care you should consider a MC facility. Some have used fibs to get them to accept in home help. For example telling them that it’s a college student who needs to work to earn credits. She would be helping them. The least you can tell your Mom the better. Before you go with her to the doctor send the doctor a message of her behaviors before the visit and don’t discuss them in front of your Mom. Your Mom has the inability to comprehend she has a disease. You are trying to reason with someone whose reasoner is broken. Her short term memory is gone. She won’t remember anything you tell her. The medications the doctor suggested don’t slow progression. They might increase her focus but I saw no difference after the doctor put my husband on Memantine. I wouldn’t worry about any medications for dementia. Anti anxiety meds do help with behaviors. A Geriatric Psychiatrist is the best doctor to manage those meds.
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@Kekko, thank you for the hugs AND assurances that there are compassionate caregivers available. It just requires time & proper vetting, to find them. My mommy deserves nothing but the best. She & I were very compassionate & empathetic RNs who took care of other people's loved one. I hope that in her time of need, I can find someone who is just as we were.
I am so sorry to know your life got upended just 1 week ago. I am not naive enough to tell you that it gets better with time. In most cases, there is only more devastation to come.🙏🏽
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@SDianeL, it is the hardest thing to watch. It is similar to watching a fatal fall happening in slow motion. You can do nothing to stop it, or slow it down any further.
Yes, after her visit yesterday, I realize that I am just going to have to hire the person without seeking her input. If you understood the relationship we have always had, you would understand how difficult that is & how difficult it will continue to be.
I ALWAYS ran any major decisions by my parents. After my dad died, my life struggles/difficulties were always filtered through her eyes. Her type-B personality always had a calming effect on my raging type-A emotions.😥
As long as I live, and her funds continue to exist, she will not be placed in a MC/AL. My view, or my statement, is in NO WAY shaming anyone who has had to place their loved one. To place a loved one requires much more courage than I currently have.
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Have you visited an AL recently? Mom’s was nothing like the skilled nursing homes of old. Beautifully decorated in the common areas, plenty of seating and well lit. Mom’s had a library area with a fireplace, a game area, etc, Plenty of hallways to walk inside out of the weather. People to visit with, but privacy in your own apartment too. 24/7 staff to help with medications, meals, laundry, housekeeping, transport to area stores and doctors. Your mom might actually do better in this type of setting than with in home care.
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@Quilting brings calm, thank you for the suggestion. No, I have not visited one recently.
My mom's IL facility is on the same grounds as their AL. Though I have not toured it, the buildings are the same. The services & amenities are the same. The only difference is that their rent includes caregivers for ADLs and med management.
As an RN, I would not need their LPN to manage her meds. Mom is not at the stage of needing help with ADLs. For the increased cost, I just do not see the increased value she would be receiving.
I am willing to tour AL facilities to see if they are all alike, but if they are, I'd just as well keep her where she is & bring help in. The help is more so to fill the gaps & help me on those days I am forced to be bedbound.
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It's painful watching someone close to you become less of what they once were. Watching for formerly handsome and well-groomed dad morph into a pitiful shower-avoidant yeti was upsetting and we didn't even have a great relationship.
@JulietteBee said:As long as I live, and her funds continue to exist, she will not be placed in a MC/AL. My view, or my statement, is in NO WAY shaming anyone who has had to place their loved one. To place a loved one requires much more courage than I currently have.
There are a lot of reasons people place their LOs when they'd rather not. Reading the above raised 2 concerns that I would consider in your shoes.
The first is your need for a solid Plan B. Everyone who provides caregiving needs to have a capable and willing backup who can step in on-the-fly if needed. Given your health concerns, this might be more critical for your mom than for most. Part of that Plan B should be touring and selecting both MCF and a SNF choices should your successor decide to place mom. You know her best making you the person most qualified to decide on this. Assuming backup is your adult child or spouse, consider that they will be taking over in the context of helping your during a serious medical issue or in mourning. Having a playbook to follow would be best.
Many who place do so for financial reasons. It's not just that hourly in-home care becomes cost prohibitive vs a MCF for many families as 24/7 care is needed. Aides can run $30/hour which is about $5K a week or about twice what a very nice MCF would cost.
Most nice MCFs that do accept Medicaid operate under a business model that favors residents who are self-pay for about 2 years before converting to one of their limited Medicaid beds. Your plan to keep mom home until the money runs out could result in having to accept a less nice facility should she need one.There is also a concern that your mom might have a medical event— a hip fracture or stroke— that makes in-home care unsustainable. Becoming a 2-person lift doubles that cost of in-home care. Since most MCFs require new residents to be ambulatory and self-feeding, she would be shut out of MC with its private suites and dementia informed programing while paying considerably more monthly.
HB3 -
My MIL, who had physical disabilities but NOT dementia, lived with us for the last 7 years of her life. DH had a job at that time that allowed him to work from home, while i was working an outside job and coordinating care for our young child. In the last year of MIL'S life, we hired caregivers to come in for the mornings. She needed help with bathing, dressing, meds, breakfast, and in her condition this took a long time. DH would be late to scheduled meetings and get behind on work. So, the caregivers allowed him to focus on work while they handled the ADLs.
Word of mouth was our lifeline in finding experienced, competent, compassionate and reliable caregivers. We actually found 2 CNAs who worked as a team and covered six mornings a week (Saturdays so we could both attend our son's rec league games or events at the park) - they worked out which one was coming on which day. They were a huge blessing for us and felt like extra family for that last year. Even though they were only here half days, it still wasn't cheap. MIL had limited funds and much was depleted by the time of her death. Still, they allowed us to keep her at home for that final year.
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Keep in mind that if she is a person who enjoys socializing a facility offers people her age to talk with and spend time with. At my brothers house mom did bother to get dressed in the mornings because she wasn’t going anywhere and wasn’t going to see anybody anyway. In Al she made friends she enjoyed spending time with. She cared about her appearance, would even occasionally wear some jewelry and made sure she spent time to fix her hair each morning before going down for breakfast. Every person is different and every situation is different, just trying to give a different perspective.
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I know how you feel. She’s lucky to have you for her daughter. Hugs. 💜
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Thank you, @SDianeL. I needed the hug and the kind reassurance.😭
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@H1235, thank you for sharing another perspective. I agree with you 100% that she would benefit with the social aspects of living in a community. That was one of the key points I was able to use, last year, to encourage her to move out of her mortgage-free home and into an IL facility. Every day I would hear her complaints of how loneliness is killing her.
You know how cheerleaders in high school make up the clique that everyone desires to be friends with? My mom is that person at her IL facility.
Without exaggeration, EVERYONE loves her! When she took a tumble in August, she became shy about being seen with a massive hematoma on her forehead and extensive facial bruising. She opted to stay in her apartment and have her meals brought up to her. A few days later, after much encouragement from me, she ventured out to the dining room for dinner. Most of the residents whether going in, or going out, made a point of stopping at her table to enquire how she was feeling. Mom was so surprised by the love and concern shown, she whispered to me, "I guess I am popular." I had to ask her why she doubted it. I see it every tIme I visit. Staff and residents alike, know her by name, and she proudly introduces them to me. "This is my daughter!" She has always been a very sociable person. A stranger is literally a new friend she is yet to meet.
As I had said in another comment, the AL provides the same exact amenities & activities as the IL. It provides for ample socialization. The only noted difference is the rent includes a caregiver to help with ADLs and med passes. I currently manage her meds and she is still independent with her ADLs.
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@psg712, that was a sweet setup for your mil. THAT is what I would like. For starters, I would be content with 1 day per week. I envision I could spend that day at home, anxiety-free, knowing that I do not have to have palpitations each time the caller-id declares "Mom is calling."
As she progresses, I know more caregivers and extended hours, would be needed. For right now I literally just need a consistent 'day off.' I am burning out fast, while her disease is progressing slowly.😢
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Once again, HB, your comments leave me with much to ponder. I never really considered that my Plan B may well have to be implemened during a time of MY own incapacitation or death.
You are correct! Being the one who knows her best, it would be ideal that I tour & eventually select a facility to help point my survivors in the direction they should go.
I often reflect on my dad's type-A personality and how he had his end of life matters mapped out to the minutest detail. Upon his death, my sibling, my mom, and I grabbed a folder, went to the funeral home, signed one form and left.
I should do that for my family. They should not have to grieve AND scout around for a place for mom. I owe them that.
As far as MC and 2-years of self-pay before Medicaid kicks in, I never understood it that way. In my state, there are 4 ways to legally spend down her assets. I was told once they have been spent down, and mom fails her functional assessment, I can go ahead and apply for community-based services to help her "age in place.
I just had this discussion today with my child, and we decided to have another consult with our elder law attorney to make sure I do have the proper understanding, especially now that I see the time is here where she needs the additional services.🙏🏽
Thank you for responding and for your insightful comments.
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@JulietteBee said:
As far as MC and 2-years of self-pay before Medicaid kicks in, I never understood it that way.
It's saying the quiet thing out loud. AL/MCF aren't going to broadly advertise this. They're going to waitlist you and prioritize their current residents for the handful of Medicaid spaces they maintain for when they money runs out.
One thing I did with my dad was to contact his doctors ahead of time via a patient portal or email. I send a bulleted list of new concerns and behaviors which meant I didn't have to throw him under the bus during appointments. During appointments, I took the chair behind dad in the sightline of the doctor so I could confirm/deny dad's (and mom, too) self-reporting non-verbally which allowed me to present myself as his ally.2 -
@harshedbuzz, I always contacted her previous PCP via her portal with things I wanted him to discuss with her at her upcoming appointment. Her new PCP's office just set up their patients' portal and does not currently have an area to message any of their clinicians. They only have an area to request referrals.
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@JulietteBee
DS's geri psych was a one-man-practice who didn't have a portal. I could email or discretely slip the check in person/doctor a list of concerns. Maybe that would work for you.
HB1 -
Yes, that could work for me also. Thank you for the idea.🙏🏽
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My Mom was just officially diagnosed in March this year - Mixed; Vascular Dementia and Alz.
There were little things I noticed that were "Off", and suggested we visit a doctor to check her out. She was not happy about this, but eventually got her to go. After the visited she was very upset with me and didn't talk to me for a few days. From diagnosis to today, things have progressed fast!
I started touring Assisted Living facilities, while we were awaiting her initial neurologist to get a diagnosis hoping (part denial), that we could take this route. My Mom is young - 71 at diagnosis, and I work fulltime. We worked with a senior living specialist who after hearing about what was going on, prompted me to at least look at a few Memory Care facilities, as it's best to not make a bunch of moves.
During the waiting to figure out what was going on phase, we did end up having to have caregivers stay with her during the day (we used a service). This proved frustrating. Most were not that good/engaging, and when the same caregiver couldn't be there, having a new person freaked mom out. Staying at home was just proving to not be in her best interest.
Mom's been in Memory Care since late spring (and we did end up having to change her facility. The level of care with the first place quickly started going down - not good), and now she's thriving on the routine. I am comforted to know that they love and care for her and it alleviated a lot of stress. It's still hard - I wish it didn't have to be this way. It's not supposed to be this way. And we see her slipping more and more away from the Mom we know.
But as someone mentioned, I would take the time to at least look at facilities. Not all are created equal and it's overwhelming looking if/when you need to make a decision for help.
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@lenelson23, thank you for sharing your experience. I guess by all metrics, I am already behind the curve.💔
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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