SLUMS got me in a slump

JulietteBee · 4:05AM

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💔

Kekko · 4:28AM

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.

SDianeL · 4:42AM

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.

JulietteBee · 3:24PM

@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.🙏🏽

JulietteBee · 4:13PM

@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.

Quilting brings calm · 4:39PM

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.

JulietteBee · 5:22PM

@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 neither 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.

harshedbuzz · 6:05PM

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.

HB

psg712 · 9:09PM

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.

H1235 · 9:58PM

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.

SLUMS got me in a slump

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