It’s Now Severe Dementia…

Finishing this three-part series on the stages of dementia has been bittersweet for me, and I hope you have found some suggestions and solace from the previous blogs (early stages and moderate dementia). You see, we are slipping from the somewhat manageable and understandable moderate category, to Mom having severe dementia. We’ve moved past the use of MedicAlert, putting locks up high and removing the covers of the stove burner. It’s time to start moving our dementia patient out.

Severe dementia requires 24-hour, specialized care. 

It’s time to find another place for Mom to live. 

I Am Not A Doctor

Not in real life, the blogosphere, or on TV! I am NOT a doctor of any shape or kind, nor do I pretend to be. All of my information and knowledge comes from reading the works of other people, and my own experiences with my loved ones. Nothing I say should be taken as any form of medical advice. Listen to me, sure, but trust your medical professionals with the continued care and diagnosis of your loved one.

With that out of the way…let’s continue.

While we are still fighting the good fight, here is a snapshot of where we are now…

You Can’t Stop Crying

Mom still knows me (almost) all the time. She calls me her daughter, which is true, but doesn’t use my name. She usually fails to distinguish between my brothers, and she won’t eat or use the restroom without a verbal cue and reminder. Day and night are the same to her, and it’s always Saturday in September, despite what my calendar says. The agitation hits virtually every night, and she skips many meals because she is mad at us. I can’t tell you why, and neither can she. 

She’s relatively oblivious—which is the only blessing of this soul-crushing disease. 

I cry a lot. 

So What Are Her Symptoms?

We are very, very lucky with the symptoms that Mom displays. Very lucky.

She is very rarely aggressive, which is a very common symptom. She does get mad at us from time to time, and tries to barricade herself into her room, but she comes out of it in an hour or so. When she “comes back to herself” it’s very hard for me. She is so remorseful and upset about her behavior that she cries and apologizes through her tears. I can take the irrational anger way more easily than I can stomach her tears.

It will be constant…

Most dementia sufferers lose the ability to complete ADLs—the Activities of Daily Living. This can be a primary reason to start moving your dementia patient out.

This is a hit-or-miss symptom for us right now. She may refuse to change out of her clothes, and forgets to clean her teeth, but she will generally respond to coaxing. A very common symptom is a refusal to shower, and we have that symptom in spades. I’ve heard two reasons for this common problem with dementia patients—one being that they are afraid of that “drowning” feeling, and the second that the hard spray from the shower actually hurts their thin skin. No matter which one it is, this has become a problem for us. Additionally, this one of the most common times I have to put on my “Mom” voice and press the issue. Whenever I can, I let things slide, but poor personal hygiene will lead to problems I can’t even fathom, so this is a battle I choose to fight regularly. 

Loss of mobility and other abilities is another common symptom of severe dementia, and can evolve to an inability to swallow! CLEARLY if you are at this point, strongly consider moving your dementia patient out to a 24-Hour care facility.

Mom lost some mobility when she broke the hip three years ago, and she continues to slow down now. She won’t take more than five or six steps before she stops and looks around. I’m not sure if she is acclimating herself to her surroundings or too tired to continue, so I just stop and wait until she is ready to continue. When she does leave the house, we always use the wheelchair. However, leaving happens less and less. I can’t even imagine her walking from the car door to the doctor’s office at this point, despite the walker.

You Can’t Rationalize It Away

For a long time, it was easy for a casual observer to put Mom’s symptoms down to a brief memory lapse, or say she was just tired.

That’s over.

The loss of cognition is so obvious it is undeniable. We still have some moments of lucidity and clarity—just yesterday she was telling me about her Dad and the jobs he had when she was a girl (and she was accurate!)—but these are fewer and further between now. 

Whereas for years she hovered in that mild to moderate phase, nobody can deny we are sliding downhill on this mountain. 

Helpful Hints

For Her Home

I will do another blog, maybe several, on the extensive search for a suitable place for Mom.

What I will tell you here is how I prepared MY home for her absence. It is important that anything that goes with her must be familiar, so she will not be scared. This means making any changes NOW before she leaves.

For example, she will be moving from a queen to a twin bed, but her bedding here is very familiar and comfortable for her. It took me some time, but I found a similar replacement to use in her new apartment, so she will be more comfortable. I bought her a new throw blanket now, so it will be familiar, and started using two specific beverage cups, because those are the ones going with her to her new location. 

To maintain independence

Memory care, where she needs to be, is a lockdown type of facility. From the perspective of a fully functioning adult, she has lost her independence.

However, it is extremely important that she not FEEL this way. That’s why after she moved in, we worked with her to change the décor to her liking, moving pictures we had hung up. Actually, we moved the entire bed, because she didn’t like where it was. 

The facility will work to try to make her feel like she has some choices and independence, and this includes an apartment door that locks and a “safe” for her valuables. The keys to both of these locks are, obviously, in the hands of the nurses, so there is no real safety issue. So keep this in mind when you decide to start moving your dementia patient out.

The family has significantly more control of the facility than I had imagined. For example, Mom is quite specific about what she eats for breakfast. A quick phone call to the Dietary Manager and her daily offering for breakfast was changed to her favorites. The nurses are available 24 hours a day for me to call or come to visit—and I have visited at different times on purpose, just to see what is going on. The other day Mom was playing a game of bean bag toss with some other women—excellent for muscle movement, hand-eye coordination and socialization. I was happy to be able to witness that. 

Tricks and Devices

The biggest trick is to make sure YOU are prepared for this eventuality in YOUR OWN life, so you can be taken care of when your time comes. The cost of memory care is astronomical, and it is only because of Pop’s brains and cleverness that we can afford this option. It has absolutely made Sweet Husband and I rethink our future. 

One thing I recommend is to never visit empty handed. I stockpile magazines, and bring one each week. One day every week I bring treats—dementia hasn’t impacted her love of chocolate!!!—and I keep her fridge full of soda. These comfort devices give her something to look forward to, something to have when I’m not around, and ground her in reality. 

She can’t have a cell phone, which is no big deal, but the reason was interesting. According to the staff, no matter how far gone a dementia patient is, they seem to know how to dial 911!!! I thought that was pretty funny. I try to use FaceTime to my advantage, and reach out to my brothers and sister on days when Mom is lucid, so they can speak to her. Her bad days I deal with myself, but when she is feeling good, seeing their faces on the screen lifts her spirits even higher. 

Remember Who They Were

So we are done moving our dementia patient out. My life has now changed. After caring for one or the other parent for about 15 years, my house is quiet. With adult kids, Sweet Husband and I are finding ourselves alone for the first time since our oldest was born 28 years ago. 

It’s a transition that we are enjoying. 

I visit every other day for an hour or two, and plan to continue visits three times a week for the duration of this beast we call dementia. You have to find your comfort level with visits—there is no “right” amount of visits, phone calls or letters.

Just remember who they were. Remind them of it at every turn.

Live in the lucid moments of good cognitive understanding.

Smile through the moments dementia robs from you. 

Don’t let them see you cry. 

THANK YOU FOR READING THIS FAR

Wow! You made it! Thank you for reading about moving your dementia patient out.

Hey, since you’re here! You may as well check how to handle moderate dementia, here, or see what early stages of dementia might look like here! Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! What are your next steps in eldercare? Any dementia stories? Let me know!

Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.