How-To Manage Late Stage Patients at Home ?

shark_guy

As a software engineer, I am a detailed planner and seem always to be a bit ahead of myself in thinking through situations and scenarios. In the case of caregiving for DW, I am trying to make a plan for how best to care for her at home vs putting her in memory care. I also cannot get a good grasp on what stage she is in because since she is virtually blind, all the associated stage symptoms show up earlier or in a different place than for sighted persons. For. Example, does she no longer recognize someone or something or can she really just not see them well? Aarrgghh! So, I really can’t tell what stage she is in, probably need to bring this up at her next neurologist appointment

Thinking thru the later incontinence issues that I am told will arise, how as a caregiver is the best way to deal with that. Our bedroom is large so I am thinking that having a separate adjustable hospital-style bed for her might be best and maybe protecting the flooring with a plastic cover and situating the bed close to the bathroom entryway. Any thoughts on or experiences with this and for caring for DW’s daily hygiene would be helpful. Message me if you don’t want to discuss this publicly but I think this is an issue that many caregivers will be faced with

Planning for Stage Uugghh…

charley0419

I’d love to see response for this as one of my biggest concerns

ButterflyWings

Sharkguy - my first thought was that it is tough (impossible) to truly plan for what dementia will throw your way. So being flexible is a major asset. But, yes, incontinence will be here sooner or later. First urinary, then bowel.

Some questions will be whether your LO accepts help from you with hygiene when the time comes. Bathing is a big challenge at some point in mid-stages for many PWDs. And learning to layer the bedsheets with pads (we use disposable chux) so that if there is a midnight "accident", you can take off the top layer and still have 2 more there. Dealing with cleaning her up, changing nightclothes and getting back to sleep faster is sometimes a priority. Ed no longer actively posts here since his beloved wife passed away but he posted great hacks to minimize doing laundry, changing the sheets, and all in the middle of the night. Every night..

The best thing about your proactive nature is that any of these things can start, any day, with dementia. So, it is best to have the supplies on hand and not need them, than vice versa. Does she still wear regular underwear? We switched almost as soon as I started seeing leaks and drips around. Never discussed it with him - I just hid all his boxers and luckily he never noticed. Just pulled out the depends from his drawer and put them on one day. I jumped for joy!

Other supplies: You can start using a 6-sided zip on Waterproof mattress cover immediately. Dementia is a trickster and my DH had a UTI that included full on peeing everywhere, even before incontinence set in. Very glad we didn't have a soaked mattress or sofas. Get incontinence briefs (we use a liner pad inside the pull-ups, but skipped the pull-ups in favor of diaper-style for a year or so, when it was easier to change him -standing or bedridden- using those (no need to remove pants and shoes, etc. with an uncooperative or just confused LO). Adult wipes, zinc cream, handheld shower wand and shower chair, though DH has been a firm "no" on anything other than sponge baths for years.

HERE is one thread of many you can find on this topic. It is absolutely discussed a lot, and many helpful hints to be found. I searched on "hygiene" but you can use "incontinence" too.

https://alzconnected.org/discussion/comment/103418#Comment_103418

ButterflyWings

And, I just found this tool under "resources for caregivers" on this site. Maybe it will be something useful for you to check out? https://www.alz.org/help-support/resources/alznavigator

I started researching a trial plan for you and here's what it provides for Incontinence: https://www.alz.org/help-support/caregiving/daily-care/incontinence

harshedbuzz

I'm sure her vision issues have a big impact on how her dementia presents and tracking certain aspects of the progression. Dad was blind in one eye and had some AMD so it was hard to know what he could see. Things I noticed in him that may not be something you need to manage was his loss or spatial reasoning. He would look at his one-car garage and insist I could park all 3 of his cars in it or tell me how he was going to convert the upstairs mechanicals closet into a Jack & jill suite for guests while looking at the 6x10' space filled by a hot water heater and HVAC system. You won't have the need to replace plates with ones that offer a high-contrast between food and plate so she can see the food.

@Crushed kept his dear wife at home for a long period of time and had some great posts about the changes he made to their home to age-in-place. I'm not sure if they made the transfer over with last year's website overhaul.

Because of her vision issues, you may find you have already done some of the things needed to make your home safer. Some things he did and that are recommended by others to simplify care at home:

A first-floor bedroom for the PWD and securing any steps to avoid falls. This might mean a baby gate at the bottom of the stair to the second floor and a locks installed on doors to the basement and garage. If you PWD is prone to wandering, a lock installed high up on any egress doors and an alarm are helpful. My friend's mom suddenly developed a need to elope in the night. While she waited for her DH to come home and install the alarm system she bought, she made "bear-traps" using chairs with pots and pans on them. It's low tech but very effective. Some caregivers secure off certain rooms in the house if their LO likes to rifle through things or is prone to hiding things they consider valuable. If nothing else, it limits the area you'll need to search. Reversing doorknobs is an easy way to do this. Dad was a hunter-gatherer for a time when he was still home. After spending days trying to find his driver's license and Medicare card-- both needed for ID/medical care, I made color copies and laminated them for his wallet and kept the originals in mom's wallet. Someone told me this is illegal in some places, but it wasn't as if he was ever going to drive so I didn't sweat it.

A first-floor bathroom. Ideally it should have a zero-entry shower, a hand-held showerhead and be large enough for a wheel/shower chair and second person. Wet-rooms with a center drain are even easier for dementia care. My dad's MCF used a commode chair without its basin to make it easier to clean residents' "undercarriages" as needed. As PWD advance in the disease showering can be a nightmare for both parties. Having a small heater and heated towels can help overcome some resistance. Some folks find their wives/moms are more willing to have a stylist come to the home for a shampoo and style than submit to a shampoo as part of a shower. Same with nail care; I often see a caregiver and PWD at the salon getting a quick pedi. If she has diabetes or neuropathy a podiatrist would be an option.

Another reason for the larger bathroom is that as the disease progresses, you will need to assist in the bathroom. Incontinence often starts with the PWD missing steps in the toileting process-- not flushing, not wiping effectively, not disposing of tissue properly, not washing hands. Some people opt to put their LO on a toileting schedule to minimize messes and laundry. Every 2 hours for bladder breaks and visiting the toilet 20-30 minutes after a meal for bowel moments seems to be what works for many. YMMV. A bidet with heated water is very useful. It's best to introduce it sooner rather than later so she can get used to it. My friend recommended getting the one with a remote control so you can operate more easily.

Given your DW's vision issues, you might want to install handrails. In the shower and near the toilet are useful for you both. My friend with the bear traps installed them along the paths her mom typically used in the house-- to her bathroom, to the family room, and out to the garage. As time progressed, her mom became less mobile and used a wheelchair more she installed a portable ramp to the garage. When she built a new home with an in-law suite for mom, she included a path to the backyard from the driveway and then a ramp with switchbacks onto their second-floor deck which allowed her a second egress from their ridiculously big house and an easy way to get mom outside for a walk on the nature trails or out to visit the garden.

It's best to cover the mattress in a 6-sided waterproof cover asap. When incontinence starts, you may find it useful to double make the bed so that you can strip it to reveal and clean and dry set underneath and avoid making a bed in the middle of the night. Some people add a washable or disposable Chux on top of the bottom sheet to cut down on laundry. At some point you will want to install washable spill-proof upholstery covers on the seats where she spends her time. These are also available for your car's seats.

Speaking of cars. You'll probably need to assemble an emergency bag sooner rather than later. This would include adult sized wipes, plastic bags for disposal of incontinence supplies and soiled clothing, old school foam shaving cream and disposable gloves (to manage the odor and general nastiness of bowel movement clean-up), a zippered hoodie because he was always cold, a complete change of clothes right down to shoes and socks. I also carried a AAA card, first aid kit, some Shout Wipes, a shirt for me/mom (dad was a spiller) and a couple sweet snacks for bribes if needed or if an appointment ran long.

They sell sticky sheet plastic for carpets intended to protect them while remodeling or painting that can be used for protection. These can be useful on car seats and floors, too. You may need to replace them over time. Some people elect to install waterproof LVP flooring for the duration.

Now is the time to consider medic alert bracelets for you both. She needs one the lists her dementia and vision issues with an emergency contact; many caregivers add a "needs 24/7 supervision" as well. Yours needs to identify you as a caregiver for a PWD and list someone who can step in to provide emergency care assuming you have that. As part of your Plan B, you should vet both MCFs and SNFs for your top 3 choices should either of you need care after a hospitalization or if you are unable to provide care even temporarily. If you don't have a friend/family member as a back-up POA, ask the lawyer who did your POAs for a suggestion. I have a friend who is a paralegal with a boss who oversees care as a POA for a couple of clients. He's quite diligent; part of her duties include actually visiting regularly to make sure care is good and see if the client needs anything.

HTH-HB

gampiano

Hello Shark guy,

All of the above is excellent advice, and filled with info for the future. Incontinence can be managed at different stages in various ways. When my husband was ambulatory, we used pull ups. The best ones came from a company called Parentgiving. There are also good products from Northshore. All will send you samples to try first. Hygiene can be an issue, and i found disposable, no rinse washcloths on Amazon. They are a life saver. If and when you need a hospital bed, Medicare will pay for that, with a Doctor's rx.

Also, as things progress, don't hesitate to call on hospice care. My hospice aide taught me how to correctly turn, change, move a patient, and how to remove and replace a bed pad efficiently. AND... as Butterfly stated, layering the bedding is a game changer! Especially at 3:am...They also provided all the supplies and equipment we needed STAT.

You are wise to try to anticipate, as these changes can occur suddenly, and it does help to try to be prepared. Just remember to expect the unexpected. The impediment of having no vision is so difficult. I wish you the best.

Maureen

avieDa921)

Shark guy, my DH is stage 6 ALZ. He started on Lorazepam for anxiety Dec 4, 2023 for a month and was having incontinence towards the end of the month maybe twice a day & once at night. I figured out that the increase in the medicine was causing it and agitation, so when I stopped the medication, the incontinence stopped. I do know having this disease can cause incontinence and that's what I thought was happening. Everyone reacts different to all the medications that are offered. He is now on Seroquel 25mg. for anxiety and hoping for no side effects. Best wishes to you & your DW!

ImMaggieMae

Shark guy, lots of good suggestions here. Here are a few things that work for us. My DH has been incontinent for about a year and a half. We have waterproof mattress covers but have very rarely even had a drop of urine even on the bed sheets. Here’s what we do. My DH wears a good quality pull up with a heavy duty pad inside. At night I poke about 5 or 6 tiny holes in the bottom of the pad before sticking it in the pull-up. This way, if the pad gets full it leaks into the center of the pull-up instead of around the edges where it can leak. For occasional small leaks, we use a 36x28” puppy type pee pad over a mattress pad that sits on top of the bed sheets. This is the mattress pad we use: https://www.amazon.com/gp/product/B076X1LF6R/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1

The pads are soft, washable and comfortable, no plastic that can be felt. They were large enough for his side of our king size bed and now that he can’t climb the stairs they fit perfectly on a hospital bed that I rent. My DH sleeps on his back and doesn’t move much while asleep, so that helps. This lasts throughout the night, 8 to 9 hours.

During the day we use pull-ups with a pad inside and can often just change the pad every couple hours. We use a Dekor diaper pail system which sits in the corner behind the toilet. It contains odors and makes the whole changing thing much simpler. I, or a caregiver that I hired for a few hours a week, always go into the bathroom with him so we don’t end up with pads or pull-ups in the toilet. Adult size wet wipes and disposable wash cloths for bigger messes make things easier. We have a shower seat and grab bars installed in the bathroom and shower. He is never alone so we don’t have any accidents in other parts of the house. Once you have all the supplies in place (we order them online in large quantities), incontinence isn’t a big deal. (Except for the cost of all these supplies.) We have a folding chair that I pull up and sit and talk to him while he is on the toilet. I just chatter away. I don’t know how much he understands but I stay calm so he does too.

We have an inexpensive bidet that I was able to install. It makes things a little easier but perhaps a fancier model would be more useful.

It’s a good thing you’re planning ahead. Much less trial and error than scrambling when you suddenly need supplies.

elainechem

My first thought is that covering the flooring with plastic may not be a good idea because it may cause slipping or tripping.

My hubby never became incontinent until the last week of his life, so I can't tell you how to deal with the usual incontinence struggles that caregivers face. I do have waterproof coverings on my sofas and a waterproof comforter on my bed. I have cats you see. Their incontinence is intentional.

JDancer

A bedside commode might be helpful early on.