Lessons Learned

(This can be done over time – but address early)
Remove all outdated clothes, wrong sizes, seasonal apparel, and clothes that need ironing or dry cleaning. As the disease progresses, you will find that 4-5 pairs pants, and 4-5 tops, and 2- 3 nightgowns will be all that is needed. Clothes that are easily interchangeable and of the same style help build a routine and positive association with dressing.

Remove all shoes with heels,shoes that do not provide good walking support, or shoes that are difficult to put on or keep secured. There are options for sturdy slip-ons that work for inside and outside walks. (Skechers, & Silverts.com)

Options change as the disease progresses. Start with elastic waist pants, slip on shirts / nightgowns that are stretchy and do not require ironing. Remember, that as the disease progresses, it will require your full assistance in getting dressed in the morning and changing to sleep apparel at bedtime. When assistance in dressing is required, an adaptive wardrobe that makes getting dressed a breeze for wearers and caregivers alike is best. We have several high quality, nice looking options and prices are very reasonable.

The use of motion detector night lights (plug into socket) – minimal cost and can help light various rooms at night – limited to the amount of  time the light will stay on. Needs met: comfort & safety, 

A better way to provide light –The installation of motion detector light switches – Any existing switch can be changed to a motion detector switch. Recommending a motion detector switch should be installed in hallways leading to bathrooms, the master bathroom  and the master closet.  The value of the motion detector switch is that pathways and rooms are well lit and you can adjust timing so that the light will stay on for up to 5 minutes, which gives a person a lighted pathway back to bed etc. – cost estimate of @ $100 per switch.  Needs met – comfort & safety 

Cordless Smart Caregiver floor alert matts – The matt fits under bed and extends into the floor area so that when a person gets out of the bed and touches the matt  the Caregiver Alert Monitor beeps – loudly.  Because it is cordless, the monitor can be up to 30+ feet away.  This is a great tool if you are in a separate bedroom or when your partner takes a nap.  It can also be used in front of doors.  Using the matt lowers the  stress of constantly feeling the need to monitor if someone is getting up etc. purchase at: smartcaregiver.com 

Adjustable beds – There are options to have adjustable bases for your bed that allows  adjustments to the position of the head, back and  legs. The adjustable bases  are available at department / mattress stores – look for what they call a “split king” which provides the comforts of a king bed, however because the base is split, it is like two twin size adjustable frames allowing you and your loved one  to have independent adjustment for their best comfort.  By having the split king, at a later date, the bed could be divided and you have two twin size adjustable beds,  You can also review smaller than king size that have adjustable bases -but cannot be separated at a later time.

Absorbent leak proof incontinence pads for bed and chairs– come in various sizes to use in the bed as well as on chairs and couches. Why – because if a loved one does have a mishap, the pads will absorb the moisture and thus only need to change out pad – vs. new sheets, mattress pads. Also great for chairs and couches – surfaces where a loved one will be sitting, to eliminate odors and provide some dignity because pads can be changed quickly with no drama. a good source on Amazon: Gorilla Grip Washable and Reusable Underpads, Absorbent Leak Proof Bed Incontinence Pads, various sizes, (we use 35 x 32 for bed); Slip Resistant Bedwetting Pad Protector Absorbs up to 5 Cups for Bedwetting.

A top recommendation – the Bidet toilet or washlet seat added to existing toilet– for sustained health, dignity, & reduced stress of loved one and caregiver.

Bidet systems provide an excellent way to clean the body to help  prevent such problems as urinary tract infections.  In addition, as the stages progress, many people might not  shower as needed  and using a bidet or washlet will help to provide proper hygiene between showers.  Such an appliance may extend the time a person can remain at home. 

The Modern Bidet toilet system, which can meet all handicap requirements,  is an all-in-one toilet bowl and seat that provides a complete  remote controlled cleaning/ drying system. 

One source for the bidet toilet: Toto all-in-one toilet (NH model). A local plumber can provide information on sources and installation. Mountain Land Design (MLD) in Salt Lake City has the full line of Toto toilets in their showroom.

A washlet seat – most times can be added to the new / existing toilets. The cost is considerably less than the full system.

If a bidet is  not an option Replace old toilets with ones that meet all handicap requirements as to height and size.  Replacing toilets, in most cases, does not require structural changes to the bathroom. The increased height makes it much easier to sit down and get up. Before installing grab bars around the toilet area, investigate freestanding commode stability handrails such as the Vive Stand Alone Toilet Rail.

Shower stalls / and tubs – It is important to consider if the bathroom needs an update or add if needed, a large shower stall. If the bathroom has only a tub, it should be considered to replace the tub with a walk-in shower stall.  This would eliminate the tub.  However, this would create an environment of comfort, reduce work /danger to get in and out of a tub. (reduce falls!)  If keeping the tub is the only option, (cost etc.) there is what is called a transfer bench (legs of bench are outside and inside the tub. – allows a person to sit on a bench outside the tub and then slide the seat into the tub.  This could be a safe alternative. 

The shower stall should be large enough to have a free-standing shower chair (just to relax, and great for washing hair), a hand-held shower head and appropriate hand rails.  Either a shower curtain or a sliding glass door can be part of the shower system.  By having a properly sized shower stall, safety for both the loved one and care partner, who in later stages assists with the shower, is maximized

Eliminate clutter on counters, walkways and  living spaces to minimize confusion and disorientation.  All pathways should be wide enough for a walker.  Coffee tables or side tables may need to be removed to create best access to couches / chairs and create a safety corridor. Use absorbent pads on sitting surfaces.

Lift / Reclining chairs – as the stages progress, it becomes more difficult  to sit down or get out of chairs / couches.  This can be a major problem and potentially dangerous for the care partner when trying to lift someone from a sitting position.  Lift chairs provide the needed help to assist in lifting the loved one to a position they can easily stand alone or with a little steading assist by the partner. Lift chairs can be found at department stores, medical equipment companies as well as used chairs in online classified ads, and range from under $1000 for basic functions to $4000 for top models.

In one of the rooms, we would like to recommend setting up a craft table – which your loved one can always to go to enjoy puzzles, painting, coloring alone or with you or visitors (like grandkids). See notes on Communication and Engagement for different strategies and progression of activities.

Determine best way to store knives, or dangerous materials.

If the dining room table area is carpeted, use sturdy chairs and ideally a wheeled adjustable work chair with armrests.  This chair provides in and out mobility and comfort for your loved one, and a familiar eating place and routine. Do not use a wheeled chair on wood / laminated / tile floors as this increases a potential fall – the chair can slip out from under the user.

Rather than label kitchen cupboards as some suggest, take a section of cupboards, if possible, close to the dishwasher, and remove the doors. Load this section with the most used plates, bowls, glasses etc.  This allows quick retrieval when preparing a meal as well as quick put away after washing.  Putting dishes in a drawer is VERY helpful and decreases the need to lift plates or bowls into cupboards (helpful for seniors, and also children who cannot reach high!)

Utensils and Rimmed Plates: Traditional silverware and plates became a challenge when assistance was needed.  Forks and knives are not necessary once assistance is needed; silicone spoons and sturdy plastic plates with raised rims and non-skid bottom surface provide good safe alternatives.  Plastic cups with one or two handles allow independent drinking longer than regular glasses or straws.  

All can be found on Amazon.com with a search for caregiving or disabled utensils/plates.  Some examples of products we have used are: Silicone Spoons,  Ableware Inner-lip plate, Scoop Plate for Disabled Adults

 Security Door Locks are needed on the front door and any door leading to a garage or backyard. In most situations, the loved one will experience times when they try to leave the home saying, “I want to go home,” or “I want to go to my mother.” They will instinctively go directly to the doors to try to leave.  This, in our experience, continues through most stages of the disease, yet decreases with intensity (easier to deflect) over time.  However, additional security locks remain necessary to insure no exit from the home without attendance. Visit a local locksmith that has a showroom and compare various locks that are available. One recommendation is  the Defender Security Lock – U 10827. The locks were installed by the locksmith on the upper part of the two doors in our home that lead directly outside.  

Monitoring mats can also be used at doors– refer to the master bedroom for description. Also remember to put up stair gates where necessary to help prevent falls.

Become a favorite at the salon!! Finding an understanding and patient stylist is essential, and helps to make it enjoyable.  Most recently for us, the stylist accommodated and began coming to our home for haircuts, which makes a tremendous difference.  Determine the need for coloring – as stages progress this becomes very stressful.  Consider a shorter haircut / style that really helps the grooming process – washing hair etc.  Appointments and styling needs to remain flexible based on the client mood and needs for that day/phase, yet are an important piece of self-image and grooming.

Assist when entering the shower stall and make sure the loved one is aware of the grab bars.  Use a hand-held shower head so you can direct the flow of water to the body first.  Use a moderate/ gentle flow so it is very comfortable for the loved one.  Use a good body wash applied to a loofah or a body poof.  If the size of the shower allows, it is very convenient for you to be in the shower to assist.  If the stall is large enough, have the loved one sit on the shower stool and then can wash the hair. Having a hand held shower head allows a good rinse of body and hair.

Brushing teeth can be difficult as the loved one often wants to bite down on the tooth brush. An option to the standard toothbrush is a child’s all silicone toothbrush.  Use a “children’s toothpaste” which does not have fluoride and can be swallowed without a problem.

Brief and brief pads are a very important part of hygiene, especially in the later stages when incontinence is part of the daily routine. Although adult diapers/briefs do have an absorbent layer, we have found applying an additional maxi pad inside the diaper –  for bladder leaks, during the day and nights really assists between restroom visits.  We have used “Always discreet” underwear maximum with the “Always discreet rapid core pads.”  The pads have an adhesive layer that holds the pad in place in the brief.  There has never been a problem with comfort during the day or night.

Recommend having in the bathroom gloves as well as adult wipes.  An excellent oversized wipe is “TENDER Protect” – premoistened adult wipes – purchased from Amazon.  Note, a separate small wastebasket with a liner should be positioned near the toilet  to accept dirty brief and used wipes. (never flush the wipes down the toilet!)

  – The Bidet Toilet has eliminated the use of toilet paper and does 100% cleaning after urination and a large percentage of the cleaning for bowel movements, The wipes become a way to finalize the cleaning after a bowel movement.  Since beginning the use of the bidet and the wipes.

The bathroom, if large enough, should have an additional shower stool or chair, and be used as the main dressing area where the caregiver can put on the new brief with pad, tops and pants.  In addition, the stool allows the loved one to be seated for brushing teeth, washing face and drying / combing hair.  At night, the bathroom is used for preparing for bed.

If the bathroom is not large enough, a space in the bedroom should be designated for the dressing routine.  A closet should not be used by the loved one to get dressed in the morning or night, even if it is large, because it can create disorientation, distraction, and provide too many choices.