by Bob Hoffmann - updated 10/14/97
Wandering/Applying Technology
- ID Bracelet - Getting a form of identification is always the first thing one should do. We had difficulty finding a smaller bracelet to fit Shirley's wrist, but eventually found one at a pharmacy that could be ordered through a place in Colorado that worked fine. We included name and home phone number on the front, and the address and the words "Dementia" on the back. She has enjoyed wearing the bracelet and frequently looks at it and recites her name.
- Door Alarms - When we needed something to put on our front door to alert us if she decided to go for a walk by herself, I went to Best Buy and bought a battery powered travel alarm that has a handle you can hang over the door knob in a motel, It works from any slight vibration and only cost about $12. I then bought a strip of Velcro and glued it on the back of the alarm and put a corresponding piece at the top of the front door so I could stick the alarm to it. The alarm has a switch that selects a "ding dong" announcement when someone enters, or a shriek alarm signal. We found this very adequate and inexpensive. It occasionally surprises our paper boy when he slams the paper between the storm door and the front door and sets it off.
- Surveillance Camera - Since I spend much of my time in my home office while Shirley rests in bed or listens to TV, I found myself jumping up frequently to go check on her to make sure she was ok, and had not gotten past me to go downstairs or outside. I found a "wireless" surveillance camera and monitor at Best Buy for $299 and bought it. It is made by a company called Smart Choice, and can transmit sound and video up to 125 feet which more than met my needs, and operates on two channels so that you can have two different cameras set up. I have only needed the one camera so far. The monitor (with 5 inch screen) is very easy to pick up and carry to another location. Additional cameras have to be ordered from the company and cost $199. I have the monitor sitting right next to my computer in my office most of the time with the sound turned up so I can hear her if she coughs or chokes. This has been the best investment I have made, as it relieves a lot of stress and worry for me.
- Pager or Cellular Phone - I have found as the disease progresses, that friends and other caregivers are becoming more concerned about staying alone with Shirley while I go to shop or exercise. To help counteract this, I purchased a cellular phone and carry it with me whenever I am out walking or shopping while volunteers are here. It also provides me with an emergency backup as it is portable and I can program in the numbers I may need in case of an emergency.
- Rubber Bands to Counteract Door Locking - Shirley has been locking the bedroom door every time she goes in to rest, and we have always had to find a hanger to unlock it from the outside. This has always bothered us in that we fear that we may not be able to get in the room fast enough if something happens. We discovered that by wrapping rubber bands around the door knob stem, partially covering the area that needs to pushed in and turned to lock it, she can no longer lock the door (patent pending!).
- Door Knob Covers - To prevent Shirley from entering areas of the house that are dangerous, such as the basement, where she might fall down the stairs, we added Grip'N Squeeze door knob covers made by Safety 1st. They are plastic and accordion shaped so once placed over the door knob, they must be squeezed tightly together in order to turn the knob. I had difficulty myself the first time I tried to open the door, and they have proven effective for Shirley. They cost about $1.75 for three of them, and can be purchased anyplace they sell child's safety equipment.
- Expansion Gates - After Shirley began having difficulty climbing the stairs and had fallen several times, I purchased an expansion gate at the Toddlers section in Wal-Mart. Our typical Midwestern two story home has two steps up to enter the bottom (base) of the stair case. The bottom of the banister stops at the second step, so I initially inserted the expansion gate between the banister and the wall on the second step. Shirley's response was to attempt to climb onto the first step and grab hold of the gate, almost falling backwards. I finally discovered that I could wedge in just the top of the gate and let the bottom hang down onto the first step, blocking it. This has worked, and it is wedged tight enough with the spring action that she has been unable to remove it and has quit trying.
Anxiety/Agitation
- Chewing gum has helped occupy or redirect Shirley when she is anxious or agitated. We switched to a sugarless brand and bought it by the case, always keeping a pack available. She would tear off one small piece at a time and chew it, then another until the entire pack was gone. You know the old adage that "you can't chew gum and ........ at the same time". We eventually had to stop giving her gum because as the disease progressed, she began forgetting that she had it in her mouth and would occasionally choke on it.
- Country music has been therapeutic, and a good way to redirect Shirley's attention. We use this when we travel the 5 hours in the car to visit her mother. We play music all the way there. She will sit up and dance around in her seat clapping her hands until she got sleepy. Without it we would not have been able to take those trips. If she gets too anxious, we just crank up the volume and she will get right back into the music. We also use this as a method to get her to exercise in the morning, and have bought an exercise video tape based on country oldies and line dancing. One of her favorite songs has words something like this.. "I'm married to you baby and I don't even know your name.....".
- Walking has been the primary remedy during "sundowning". We have kept up a regimen of walking throughout her illness to keep her physically in good shape, but in particular in the late afternoon when she is most agitated, we sometimes take 3 or 4 walks around the neighborhood until she begins to tire.
- Credit Cards - Super Market shopping with her has been a challenge. In particular during checkout time when I am paying for groceries (writing a check or counting out cash) she will take the opportunity to take off out the door, and it is difficult to hold on to her and conduct the transactions (I have messed up a number of checks trying). The solution for me has been to switch completely to credit card transactions. I find it much easier to hold her hand and work with a credit card at checkout rather than checks or cash. The other helpful hint I discovered was to have her always push the cart, and I make her keep both hands on the cart while we are shopping. It gives her something to do, and she attempts to run off less frequently. At the checkout I give her a bag of groceries to hold as soon as one is packed to keep her busy while I am signing the slip. I also look for gas stations that can process a credit card right at the pump itself (many are converting to this now).
- Thumper Milk Jug - Shirley becomes anxious and bangs her hand on the table when eating, sometimes breaking dishes and glasses. While I am attempting to cook she will also follow me around and slap me on the back (just to have something to do). I found that by having an empty, rinsed out gallon milk jug for her to bang on the counter, she can be redirected to use it which is much safer. I keep one available and sometimes she will go get it, or I will give it to her when she begins to bang a glass or bowl on the counter. She seems satisfied to "Thump" the counter with the milk jug which safer for all of us. She also uses it to thump on my back when I am slow in preparing meals.
Activities
This is an area in which I have not done very well. Shirley's rate of decline has made it difficult to organize things that she can and will do. I have investigated the two day-care centers in town but I did not find either to be suitable for someone her age and at her activity level. I felt that the facilities at Kensington Cottages (an ALF) offered the correct environment for her, but they do not currently offer activities except to residents, and have a requirement for being 60 years or older to join the "club".
- Walking is the primary activity of the day, with a late morning walk of about 2 miles around a small lake in the middle of town. Three or Four more walks around our neighborhood usually take place during the afternoon (about 1 mile each), and then there may be others during the sundowning period.
- Cutting Coupons - We have attempted water paints and crayons, with coloring books, but have not been consistent in setting up times to do this, and she has not reacted. We have been successful in getting her to cut out coupons and now make sure we have a stockpile for her. When we do this with her, we ensure that she cuts on the dotted lines, and have different spots on the table for the coupons and the paper scraps, as she will frequently just start cutting up the papers.
- Rides - Trips to the Mall - Shirley likes to go for rides in the car, and we take several short trips a day. We went to the mall frequently and would eat Chinese at the food court, but recently, this has become too difficult with her level of agitation, so now we just take walks inside the mall and get takeout to bring home to eat. In the mid afternoon after a walk around the lake, or in the evening, we will take a long ride around the city after stopping at the Dairy Queen to pick up a yogurt cone. She looks forward to these rides and listening to (what else?) country music.
- Photo Album - We have created and maintained a photo album with pictures of Shirley from the time she was very young up to the present. This includes many family photos. We go through the album periodically as an activity and try with her to identify as many of her relatives as possible at different ages. This is also used as a social catalyst when her friends come to visit her.
- Humor - Red Clown's Nose - We try to keep as much humor in Shirley's life as possible, and one technique was shown to us by "Nurse Heart" who frequents a number of AD seminars in the Midwest. She passed out red rubber clown's noses to the audience. I brought mine home and put it on in the evening, and let Shirley "discover" it. She laughed and tried to pull it off, and would chase me around the house.. Sometimes she would try to put it on. This technique has created many hours of laughter and fun (until we finally lost the nose).
- Activity Tablecloth or Apron - I saw this mentioned on the Internet. It is a tablecloth that has pockets, zippers, snaps, buttons and button hole tabs, ties, and varied colored cards and other items in the pockets. They can take the items out and put them back into the pockets. I noticed that Shirley, while riding in the care, would always open and close the glove compartment, take out the folder with all the car manuals and papers in it, pull out all the papers and then try to put them back in. She would do this over and over while we were driving around. The activity tablecloth is an extension of this.
Ease of Care/Appearance
- Pixie Hair Cut - After having some difficulty keeping Shirley's hair looking nice after washing, we finally had it cut in a shorter "pixie" style which looks cute, yet is easy to get trimmed and maintain. We used to always try to catch "Cost Cutter" when there was no waiting, but have since paid a girl to stop by the house on her way to work once a month and cut Shirley's hair.
- Flexible Shower Hose - As has frequently been recommended, we replaced the shower head with a flexible hose and head that fits on a bracket so it can easily be adjusted to any height. This solved most of the early fears she had of showering and adjusting the temperature. I always adjust the temperature before she gets in and lower the shower head for her. I would recommend that you purchase one that has an easy to use shut off switch on the handle, as it makes things easier as the disease progresses and the caregiver has to wash the patient. To find one with a shutoff switch on the handle, you may need to look in a catalog or store that handles health products.
- Simplified Makeup Kit - As her ability to put on makeup and face cream became more difficult, I finally had to dump most of what she had on her vanity, and I replaced it with a simple makeup kit that had the several items that she uses (at this time she no longer is able to use it). This made it easier for me to pack for her when we traveled to visit her mother.
- Standardized Outfits - To simplify dressing and general clothing maintenance, we discarded most of her clothes (we are now charter members of the local Good Will store), with the exception of several jogging outfits. We added to this as the seasons changed, but purchased outfits which were easy to put on and wash. This made it easier washing, packing for travel, and made it easier for her to select her own clothes while she was still able.
- Aprons for meals - As I was having increased difficulties at meal times and protecting her clothes with a towel on the lap was no longer effective, I asked her mother to make her several full body aprons. These have been effective in protecting her clothes, and look nice on her. She enjoys wearing them and tying the bow with the strings which she can still do. I have several since they only last a day before needing to be washed.
- Drinking Straws - I found that using straws with drinks has reduced the opportunity for choking, and helps her take more liquid. I have begun making "Fruit Shakes" for her to drink and she will drink a large full glass easily now without a problem. I use these for everything from getting drinks of water or soft drinks to milk shakes. She seems to like them and they work. I buy the ones with the flexible neck that can be bent at an angle to make it easier for her to keep in her mouth.
- Super Piks for Dental Care - Since it is becoming more difficult to help her floss, I have been concerned about her dental hygiene. We are about to the point where the dentist will not take her anymore. I found something called "Super Piks" which are plastic picks, with a hook on one end, that can be used to easily clean between the teeth and massage the gums. They are very effective and easy to use since she does not have to have the mouth wide open all the time as with floss.
Communications - Friends, Relatives, Support and Respite
- Letters are important to communicate to relatives and friends exactly what can be expected from the dementia victim. We sent a letter to out-of-town family and close friends so they would not be surprised when they called her. We actually had two unfortunate incidents prior to this where friends had called and were quite surprised and upset to find her condition. We also sent a letter to close friends in the city thanking them for their support and also explaining her condition and what could be expected. It is important to keep this connection with family and friends, and we found the letters to be an important part in keeping this open communication.
- Living in the Labyrinth - We found that sharing this book with friends was an excellent way to communicate what Shirley was going through since it was written by a woman in her late forties that has Alzheimer's disease. It also helped us understand and better cope with her actions. This book is referenced in the section titled "Favorite Reading Material and References".
- Home Health Agencies - We have had limited success with Home Health agencies, but they are a source of support when you have your back up against the wall (and a few extra $$$ to spend). Now in the later stages of the disease, we have a Nurse come once a month to check vital signs and do general assessment. It also allows me to ask questions. Insurance/Medicare has covered this so far.
- Share a Home - I tried having a young nursing student live in our house in exchange for respite time, and some light housekeeping. Due to Shirley's rapid decline and the general stress introduced by having a "stranger" in the house, this did not work out and was terminated. Still, it is a viable option for some homebound caregivers if you can find the right person.
- SAIL - Seniors Agenda for Independent Living is an organization in Minnesota that organizes volunteers to (among other things) give respite to caregivers in the home. I have been able to obtain some help through a volunteer that will come once a week in the morning to allow me to get out and exercise. This along with several of Shirley's friends that have scheduled time to come periodically during the month, allow me to get to support groups and do necessary shopping. Supporting these organizations that organize, train and make volunteers available to the homebound for respite is very important and could be the best investment you could make with your tax dollar. PLEASE SUPPORT IT!!
- E-mail and Online Support has become extremely important to me, as I have established a number of friendships with other caregivers around the world. For someone that is a full-time caregiver, I believe this is critical to maintaining their emotional health, as it is often difficult for them to get out to support group meetings or to have interaction with friends as they are normally accustomed.
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