This is the 17th in a series of articles written by Frank S. P. Yacino regarding Alzheimer’s disease. He is the husband and caregiver for his wife Barbara who has been struggling with this disease for over fifteen years.
If the family and caregiver of an Alzheimer’s patient have elected to provide home care there will be an array of medical supplies, personal supplies, and equipment that will be needed for the patient. This article will describe what has been required for Barbara over the years.
The first item of equipment that we received was a chair to put in the shower for bathing Barbara. At this time Barbara was very unsteady on her feet and could not be showered standing up. On March 23, 2010, the aide began using a chair in the shower stall to sit Barbara on to bathe her and this practice lasted until November 15, 2011. The next day Barbara began being showered at the Day Care program she was attending. Her last shower at the Day Care was on August 28, 2012, which was her last day at the program. (Her bathing now is discussed in a later paragraph of this article.)
The second item we received was a portable commode on August 16, 2010. We had this product here at the house for over a year before we really needed it, which was on November 11, 2011. This is when Barbara could no longer walk and we required a lift to move Barbara around the house. (The lift is described in the third paragraph after this one.) Unfortunately our bathroom was not designed or built with the handicapped code in mind and the lift could not maneuver into or around in the bathroom to seat Barbara on the commode. We then brought the portable commode into our living area where the lift could function as it is intended for this type of situation. The commode we are using has arms on it and a removable bucket for disposal of any urine or bowel movement in the bathroom toilet. One caution I have for the emptying of the bucket is to be aware of the amount of bowel movement in the bucket, along with the toilet paper, to be sure that when emptying it into the house toilet you do not cause a back-up to flood the floor of the bathroom. I had to learn the hard way. I only allow two wipes with the toilet paper to go into the bucket, the rest go into a plastic bag in the wastebasket, then into the trash.
On September 22, 2010 we received a raised toilet seat with arm rests, and a transport chair, which is similar to a wheelchair but has four small wheels versus the two large wheels on the side of the chair and two small ones in front. The transport chair is easy to get around with both in and out of the house. The raised toilet seat makes it easier for the patient to sit at a higher level and not have to go down so far. Barbara had gotten to a point where she would just drop herself down and with dead weight actually broke the raised knobs under the existing toilet seat twice and I had to replace the seats.
On July 6, 2011 we received a hospital bed with rails and a mattress. The entire bed rises vertically and it also has provisions for the head and foot of the bed to rise up individually. Little did we know at that time that raising of the head and foot of the bed, would be critical to Barbara’s recovery from her blood clot operation where it was necessary to raise both ends of the bed to help with the circulation of blood in her legs to the heart.
On November 11, 2011 we received an electric lift, called a Sara-lift, to move Barbara around the house and a lightweight wheelchair with the larger wheels on the side. The lift was requested by me because it got to a point where I could no longer lift Barbara to toilet her, get her into bed, or get her into the vehicle for fear of hurting my back. If that were to happen I would probably not be able to continue having Barbara at home. So this has been a very valuable piece of equipment in our household.
On November 16, 2011, we received an air mattress for the bed with its own individual pump to inflate the mattress. It is only inflated when the bed is to be in use, which in our case was at night for Barbara to go to bed. We turn the pump on a couple of hours before bedtime so that it will be inflated for use. (We now feed Barbara her breakfast in bed each morning. Over time Barbara has lost the use of her neck muscles and cannot keep her head up straight. However in the morning, by raising the head of the bed up to about a 45 degree angle we are able to feed her easier than when she’s in the recliner or transport chair, which we did for over a year. See two paragraphs below to learn what we do now.)
On November 23, 2011, we received an electric recliner chair that rises up and down to make it easier for Barbara to get into and out of the recliner from the lift. We also received two bed rails that were longer than the original rails that came with the hospital bed. These extended rails were to help prevent Barbara’s legs from hanging off the edge of the bed. We now put a pillow there so her legs won’t go between the rails.
On September 19, 2012 we received a new tilt-back wheelchair for Barbara. It was hoped that this would help in getting her to relax her head when the chair was in the lowest tilt position, as her neck muscles are very tight and her head leans to the left. To date this has not happened; however, we have found that it is easier to feed her in this chair versus the recliner chair. Barbara now has her lunch and dinner meal in the tilt-back chair. Of course it is not in the furthest tilt position or she wouldn’t be able to swallow.
Now to mention some of the supplies that will be needed with the patient at home. During the early stages of Alzheimer’s the patient may still be able to toilet themselves, but as the disease progresses they will become incontinent. This will now mean that they will require the use of undergarments such as briefs (pampers). Depending on the severity of the incontinence the patient may also require the use of pad liners within the briefs. The incontinence will also start the need for skin care of the patient to avoid breakdown and sores. We have been using Vitamin A & D ointment for this.
In order to keep the patient’s bowel movement regular the caregiver may need some type of fiber supplement, such as NutriSource Fiber manufactured by Nestle, Miralax, or other prescription from the doctor. This supplement can be mixed in whatever liquid the patient is drinking, or it can be mixed in their meal.
At some point the patient may have difficulty swallowing liquid. This will require the use of a nectar thickener called Thick & Easy, manufactured by Hormel, added to any liquid that you may be giving the patient.
The patient may have difficulty swallowing food. In May of 2009 I began to puree Barbara’s food because she used to “pocket” her food in her left cheek and it was like a small meatball. Had she tried to swallow the whole parcel of food she would have choked. This led me to the blender and for her dinner meal each night since then I have blended her food and she has no issue swallowing at this time. As her disease progresses there will come a time when she will be unable to swallow anything.
If the patient is unable to use the shower or bathtub it will be necessary to give the patient a “sponge bath,” usually in bed with the patient laying down. The patient will have to be turned and rolled in order to wash the entire body. The cleansing of the buttocks area and the groin area are very important as that is where the most bacteria is generated on a person and Urinary Tract Infections are common with those who are incontinent. In these two areas it is best to use a multi-purpose Aloe Vista Perineal Cleansing Foam manufactured by ConvaTec to clean on a daily basis.
After toileting of the patient it is recommended that the caregiver use hypoallergenic wipes. I happen to use a product called Equate, which can be purchased at Walmart. There are many other brands sold in pharmacies, such as Huggies and many pharmacies have their own brand of wipes. The important matter here is to try to prevent as much bacteria as possible in the two areas being cleansed.
And last but not the least of supplies for home care is toilet paper. We toilet Barbara five to six times a day and sometime a roll only lasts a day and a half.
I hope the above information will be an aid to those contemplating keeping a loved one at home. I know that this disease is a struggle for all of you caregivers and having an idea of really what goes into keeping a loved one at home is not known when the decision is made to stay home or place the patient into a long term care facility. The above is what our family has seen and learned over the past fifteen years. It’s not easy and if you decide on home care be sure you have the proper head-set to cope with all the idiosyncrasies that the patient will toss at you for an unknown length of time.
(The Alzheimer's Caregiver Support Group will meet every second Monday of the month from 6:15 p.m. - 7:45 p.m., at the Accord Adult Daycare Center, 10 Cudworth Road, Webster.)