This is Number 19 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.

One of Barbara’s unhealthy and unsanitary habits that she developed about mid-stage of this disease was to touch her feces when she was still able to go to the bathroom alone. I would see signs of this on the shower curtain and the walls. She would do it at night in bed and wipe her hands on the sheets and side of the mattress, which I wouldn’t see until   the morning. If she were lying on the couch during the day and evening she’d wipe her hand on the back of the couch or side. I used to put towels there to protect the furniture. She was so fast in doing this that it was almost impossible to catch her in the act. It seemed that when I would leave the area she’d get the urge to put her hand down her pants and wipe the feces wherever she was.

This went on for some time and it finally became necessary to start using pampers and I started to toilet her each time she had the need to go to the bathroom. Even at that she would try to touch the feces in her pamper as I would pull it down. I can recall one day when she actually put her fingers in her mouth with feces on them when I turned to get something out of the closet. In a split second it was done and I attempted to get as much out as I could with a tissue. From that time on I was very diligent in watching what she would do when I toileted her. This situation was one of the many phases that a patient may go through. I have heard from other caregivers that their patients have had the same issue that Barbara had, but they do get out of the phase at some point in time. Recall my statements in earlier articles that all patients are not exactly the same, so what may happen to some may not happen to others. Many stories are told at out Support Meetings of the caregiver’s experiences that are similar to the situation someone else may have.

Another unhealthy trait that is difficult for us to deal with is that of brushing Barbara’s teeth. When the toothbrush is placed in Barbara’s mouth she has a tendency to want to bite down on it and of course this becomes a problem brushing with her mouth closed. Barbara has not been to a dentist since 2004 and her not being able to speak to alert us to any issues with her teeth makes it important that we at least try to brush them once a day. For a period of time after being diagnosed she was still able to take care of her brushing. I had purchased a battery powered brush and she enjoyed the vibration and noise it made. When she stopped using the brush she’d let me do it for her and that lasted a few months. I also used to be able to floss her teeth at night, mid-2008, with the little plastic floss picks while she was lying on the couch and then that stopped because she’d bite down on the plastic.

So, the challenge was before us-----how can we brush her teeth. If you have been a follower of these articles you may remember me mentioning an item that we discovered, while attending a Support Group meeting in the third paragraph of Article 3, and that was a Chewy Tube. Barbara would always bite on a pencil or a pen when doing her word-find puzzles, a habit that is called Oral Fixation. So we purchased these Chewy tubes for her to bite on like a baby would do with a pacifier. Well now we are using it each day to help in brushing Barbara’s teeth. The Chewy Tube has a hole in one end that will fit over a pen and we put that into her mouth the same time we put the toothbrush in. As Barbara chomps down on the pen we have enough room to move the brush around in her mouth to do the best we can with the brushing. It’s probably not the best of hygienic methods but at least we are getting toothpaste on her teeth and trying to get what food is there off the teeth.

Barbara has all of her natural teeth so of course the issues we are describing here certainly would not apply to someone who has dentures.

A trait that Barbara had that was certainly unsanitary by normal standards was to go into restrooms when we were traveling and go through the trash bin. The first time that I noticed this, as she was still able to toilet herself at this time, was when we were going to Maine and had stopped at the Chelmsford rest stop on Route 495. When she came out of the restroom she had a magazine, which I don’t know where she got, and it was stuffed with some unknown material. She sort of hid it under the seat and when we got to Kittery I decided to park the car as far away from the Trading Post as possible. Barbara liked to walk so when we got out of the car I suggested that she take a little walk and I’d catch up with her. With her back toward me, I went to look at what she had put under the seat. What I found wrapped up in the magazine were seven tampon holders. I had a pair of gloves in the car so I carefully removed the contents of the magazine and disposed of the items, along with the magazine, never to be seen again. When I caught up with Barbara I didn’t say a thing about what I had found or done with them. When we got back to the car she looked under the seat but never said a word about the magazine not being there. I lucked out on that experience without a confrontation.

So from that time on, whenever we would travel and Barbara had to use the restroom I would ask someone to keep an eye on her in the restroom and I explained why. We were at an Olive Garden restaurant in Manchester, Conn., one day and Barbara wanted to go to the restroom before we left. I asked the hostess if she would go in with Barbara and again explained why and when I did she said, ”I’d be glad to do that and I’ll bring in a clean trash bag and remove the old one before she gets to it. My grandmother was like that.” No matter where we traveled and I’d ask someone to help me no one ever refused and several of them knew what was going on because one of their family members was also afflicted with Alzheimer’s disease.

Barbara also liked to pick trash up off the ground, including gum. This was very unsanitary to say the least. Other items were stones, elastic bands for pony tails, any kind of trash, paper clips, washers, pins, jewelry, pieces of glass, etc. I still have some of that trash in a jar at home.

Barbara had no control over these idiosyncrasies; this disease was tormenting her and making her do things that she never did before.

(The Alzheimer’s Caregivers Support Group meets every second Monday of the month from 6:15 p.m. to 7:45 p.m., at the Accord Adult Daycare Center, 10 Cudworth Road, Webster.) 

 UNHEALTHY AND UNSANITARY TRAITS OF THE PATIENT

This is Number 19 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.

One of Barbara’s unhealthy and unsanitary habits that she developed about mid-stage of this disease was to touch her feces when she was still able to go to the bathroom alone. I would see signs of this on the shower curtain and the walls. She would do it at night in bed and wipe her hands on the sheets and side of the mattress, which I wouldn’t see until   the morning. If she were lying on the couch during the day and evening she’d wipe her hand on the back of the couch or side. I used to put towels there to protect the furniture. She was so fast in doing this that it was almost impossible to catch her in the act. It seemed that when I would leave the area she’d get the urge to put her hand down her pants and wipe the feces wherever she was.

This went on for some time and it finally became necessary to start using pampers and I started to toilet her each time she had the need to go to the bathroom. Even at that she would try to touch the feces in her pamper as I would pull it down. I can recall one day when she actually put her fingers in her mouth with feces on them when I turned to get something out of the closet. In a split second it was done and I attempted to get as much out as I could with a tissue. From that time on I was very diligent in watching what she would do when I toileted her. This situation was one of the many phases that a patient may go through. I have heard from other caregivers that their patients have had the same issue that Barbara had, but they do get out of the phase at some point in time. Recall my statements in earlier articles that all patients are not exactly the same, so what may happen to some may not happen to others. Many stories are told at out Support Meetings of the caregiver’s experiences that are similar to the situation someone else may have.

Another unhealthy trait that is difficult for us to deal with is that of brushing Barbara’s teeth. When the toothbrush is placed in Barbara’s mouth she has a tendency to want to bite down on it and of course this becomes a problem brushing with her mouth closed. Barbara has not been to a dentist since 2004 and her not being able to speak to alert us to any issues with her teeth makes it important that we at least try to brush them once a day. For a period of time after being diagnosed she was still able to take care of her brushing. I had purchased a battery powered brush and she enjoyed the vibration and noise it made. When she stopped using the brush she’d let me do it for her and that lasted a few months. I also used to be able to floss her teeth at night, mid-2008, with the little plastic floss picks while she was lying on the couch and then that stopped because she’d bite down on the plastic.

So, the challenge was before us-----how can we brush her teeth. If you have been a follower of these articles you may remember me mentioning an item that we discovered, while attending a Support Group meeting in the third paragraph of Article 3, and that was a Chewy Tube. Barbara would always bite on a pencil or a pen when doing her word-find puzzles, a habit that is called Oral Fixation. So we purchased these Chewy tubes for her to bite on like a baby would do with a pacifier. Well now we are using it each day to help in brushing Barbara’s teeth. The Chewy Tube has a hole in one end that will fit over a pen and we put that into her mouth the same time we put the toothbrush in. As Barbara chomps down on the pen we have enough room to move the brush around in her mouth to do the best we can with the brushing. It’s probably not the best of hygienic methods but at least we are getting toothpaste on her teeth and trying to get what food is there off the teeth.

Barbara has all of her natural teeth so of course the issues we are describing here certainly would not apply to someone who has dentures.

A trait that Barbara had that was certainly unsanitary by normal standards was to go into restrooms when we were traveling and go through the trash bin. The first time that I noticed this, as she was still able to toilet herself at this time, was when we were going to Maine and had stopped at the Chelmsford rest stop on Route 495. When she came out of the restroom she had a magazine, which I don’t know where she got, and it was stuffed with some unknown material. She sort of hid it under the seat and when we got to Kittery I decided to park the car as far away from the Trading Post as possible. Barbara liked to walk so when we got out of the car I suggested that she take a little walk and I’d catch up with her. With her back toward me, I went to look at what she had put under the seat. What I found wrapped up in the magazine were seven tampon holders. I had a pair of gloves in the car so I carefully removed the contents of the magazine and disposed of the items, along with the magazine, never to be seen again. When I caught up with Barbara I didn’t say a thing about what I had found or done with them. When we got back to the car she looked under the seat but never said a word about the magazine not being there. I lucked out on that experience without a confrontation.

So from that time on, whenever we would travel and Barbara had to use the restroom I would ask someone to keep an eye on her in the restroom and I explained why. We were at an Olive Garden restaurant in Manchester, Conn., one day and Barbara wanted to go to the restroom before we left. I asked the hostess if she would go in with Barbara and again explained why and when I did she said, ”I’d be glad to do that and I’ll bring in a clean trash bag and remove the old one before she gets to it. My grandmother was like that.” No matter where we traveled and I’d ask someone to help me no one ever refused and several of them knew what was going on because one of their family members was also afflicted with Alzheimer’s disease.

Barbara also liked to pick trash up off the ground, including gum. This was very unsanitary to say the least. Other items were stones, elastic bands for pony tails, any kind of trash, paper clips, washers, pins, jewelry, pieces of glass, etc. I still have some of that trash in a jar at home.

Barbara had no control over these idiosyncrasies; this disease was tormenting her and making her do things that she never did before.

(The Alzheimer’s Caregivers Support Group meets every second Monday of the month from 6:15 p.m. to 7:45 p.m., at the Accord Adult Daycare Center, 10 Cudworth Road, Webster.) 

This is Number 18 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.

Even though the patient has Alzheimer’s we as caregivers cannot neglect their diet and food intake. Proper nutrition can help to prevent other medical and health issues. In this article we shall discuss how we have tried to keep Barbara healthy from a nutrition point of view.

Prior to Barbara becoming caught up in this disease we used to eat out frequently. Barbara enjoyed seafood such as lobsters, fried clams, French fries, fried onion rings, fish and chips, fried calamari, and many kinds of fish cooked in different ways, be they fried, broiled, or baked. Much of this was restaurant food and generally salty, greasy, and not always cooked with good health in mind. In November of 2002 I required prostate surgery and I weighed two hundred and two pounds. This was about the time that Barbara started to show strong signs of her dementia, so-called at that time, and she weighed about one hundred forty pounds. Her married weight in 1957 was one hundred eight pounds and mine was one hundred fifty-five pounds. The bright light went off in my head saying this is crazy for both of us so I decided it was time to stop going out to eat during the week and on weekends and start cooking at home. We stopped all fried and greasy foods completely. Over the period of the next couple of years I lost forty-two pounds and Barbara lost twenty pounds. I believe that the bulk of that weight we lost was from the fried foods. Barbara starting walking at the walk path at Memorial Beach in Webster and I began riding a stationary bike at home each day for four miles, which I’m sure also helped.

We stopped eating all beef products and turned more to chicken, turkey, pork, fish, and ham occasionally for the holidays. Primarily we have meatloaf, stuffed peppers, shepherds pie, spaghetti and meatballs, fish, scallops, and soups made at home from chicken or turkey bones. All of the ground meat is turkey burger which is 93/7 for fat content, for any of the main dishes. We also on occasion have buffalo meat in the form of a roast, stew meat, or burgers. The meat is lean and has less fat content. Fish can be a variety of salmon, halibut, fluke, striper, cod, or flounder. The meals are prepared either on the stove-top, in the oven, microwave, or crock pot. Side dishes consist of vegetables such as carrots, beans, peas, broccoli, cauliflower, corn, potatoes, rice, or squash.

I try to buy as many of the vegetables, if canned, with no added salt. I do not use any salt in any of the cooking I do at the house nor do we salt any of the food we eat. It’s my opinion that there is enough natural salt in all the other products that we eat.

When I cook anything requiring oil, which is not too frequent, I use the Smart Balance brand. I also use that brand of light butter, peanut butter, mayonnaise, and spray oil. For cheese I use the Smart Beat brand which is fat, cholesterol, and lactose free. I continually watch for fat free and low cholesterol products. When I buy Town House crackers, Wheat Thins, or Triscuits for myself, and Barbara her Vienna Fingers, they are all reduced-fat. I also purchase reduced-fat grated cheese for use on spaghetti or other foods.

With all of the above said, two of Barbara’s meals are the same every day. She used to eat this way prior to her disease and I’ve just kept the same schedule that she had. Her breakfast consists of a cup of Cheerios with Lactose milk, a cup of tea, and a half cup of cranberry juice. Prior to Barbara waking up I put milk into the bowl of Cheerios to soften the cereal for her. She is able to chew it easier in this manner. The juice is used as an aid to help as a preventative for a UTI (Urinary Tract Infection).

Her lunch consists of two graham crackers with marshmallow and peanut butter pre-mixed with applesauce. The applesauce is to give the peanut butter a looser consistency. She then has one Vienna Fingers cookie. I break up the graham crackers into small pieces and Barbara takes two or three bites out of that piece. This way she is able to chew it slowly and not gag. After each small piece, which is about an inch square, I give Barbara some milk to help “wash it down.” In this manner she will consume one or two glasses of her Lactose milk.

The dinner meal, which we both share, can consist of any of the items I mention six paragraphs above. The dinner meal for Barbara has been blended since May of 2009. In the early stages of Barbara’s disease I used to cut her meats and other food up into small pieces, but it got to a point where she would chew her food into a round ball and pocket it into her left cheek. I had a fear that if she swallowed that ball of food it would choke her. No matter what the main meal is, it goes into the blender with the vegetables or other side dish that is prepared, and I also add a slice of wheat bread as well. I use water as a liquid for ease in blending all of the food to a pasty consistency. I feed Barbara about a half teaspoon at a time and each meal takes about forty minutes to feed her. She has a glass or two of the Lactose milk and usually a half cup of yogurt, which is another aid to help counteract a UTI, or I give her some other after dinner foods such as jell-o, chocolate pudding, peaches, angel cake in a bowl with milk to make it soft, or a little applesauce.

Prior to going to bed each night Barbara has a half cup of a smoothie which I make for her. It may consist of apples, pears, peaches, plums, bananas, grapes, melons, strawberries, blueberries, or yogurt. For a liquid I use cranberry juice or orange juice. All of the ingredients are very healthy for Barbara. The smoothie also helps to keep Barbara’s digestive system working properly so that she does not get constipated. In her state of mind now and not being able to speak, she cannot tell me if she’s constipated and ask for a laxative to help move her bowels. The process that I am using now takes care of this issue.

Protein is an important factor for the patient’s well-being. For a 2000 calorie diet one should have about 50 to 60 grams of protein per day. Other vitamins are essential and the patient or caregiver should consult with the doctor for the needs of each individual.

(The Alzheimer’s Caregivers Support Group meets every second Monday of the month from 6:15 p.m. To 7:45 p.m., at the Accord Adult Daycare Center, 10 Cudworth Road, Webster.) 

This is the 17^th 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.)

By Frank S. P. Yacino

This is #16 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.

During the early stages of dementia and Alzheimer’s the patient still has some control of their bowels and urine, know when they have to go, and how to take care of themselves. They will still be able to wear normal undergarments and have the ability to dress by themselves. Somewhere between Stages 6 and 7 the patient may develop incontinence. At this time, it will be necessary for the caregiver to start using undergarments (pampers or briefs) and liners for the patient. This could also be the turning point for some caregivers where they may begin to think about putting the patient into a long-term care facility if they feel unable to cope with the incontinence of the patient. If the intention is to keep the patient at home for as long as possible, as we have done with Barbara, then I can assure you, the caregiver, that this will be a long, difficult time of providing care to the patient. Barbara’s incontinence began in December of 2006 and we have dealt with it every single day since then.

This is number 12 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.

The accounting of this infection which will be given is how it affected Barbara and how I was able to detect that she had a UTI (Urinary Tract Infection) and what we did to make her better. (If anyone would like more detailed and professional information on this subject I would suggest that you go on-line to Webmd/UTI.)

This infection is quite prevalent in women, although men are also susceptible to a UTI as well, whether they are living a “normal” life or sick with a disease like Barbara has. From what I’ve been told and read about the UTI, it’s very painful and one may feel a burning sensation when urinating. Unfortunately Barbara, being non-vocal now, is unable to tell me that she is in pain when this has occurred to her over the past several years. During our married life she never spoke about this issue happening to her, nor did I ever know her to be on an antibiotic for this infection.

That said I’ll go back to the first time that I was introduced to the UTI. This happened on December 18, 2008 and I soon became well versed on its symptoms and how it affected Barbara. At this time Barbara had been in pampers (briefs) and pad liners for two years and when I would change her I was well aware of the amount of urine that there was in the pad liner each time. Over the course of the years I have learned to watch for several tell-tale signs that have helped me to detect that Barbara may have a UTI.

The first sign which I mentioned in the previous paragraph is the amount of urine in her pad liner. Barbara usually is in bed at night for up to thirteen hours so in the morning her pad should be very wet and heavy. On some of the mornings she would be dry. Then her demeanor would drastically change, she’d become lethargic and moody. Once these symptoms occurred I knew something was not right and would send a urine sample to the Day Care for testing. If the urine is dark, cloudy, and smelly that’s another sign of a UTI.

When Barbara went to Day Care on December 15^th the staff took a sample of Barbara’s urine to test for infection. On December 18^th I was officially notified of the infection, as it usually takes a couple of days to do the testing. If it’s positive, medication is then prescribed for that particular type of infection. The length of time for the medication is determined by the particular “strain” of the bacteria and one medication does not treat each “strain”. Below is listed each time (month/day/year) that I was notified that Barbara had the infection after testing was done and the length of time that she was on the medication. You will notice that the length of time varies based on the “strain” of the infection.

December 18, 2008, on medication for ten days

September 8, 2009, on medication for ten days

November 11, 2009, on medication for three days

February 17, 2010, on medication for three days

July 9, 2010, on medication for five days

August 19, 2010, on medication for seven days

October 21, 2010, on medication for five days

January 13, 2011, on medication for three days

August 17, 2012, on medication for five days

October 21, 2012, on medication for seven days

After the first three UTI episodes, I spoke to the medical staff at the Day Care and it was recommended that Barbara be put on a low-dose antibiotic pill. On November 12, 2009 we began that regimen and it continues to this day. Even though Barbara has had seven UTI episodes since then, one within six weeks, the time from January 2011 to August 2012 was UTI free and we were pleased with the length of that time span. As you can see, within two months of the August episode we had another one. We do our best to help prevent these situations from happening but we just never know when they going to develop.

At one point in time we used baby powder to try to keep Barbara dry whenever we changed her pamper and pad. When I mentioned this to the Day Care medical staff I was advised not to use the powder at all in the groin or buttocks area, but to use Vitamin A & D ointment on the skin. We now use this ointment on a daily basis at each change of the undergarment. The ointment also helps to keep the skin smooth and helps to avoid sores on the skin.

When Barbara had her UTI on August 17^th, I went to the pharmacy to pick up the antibiotic medication and I mentioned to the pharmacist that I usually give Barbara a smoothie each night before she goes to bed. She asked me what I put in the smoothie and I told her blueberries, strawberries, grapes, bananas, apples, pears, peaches, and cranberry juice. She immediately advised me not to give Barbara the smoothie until she had finished that particular antibiotic medication as there could be an adverse reaction between the berry products and the medication. That was important information for me and saved having any complications develop with the medication. I certainly recommend that with any change of medication you speak with the pharmacist about the reactions the medication may have with other medications the person is already taking, or foods that should not be given to the person.

So, are there any other ways which may help deter these infections? On a daily basis Barbara drinks a half glass of cranberry juice and after dinner she has a half cup of yogurt. We also give her water during the day to keep her hydrated. The more liquid that she ingests the more her urine will be diluted and aid in flushing out any bacteria she may have. And finally, be sure to check with the person’s doctor for any other suggestions that may be worthwhile.

This is the 11th in a series of bi-weekly 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.

Some of what you will be reading in this article may or may not apply to your particular loved one with Alzheimer’s. Once again I reiterate that these are our experiences with Barbara and how we dealt with it.

Barbara enjoyed walking from the time we first met so during her on-set of dementia she was still able to leave the house for a walk in the neighborhood or go as far away as a mile and still be able to find her way home. Many times she’d take the car and go to the walk-path at Memorial Beach here in Webster and I had no reason to doubt that she would find her way home. I would even join her in walking if I wasn’t working.

As Barbara’s dementia progressed she had the habit of just wandering out of the house at anytime. I had spoken too many of our neighbors and advised them of Barbara’s condition and to be aware in case they saw her doing something inappropriate, such as putting things in her mouth off the street or touching things she shouldn’t.

On two separate occasions Barbara left the house, once while I was working downstairs and once when I was vacuuming. Both times when I couldn’t find her in the house I ran outside to the street and looked both ways. Each time she left she went to the left of the driveway and both times a neighbor had her by the hand and was leading her back to our house. I was lucky that she was still in the neighborhood when I realized that she was missing and that the neighbors knew what to do.

One afternoon when I came home from work Barbara was nowhere to be found in the house or yard. I had driven on the streets to our house coming home and did not see her walking anywhere. I was now in “panic mode.” She could be anywhere in or out of our neighborhood. I frantically got back in the vehicle and took off like a madman, not knowing whether I would find Barbara or not. I drove through all the streets in our area and she was nowhere to be found. I went as far away as a mile and a half away from the house with no luck. On my way back to the house, about three quarters of a mile from home, I spotted Barbara coming out of a wooded area. My first emotion was relief, but a little bit of anger got mixed into that emotion. I scolded her for leaving the house and she showed no emotion whatsoever, because she didn’t understand that what she did could have ended up in a tragic situation. Bottom line though, I was very happy to see her unharmed.

In the sixth article of this series, Safety of the Patient, we discussed two safety items that pertain to “wanderers”, and we’ll re-emphasize them again in this article in case you missed it, those being the Medic Alert Medallion (1-800-363-5985) and the Safe Return Medallion (1-888-572-8566). Both will help authorities in case the patient gets lost or is in an auto accident. By calling those numbers you can enroll your patient for those medallions in case of an emergency. Hopefully they may never be needed, but it will give the family members a sense of safety and security. (Other methods of safety for the patient were also covered in the sixth article.)

As a caregiver you must always be aware of where the patient is in relationship to where you are in the house or outside. As long as the patient can walk they pose a threat to leave whenever the spirit moves them. They will have no sense of direction or time. They could wander during the day or at night.

Depending where the patient lives additional safety issues may require attention. If the patient lives near a river, pond, or lake the hazards could be much greater. Living in the city with all its traffic is another area of concern. The patient may have no realization of safety in crossing the street. For an Alzheimer’s patient the dangers are everywhere and the caregiver must shoulder the responsibility of securing the patient’s safety.

Barbara does not walk anymore so she is not a threat to wander, as that phase of her disease is behind us, but we did have some scary moments for a couple of years. Though that is behind us we now have concerns about the next chapter in her decline. I encourage all caregivers to monitor your loved one very closely and to appreciate and help them as they move from one stage to the next. They will not understand the changes their mind is going through. It won’t be easy, but you will somehow be given the strength to do all that is necessary for your loved one, whether at home or in a long term care facility.

This is the tenth 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.

Over the years of speaking with caregivers who take care of an Alzheimer’s patient I have found that the patients seem to fit into two categories. They are either passive or aggressive. What does this really mean?

One of the meanings by which Webster’s Dictionary describes the word “passive” is “offering no opposition or resistance, submissive, yielding, patient.” This type of Alzheimer’s patient offers all of those characteristics. Each one of those descriptive words has applied to Barbara over the years. During early on-set of the disease she would sometime get angry with herself because she did not understand what was happening to her memory, nor did I. We would get angry with each other, but not to the point of any violence or physical contact. Throughout our married life Barbara was always the calm and collected one when difficult situations arose.

When Barbara first started to go to Day Care she was hesitant to get on the van. (At that time in 2006 she was able to walk and get on the van by herself.) When she was hesitant I would give her a push on the “backside” and tell her the driver was going to take her for a ride up the mountains. (To Barbara a hill was a mountain and she enjoyed riding anywhere and with anyone.) It wasn’t too long before Barbara gave no “resistance” when it was time to go to Day Care.

For about the past year Barbara has not been able to walk. She adjusted immediately to using a transport chair in the house to go to bed, use the toilet, or go out for a walk. As each new challenge arose she made adjustments to the equipment we had to use for her. She gave us no “resistance” to the use of the Sera-lift when we first used it on Thanksgiving Day 2011. And to this day we use it an average of eight times a day to toilet her and get her in and out of bed. To our family, Barbara has been the ideal patient, under the conditions she has to live with on a daily basis, and she has the best of personal care that we can give her at home. It would be most difficult for a person in good health to emulate what she goes through each day by spending her entire day sitting in a recliner chair and her nights flat on her back for ten to twelve hours. She is most cooperative in all we do with and for her.

I’ve heard it said many times that most Alzheimer’s patients who were calm and collected prior to contracting this disease are more likely to be passive with the disease. There may be caregivers who would take exception with this theory, but we must also remember as we’ve stated in an earlier article, that no two patients will have all the same traits and characteristics of this disease. It is my intent in these articles to highlight our journey with Barbara.

One of the meanings by which Webster’s Dictionary describes the word “aggressive” is “starting fights or quarrels, bold, pushing, a desire to dominate.” This type of Alzheimer’s patient may or may not have all of the characteristics, but certainly some of them prior to or after the on-set of the disease. Caregivers I have spoken to with this type of patient will experience far more difficulty in managing their loved one than I do. Many of these patients will be combative, tend to destroy items in or out of the house, and continually argue with the caregiver. I’ve been told stories of patients who have struck and pushed the caregiver and become violent within the house. A frail caregiver, be it man or woman, could not withstand this sort of treatment from a person of size. The life of the caregiver could be in jeopardy in an instant. At this point it is important for the caregiver to discuss this situation with the patient’s neurologist or physician to see if an anxiety medication would be helpful. Medication must be adjusted properly to suit the patient. Giving some medications during the day may make the patient drowsy and they will sleep for long periods of time. Then they won’t sleep at night.

An aggressive patient may have an influence on whether the caregiver chooses to keep him or her at home or if the caregiver is unable to handle the situation and must place the patient in a Long Term Care Facility. (Making this decision was discussed in our previous article.) This is not an easy decision and to keep an aggressive patient at home will add many more challenges to the caregiver. And as we’ve said in another previous article, the caregiver should try not to feel any guilt in doing this. The change from home care may prove beneficial to both in the long run. It’s a personal decision that the caregiver will agonize in their mind over and over again. Another thing to remember is that all caregivers have different levels of tolerance when it comes to this disease, where some can go the distance, but others may struggle with their own health or the welfare of other members of their family. This is not a “one shoe fits all” when it comes to caregivers. So if you are a caregiver, pat yourself on the back for what you are doing, because I know firsthand how difficult it is and what you are going through. I commend all the caregivers who may be reading this article and thank you for the care you give your loved one at home or in the Long Term Care Facility, if it was necessary to place him or her. Remember that caregivers are a select group of people and not all people can be caregivers.

(Previous articles are available online at www.patriotnewspaper.com, click on Features.)

Part 9, home care or long term facility?

This is the ninth 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.

In the first article of this series we briefly touched upon the subject of after the diagnosis of the patient. In this article we shall expand further the dilemma of what to do and when to do it. This will relate what our family did with Barbara and how we approached the subject.

In late 2004 we all sat as a family at the house----our four children and their spouses--- to make decisions about what to do with Barbara’s declining health as it pertained to the  house, cars, Wills, Health Care Proxies, Power of Attorney, and the future of Barbara staying at home. (This was all done prior to joining the Support Group, which is where we learned a lot on how we would care for Barbara.)

It was agreed by the nine of us that as long as my health was good our goal would be to keep Barbara at home and all of us, in some way, would contribute to Barbara’s needs. At this time she was still able to feed herself, toilet herself and bathe herself, so our contributions were minimal for the next couple of years. I was able to leave Barbara alone when I went to work or meetings and occasionally one of our children would come to stay with her.

We knew then that the disease would progressively get worse and we’d have to revisit our goal of keeping her at home from time to time, which we’ve done. We did not want to place her in a Long Term Care Facility until it was absolutely necessary. And that is still our goal today.

In many families this may not be an option---keeping the patient at home---due to extenuating circumstances, such as no immediate family living nearby, the patient is not married and has no children, the patient has no siblings, the patient has other medical issues besides Alzheimer’s, and the list goes on. Then there may be a family where siblings cannot all “get on the same page” and have various ideas on the proper care of the patient. And in some families it seems some siblings want nothing to do with the care of the patient and one sibling will carry the brunt of the patients care and the other siblings criticize the caring sibling for everything he or she does without offering any help. My suggestion to the caring sibling is to seek the advice of an Elder Attorney on how to file for guardianship of the patient, thus there will only be one decision maker. Decisions by the family must be made in unison for the patients care and well being. Our family has been on the same page from day one and that makes it so much easier to deal with one of the worse diseases a patient can be diagnosed with. Cooperation and understanding by all will make this journey much easier for everyone.

In March 2006, the facilitator of our Support Group brought in a guest speaker from Summit Elder Care. After she explained the program, called PACE (Program of All-Inclusive Care for the Elderly), our family members with me at the Support Meeting became very interested in what was said and we sought out more information about this program for anyone over fifty-five years of age or older who met certain criteria. A few weeks later a nurse visited our home to assess Barbara and found that she could qualify for the program. We filled out a few forms and other paperwork and submitted them for final approval.

By May 1, 2006, Barbara had formally been accepted into the program by Summit and began to attend Day Care once a week. We were also able to get help to come to the house to care for Barbara while I worked, shopped, had doctor appointments, worked outside in the yard, or did other errands. This practice continues today, although now Barbara attends Day Care twice a week on Monday and Wednesday. On Tuesday, Thursday, and Friday an aide comes from 9:30 AM to 1:30 PM to tend to Barbara’s needs. On Saturday an aide comes in the afternoon so that I may attend church.

Over the years Barbara has lost the ability to walk and I am now unable to pick her up or carry her. This problem was taken care of by Summit by providing a Sara-lift to pick Barbara up to move her around the house, place her on the portable commode, and to get her in and out of bed. At night and in the morning it requires two people to put Barbara to bed and get her up in the morning, so aides are at the house each morning and night of the week to help me with that part of Barbara’s care.

Other special items that we have at the house for Barbara’s care are the portable commode (as previously mentioned), a wheelchair, a transport chair, an electrical recliner chair that Barbara spends most of her day in, and a hospital bed with an air mattress.

So you can see, if you are a caregiver or about to become one, keeping the patient at home does have its challenges vs. placing the patient in a Long Term Care Facility where the caregiver does not tend to the daily care of the patient. Each family’s circumstances will be different and that will be the basis for a decision by the family members as to where the patient is cared for. There’s no right or wrong in this situation, and if the family makes a final decision to place the patient into a Long Term Care Facility they should not try to second guess their decision or feel guilty for having done so. In retrospect I am sure they will say it was the right decision later on.

I will emphatically say this though, if you do decide to keep the patient at home, know that you will be in for a lot of work; but also remember that there is help out there through several programs and you will need all the help that you can get. Trying to do it all alone may prove to much for some, however there may be a select few that will be lucky enough to handle the situation, depending on their mental state, age, and health. The decision you make could be for a lengthy period of time. I wish you all good luck in your deliberations and final decision.

Part 8

By Frank S. P. Yacino

This is the eighth 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.

This question is one that comes up most often at our support group meetings. It’s a difficult decision and my favorite saying to the group is “that we must think with our heads and not our hearts”. We have found that there is no one response to take care of each individual patient. In previous articles we have noted that no two patients are the same as far as their progress in this disease. We will detail in this article how Barbara surrendered her license, which she called her “riding car”.

No one wants to give up their license to drive, and lose their independence, especially the elderly who feel they are still capable of driving. At this stage in their lives independence is a necessity if they wish to go anywhere or do anything. Many may not have family close by or friends who drive and they feel the need to be free to come and go as they please. This is all well and good if they are still healthy, capable, and able to drive. But when it comes to a person who has Alzheimer’s they will tell you they can do anything, including driving. This is the time when the caregiver has to step in and take over the situation. This is a very serious matter and is not to be taken lightly.

During the year 2003 we all began to feel edgy each time Barbara would leave the house when I was at work. I’d ask her not to go anywhere while I was gone but apparently she didn’t heed my warning. Each time I would come home I’d feel the hood of the vehicle and it would be warm, thus telling me that she had gone somewhere. At this point in time she wanted to be independent, but we as a family didn’t want anything too happen to her or anyone else. We all knew and understood what an accident could do to her, the vehicle, and other people that might be involved, the biggest of which would be to have a fatality and end up in a lawsuit which could be devastating.

So in late October of 2003 I decided to speak to a local police chief about this issue. Based on what I told him about Barbara and her diagnosis he suggested that he’d notify the registry of the matter and they in turn would send Barbara a letter asking her to “surrender” her license to the Registry of Motor Vehicles (RMV), with the caveat that if her health should improve she could re-apply for her right to drive.

While we were waiting for all this paperwork to be done the holidays were approaching. Barbara was continuing to drive and shopping for Thanksgiving and Christmas. Just before Christmas she drove to the Auburn Mall for gifts while I was at work. This angered me at that moment because she drove on Routes 395 and 290 to get there. On Christmas Day that anger went away when I opened my gift from Barbara. She had gotten me two dress shirts. I gave her a hug and kiss, thanked her for her thoughtfulness and asked her to ask me from now on when she wanted to go shopping.

By the end of the year we still hadn’t heard from the RMV so I had to think of ways to disarm the vehicle so she couldn’t drive it anymore. With Barbara’s determination to drive, I had to be creative in counteracting that desire. The first thing I did was to unplug the electric cord to the garage door opener. This way if she hit the button the door would not go up. Another thing I did was to put the gear box of the vehicle into the neutral position (we had a 4-wheel drive SUV). Barbara would have no idea how to rectify both those items so she could drive the car out of the garage. You may be saying to yourself “why didn’t you just take the keys away from her”? Well, I did, but she had a spare key I didn’t know about, until she told me she tried to start the vehicle and the door wouldn’t go up. After I took that key away all of the keys were hidden where she would not find them. Barbara was quite mad at me for doing this but it was necessary to do at this stage of her disease.

A few other ways to disable a vehicle include removing the driveshaft, remove the battery, spark plugs, or put the car up on blocks and remove the tires. The caregiver will have to be very creative throughout the progress of this disease.

On January 31, 2004 Barbara received a letter from the RMV stating that the Medical Affairs Branch had been notified of concerns to her functional ability to operate a motor vehicle safely. Attached was a medical form that had to be filled out by her doctor (neurologist). I personally brought the form to the doctor on February 2, 2004 to have it filled out and returned it to the RMV on February 3, 2004. The form basically stated that Barbara had dementia and was not medically qualified to operate a motor vehicle safely.

Barbara kept an accounting of some of her daily activities in daily calendar books. We were fortunate enough to find these books through a cleaning process of the house. I found in the 2004 book a notation of the last time she drove the vehicle. It was February 11, 2004.

On February 11, 2004 Barbara received a letter in the mail from the RMV asking her to surrender her driving license within (10) days. (She had driven that morning before we received the mail.)  She was devastated and began to cry and wanted to know why she had to do that. I explained that they felt she was not qualified to drive anymore because of her dementia. (That’s what the doctor had called her diagnosis at this time.)

We haggled over this for two days. Being that upset and me not being able to make her understand what this was all about I suggested to her that we go visit the chief of police that I’d gone to too start the process. She did agree to that and I called him to see if we could meet him at the station and he advised me to come right over. This was on the morning of February 13, 2004. When we arrived I explained what was going on (which he knew anyway) and he asked Barbara to show him her license. She reluctantly handed it over and that was the last she saw of it. He told her he was going to send it to the RMV and that she would get an I. D. card in the mail with her picture on it for identification purposes only. I’m not sure she fully understood what was going on when the chief spoke to her and she asked him if she could have it back. Of course he said “no” and that’s when I got up and said let’s go to Barbara.

When we got into the vehicle she started in right away asking me to go back and get her “riding car” (license) from the chief and accused me of not loving her because I let him take her “riding car” away. She rambled like that all the way home and asked me again to get it back. I dialed the police station number and handed her the phone and said you ask the chief yourself. She did, but the answer was still “no”. Barbara was mad at me the rest of the day.

Twelve days after turning in her license to the chief Barbara decided to take matters into her own hands. On February 25^th she was so distraught that she called both the neurologist and the RMV to ask for her “riding car” back. Both calls ended up with a “no” and that made her madder. The next day she received her I. D. card in the mail from the RMV and she thought she was ready to go out and drive. It was difficult trying to make her understand that the card was not a driving license.

Many agonizing hours were spent discussing this subject on a daily basis. If we were out riding she would always ask me to take her for her “riding car”. On March 25, 2005 I had taken Barbara with me to a meeting for a construction project I was working on. She wanted to walk in the area so I let her. A short time later I received a phone call from the police advising me that Barbara was at the local Senior Center looking for her “riding car” and that they’d called the ambulance to take her to the hospital, thinking she was having a seizure. I told the officer to hold up on the hospital part and I would be right there. Once I explained the situation the EMT asked me to sign a waiver form stating that I would accept responsibility for her and her well being, which I did gladly.

For about another year Barbara would still keep asking for her “riding car” and eventually she finally stopped. This was a very difficult phase of her disease for her to go through, and for me as well. However, we did get through it, as all of you caregivers will when the time comes. Remember the one key word that I mentioned in the second article that was published? To refresh your memory, caregivers must have “PATIENCE” with their loved one. We have to be mindful that because they do not understand what is happening to them, we need to show love, care, and compassion at all times.

Through all of this anger that Barbara expressed I knew that I had done the right thing for her safety and the safety of others. To this day, I do not regret what I did at that time. Going back to the first paragraph I reiterate, “we must think with our heads and not our hearts” when it comes to making decisions regarding safety of our loved ones.