LIFE OF A LONG DISTANCE CAREGIVER: Alzheimer's - My Mom My Hero

My mom who has ALZHEIMER's/Dementia has become my hero. She touches my heart each and every day, as I am also her caregiver. Mom not only is my hero she continues to inspire me after 11 years of having this disease. It was not always like this, yet today, I am so fortunate to have an unconditional love for her.

I remember, several years ago "defending" myself from a few caregivers who thought that I should not say I was mom's caregiver, since I lived so far away. Their tone was less than complimentary accusing me of not physically caring for my mother each day. Their voices stated how could I speak about being mom's caregiver, what could I possibly know. They had the burden of living with their parent and taking care of them with what seemed to be a shift of twenty four hours a day.

At first I felt hurt. How could they think that the pain of seeing a parent disappear was any different than what they were feeling? I wondered if I was any less of a daughter to my mother because I did not live near her. Did I not feel the same amount of pain or maybe more? What difference did it make? I was and am my mother's daughter, and that will never change no matter how many miles or oceans separate us.

My heart breaks, my eyes fill and swell with tears the same as theirs. My feelings of affection are as deep and I tremble every time my mom forgets my name.

I do have great compassion for them and I could feel and share their pain! Yes I did not live with my mother so maybe my long distance care giving was easier, yet I too, had the agony of hearing and seeing my mother disappear in front of my very eyes. One moment she knew me, and then while still on the same phone call she had no idea who I was or who she was speaking to.

I spoke to mom's caregivers every single day to hear all about mom's conditions. Sometimes mom had a moment of clarity and at other times she was going by ambulance to the emergency room after the aides found her bruised or with a UTI (urinary tract infection) which had mom hallucinating. I heard about how mom loved to listen to the CD'S that I made of her favorite show tunes. I questioned what she ate, if she took her vitamins and what were the plans for the day.

There were times when I was so frightened and hurt since I was not able to just jump in my car and rush to take care of her. Once, when she was in the hospital in rehab I spoke to the physical therapist who told me that my mother was not following instructions. My answer was "how could mom possibly remember what you just said since she has Alzheimer's." Hearing the response "oh I didn't know she had dementia" was upsetting since hospitals are not required to list the disease on the patients chart.

I once received a phone call from the First Response that mom's neighbors reported her "just sitting" outside her apartment on the curb. Her caregiver left for the day and because of confusion mom went to sit outside to wait for her. You would think that one of her neighbors would have just brought her back into her home. Maybe they were frightened or afraid of "catching" Alzheimer's. After all these years of knowing her how could they now just shun her like this?

So with deep thought my question is, am I any less of a daughter than the others since I am a long distance caregiver? Or do I feel less pain or love my mother any less? Thankfully for me I do have the answer.  My love for her is as deep as the bottom of the sea and as vivid and bright as all the stars that light up the universe. She is my mother and I am always her daughter.



MY MOM MY HERO book is dedicated to the people we love.
Available on Amazon & Kindle & Audio

Courtesy: http://mommyhero.blogspot.in/2016/01/life-of-long-distance-caregiver.html 

MONEYLIFE: Assisting Those Who Cannot Look after Themselves

India has an acute shortage of elder care and assisted living facilities for senior citizens. Here is an initiative to bridge this gap.

Four years ago (2010), we wrote about Silver Innings Foundation and its not-for-profit initiatives to help senior citizens on a variety of issues. A lot has happened since. Sailesh Mishra has set up A1 Shehanjali, the social enterprise of Silver Innings (now a registered trademark), an assisted living elder care home for people suffering from dementia, Alzheimer’s or Parkinson’s and the very old.

It is a tough job and the soft spoken and affable Mr Mishra, founder of Silver Innings, a social enterprise, and Silver Innings Foundation, an NGO, is the first to admit it. “It isn’t as easy as advising people about how to care for elders; all you need to keep in mind is to make it a home with a heart,” he says.

Mr Mishra created this home after six years of running Silver Innings which helps and guides senior citizens on all aspects of their lives. A1 Snehanjali finally started in August 2013. Snehanjali, means a gift of affection and this is what he tries to inculcate in the care of elderly residents at its scenic Nalasopara (west) care-home, 50km from Mumbai. “At A1 Snehanjali, our mission is to help elders and their family members to overcome the challenges of ageing and show them the way to transform lives to mitigate loneliness, helplessness and boredom and live with dignity in their silver years.”

The home admits those above 55 suffering from dementia, Alzheimer’s, Parkinson’s and those who require assistance but NOT constant medical intervention provided by nursing homes. A1 Snehanjali follows a lengthy admission process to ensure that elders who come to their home are not dumped. A1 Snehanjali’s counsellors visit the homes of the elderly to find out more about them and their family situation before admission. According to Mr Mishra, 36 admissions were rejected on suspicion that they were cases of dumped, third stage of Alzheimer’s and who required nursing care. A1 Snehanjali insists on monthly visits by the resident’s family after admission. “We do not want to encourage people to be a part of our home if they do not really require it,” he says. At the moment, A1 Snehanjali has five residents.

It provides facilities like provision of nutritious food, medication management, bathing and dressing, incontinence care, weekly medical check-up and transportation for doctor visits, three vegetarian meals a day, laundry services, TV and music and 24x7 access to the attending staff.

What does it cost to stay at A1 Snehanjili? There is a deposit of Rs3 lakh, including a non-refundable donation of Rs50,000 to Silver Innings Foundation (NGO); interest-free refundable security deposits of Rs1.5 lakh and medical emergency fund of Rs1lakh payable to Silver Innings (Social Enterprise). The monthly fees depends on the level of care required. The basic fee is Rs30,000/pm including food. It does not include medicines, toiletries, diapers and special medical treatment.

It also offers a ‘respite stay’ of one to three months on payment of a deposit and costs.

“We live in a society which has replaced nani (maternal grandmother) with NANNY. We need to empower society to Engage the ‘Age’ing by showing the youth a mirror of their own future, says Mr Mishra. He hopes to achieve this by encouraging young people to volunteer, act as change-makers and to make donations to help it function smoothly.

Donations to the Silver Inning Foundation are exempt under Section 80-G of the Income Tax Act.

A1 Snehanjali

A1 SNEHANJALI Elder Care Home

Marciana Bungalow, D’silva Nagar, Nala Village, Nalasopara West,  Taluka Vasai, Dist. PALGHAR, Maharashtra - 401203

Contact No : 91+9323919145

Email Id: a1snehanjali@gmail.com; silverinnings@gmail.com

Website: http://a1snehanjali.com

http://silverinningfoundation.org/

Courtesy MONEYLIFE : http://www.moneylife.in/article/senior-citizens-assisted-living/37674.html

Helping Your Child Cope with Alzheimer's : Parents Guide Helping Children Understand Alzheimer's Disease

Children can be deeply affected when a beloved grandparent develops Alzheimer's disease. They may become afraid, confused, sad, angry, frustrated, guilty, worried, or embarrassed -- just to name a few potential feelings. Although each child reacts differently, there are some common fears:

1. The grandparent doesn't love them anymore
2. Their grandparent may be crazy
3. It's their fault that their grandparent is sick 

4. They may catch the disease
5. Their parent(s) may get it  

Signs That Your Child May Be Having Problems Coping

The Alzheimer's Association has published a brochure for parents that lists the following behaviors children may exhibit if they are having a hard time understanding or accepting the disease:

1. Withdraw from or lose patience with the person
2. Do poorly in school
3. Express physical pain, like a stomachache or headache
4. Spend more time away from home
5. Stop inviting friends to the house
6. Argue more with others at home, especially those providing care for the person with Alzheimer's

Special Issues for Teens

Teens may express a variety of thoughts -- both positive and negative -- about how their lives have changed because of a grandparent's dementia. According to the brochure mentioned above, these thoughts may include:

1. I don't like to talk about what going on at home with my friends
2. When I help out with my grandparent I feel like my family really needs me
3. I feel good that I know how to do the little things that make a difference for my grandparent
4. Sometimes I feel embarrassed about how my grandparent is acting
5. I don't feel comfortable having my friends over
6. I've never felt closer to my mom now because we're facing this together

Read in detail here , click : 
Marie Marley: 'Grandma Doesn't Know My Name!' Helping Your Child Cope with Alzheimer's

by Marie Marley PhD  

Music Therapy in Alzheimer and Dementia Care : Music Therapy Association of British Columbia.

 What Can Music Therapy do for Those With Dementia?
The elderly population is one of the most common populations music therapists work with. When it comes to dementia, music therapy is one of the most successful interventions. In Canada an estimated 65% of music therapists work with the cognitively impaired elderly. In a review of special care units staff rated the effectiveness of different interventions and music therapy was viewed as the best interventions for this population (Gutman, p. 49). Music can serve a means of communication for those where the function of language has become very challenging or lost. Language appears to be a relatively new function of the brain in human history, whereas music is pre-verbal and is pancultural. Music is a pre-verbal and sometimes non-verbal brain function, predating the ability for language. Furthermore, music is processed by many different parts of the brain rather than just one center, as in language. The elements of music such as rhythm, pitch, and melody and are all processed differently. The emotions are also tied in with music, thus activating the limbic system. Oliver Sacks, an advocate of music therapy, says that we listen to music with our muscles. The arousal is in the brain stem and the dynamic registers in the basal ganglia. With music being received and processed at the brain stem level, it shows how basic and primeval sound is to humans. This is why, as Sacks says, deeply demented people respond to music (Frohnmayer, p. 27).  

Music therapist and author Alicia Ann Clair identifies four main benefits for those with late stage dementia:
1. changes in facial expression and tension
2. increased eye contact
3. vocal activity
4. physical movement (Clair, pp. 81-82)


In a small study by Norberg et al., 1986, music was the only stimulus that could elicit a response from those in the final stages of Alzheimer disease. They measured responses through heart rate, breathing, eye blinking and mouth movements (Dawson et al., p. 62). Aldridge also supports the evidence that music therapy is important to improve the quality of life of those with Alzheimer's. The spiritual outcomes of a sense of belonging and acceptance by others can be gained through a musical milieu (Aldridge 1994, p. 275). Music also accesses different parts of the brain (especially the right hemisphere and limbic system) because of the many elements involved in music, such as rhythm, melody, pitch, timbre, accent, etc. Language is a function of the left hemisphere. Thus, the combination of language and music, as in song, offers a “...greater chance of activating intact neurological pathways than using language alone” (O’Callaghan, p. 53). There is research that supports the fact that Alzheimer's patients are able to retain musical perception (Gerdner and Swanson, p. 285). I call the ability to remember music when so many other abilities and memories seem inaccessible ‘musical memory’. I see it when a patient remembers all the words to a song yet rarely speaks or can put a coherent sentence together. I see it when we have sung a song and then five minutes later the patient is still humming it. This is what makes music “...a powerful catalyst for reminiscence...” (Gerdner and Swanson, p. 285).

On September 18, 1992 the U.S. Senate passed the Music Therapy for Older Americans Act into law. They passed Bill S.1723: Special Committee on Aging: “Forever Young; Music and Aging.” Washington: U.S. Government Printing Office (Castle, p. 1). It included provisions for funding for music therapy with the elderly, recognizing the benefits music has. The Act called for “the use of musical or rhythmic interventions specifically selected by a music therapist to accomplish the restoration, maintenance or improvement of social or emotional functioning, mental processing, or physical health of an older individual (Castle, Brown University).” The Act resulted in funding, education, training and dissemination of information.

Agitation and confusion among those with dementia is one of the main areas of concern for health care practitioners and care givers. In a study on the effects of individualized music on this population, music had soothing benefits that were, in many cases, both immediate and observable one hour later. Results were deemed to be because of two key factors: degree of personal significance of the music, and timing of the intervention, i.e., before peak levels of agitation set in (Gerdner, p. 284-9). Similar results were obtained in using individualized music (personally meaningful music) during the bathing of Alzheimer's patients. Behavioral problems and agitation decreased by an incredible 63.4% during the weeks music was used (Clark, pp. 10-17). In a small study comparing the effects of relaxing/classical music and favorite music on repetitive disruptive vocalizations of persons with dementia, both styles of music were found to be significantly effective in decreasing vocalizations (Casby & Holm, p. 883). A 1994 study on severe craniocerebral trauma used sound as a bridge to mute patients which may have transferability to those with dementia and are mostly or totally non-verbal. The writers observed that “...a pre-verbal, emotionally-focused tonal language almost invariably is capable of reaching the still healthy sections of the person” (Jochims, p. 8). Music therapy can facilitate contact seemingly non-responsive persons, allowing them to experience and communicate on emotional, social and cognitive levels.

For the Hindu the art of playing is akin to striving for perfection, perhaps in the sense that God is perfect, and thus musical perfection is a parallel. Khan says that chaos and confusion arise out of missed notes, stumbling rhythms, lack of focus, lack of humility and devotion. For him, “A musical mistake is also a spiritual mistake” (Berendt, p. 156). This philosophy is in stark contrast to the philosophy of music therapy. In music therapy, and perhaps particularly in dementia care and other challenged population groups, everyone is encouraged to participate in music and not worry about being perfect. The focus is often on the act of expression, of creativity, of fun and music-making, on participation. The only situations where this differs is where an element such as musical rhythm is being worked on for a purpose, such as a goal of increasing the attention span. 

Music is often an enjoyable art for most people which makes it a medium of therapeutic value. It holds a unique place among the arts in its fun and entertainment, which is why I include fun as an area of spiritual need. From sound effects to witty lyrics, from cartoon music to childrens' action songs, fun and humor play a major role in our perceived enjoyment of life. Almost everyone has associations with music and can recall when they once heard a certain piece of music in a certain situation and how they felt. In a study with severely regressed persons with Alzheimer-type dementia the researchers found that despite the severity of the dementia and the progressive decline of the participants over the fifteen month period, the subjects were able to sit through the duration of the half hour session and connect with others. They described the music therapy group as “...the only time in their week when they could successfully interact with others in some acceptable form” (Clair/Bernstein, p. 299). Physical restraints were not needed during the music therapy. Restraints were more commonly used then (1990) than in recent years. 

I recall a client who was physically restrained because her pacing and lack of awareness would put other residents at risk for falling and she would not rest if left unrestrained. When restrained she would sit in a chair with a table cover on it that would allow one to have lunch off it, like a tray, what we call a “geri chair”. She was a fifty-three year old woman with Pick's Disease, a rare form of severe dementia. She loved music and even when unrestrained would actually lie down on her bed to listen to me sing some of her favorite songs as I played the guitar, songs like You are my sunshine, Love me tender, etc. She would smile, stare intently, and could amazingly even fall asleep to the music. I was certain that in the depths of her mind she was aware of her situation. When restrained she loved the large bell tree, which I would lay on its side, hand her a wooden mallet, and she would play it from the bottom to the top, smile, look at me, then put the mallet down for a few seconds. Then she would repeat the pattern. Instead of fidgeting and sliding around in the chair, she was contentedly focused on the bell tree. She could be left alone with the instrument and remain content for an hour or two, enough time for her body to rest from the insistent pacing.

The playing of simple percussion instruments is frequently used with the elderly as a means of rhythmically engaging their attention and as a means of actively involving them in the therapeutic process (Aldridge 1996, p. 209).

It is important to summarize some of the evidence based findings on the success of music therapy with the elderly. This general findings are important towards developing music therapy interventions that foster spiritual fulfillment for those with dementia.


Summary of Findings

After examining all of the different studies and findings, some general conclusions can be reached when it comes to considering music meant to soothe and relax the elderly person with dementia.

Music that is familiar to the patient can evoke a more positive response than unfamiliar music. One might surmise that if the territory is familiar, something known, then it provides more comfort than something which is foreign and takes getting used to. Familiar music is predictable and thus reassuring, comforting, something that is known in an environment that probably appears unknown after living in the house they have always lived in for fifty years. Unfamiliar music may be less successful because it requires processing and analysis by the brain. When one listens to a new piece of music (especially a musician) the brain tends to be engaged in analyzing the instrumentation, judging the overall quality, searching for melody, interpreting the words, etc. These are skills the Alzheimer's patient likely does not have.

Degree of liking is a second factor, similar to the first point. Research has shown that a person tends to breathe deeper listening to music he or she likes (Winter, p. 42). Of course, what one person finds relaxing or pleasurable the other person may not like at all. Musical taste is very individualistic. Despite all the best intentions of a music therapist to prescribe a particularly soothing tape that is a personal favorite of their own, the fact is the patient may prefer to listen and respond better to something completely foreign than that, such as country and western. Numerous studies seek the ultimate answer that would provide a given formula for curative music. While certain elements and factors can definitely contribute to this, the fact remains that other variables come into play. Paul Radin, writing about music and primitive peoples, asks “What we should like to know, of course, is the extent to which the actual music, the sounds which issued from drum and rattle and flute and from the human throat, were regarded by either the patient or the practitioner as aiding in recovery” (Radin, p. 4). So apart from how much the patient likes the music, there is also the factor of perceived benefit from it, the familiar placebo effect, though powerful enough in its own right. After all, belief systems are what support us through life. 

While music may be familiar, it must also be determined what the patient's history and associations are to that music. I have had experiences in working with the elderly where an unexpected song (for example, You are my sunshine or even Casey Jones) is a trigger for emotional upset. Of course, that kind of response can be dealt with on an individual basis. The woman who cried upon hearing Casey Jones remembered the song from childhood and had a tender spot for those kind of ballads that related the true story of an event that happened close to the period she was born. Even a few days ago a German woman began to cry at the bittersweet childhood memories elicited from an old German song I played and sang with her called Heidenröslein. For others it may be a reaction to a Mozart aria or a Bach chorale. In working with an agitated, confused 65-year-old man, Australian music therapist Judy Cooper made him a tape of two songs that repeated over and over. They were two of the most significant songs in his life. The response was relaxation along with focused attention and listening (Cooper, pp. 22-23). Such a tape may naturally include several songs. 

Finally, how the musical elements go together and how they function must be determined. The desired response may be dependent upon harmony, tempo, rhythm, melody, timbre, instrumentation, etc. (Maranto, p. 157-158). Music with a slow, rhythmic tempo can be relaxing. Music with a pattern or that is sedative can also be found to be relaxing. Music that arouses feelings of love and tenderness can also produce similar effects known as parasympathetic arousal. Conversely, faster, more complex music can be arousing. The autonomic nervous system is sensitive to pitch. High pitch generally causes tension and a low pitch conversely is more resonant, relaxing. And yet some people love to listen to Zamfir on his pan flute as opposed to a double bass concerto by Dragonetti. Volume, whether too loud or too soft, can be bothersome. As mentioned before, the personality of the listener comes into play as a variable: age, intellect, ethnicity, environment, economy, religion, education, and other personality factors. If the music is familiar and pleasing, it will have a greater effect (Cook pp. 24-25). At another facility I filled in at I began a program where I played the piano quietly in the background while the special care residents had breakfast. I always began and ended with Oh what a beautiful morning as a kind of reality orientation and because the song sets a nice mood. The residents (and staff too!) were obviously brighter, smiled more. Some sang the song being played, many remained seated much longer than usual. The staff commented how it created a good atmosphere for everyone as the day was beginning. Such a program was due to results supported by the literature. In a Swedish study testing different kinds of music as the stimulus, soft, melodious, relaxing and romantic music, often stringed instruments and with consistent tempi and volume, was most successful in keeping them seating longer and eating better (Ragneskog 1996, pp. 265-268).


 Reference:
Music Therapy Association of BC: Alzheimer's Disease