Aurora Residential Care Budget as of February 2024

 

Aurora residential care cost per month 2024

 

Monthly budget of Anke & Markus – requirements for being accommodated full-time in the Aurora Special Care Centre Residence are as follows:  

 

Aurora Residential Care Anke & Markus (monthly total cost)		R25 000.00	(full board & lodging)
Clothing and toiletries	±	R500.00
Disposable nappies	±	R2 906.00
Medical aid: Hospital Plan (A & M’s portion). Dental and medical appliances	±	R4 678.00   R1 500.00	Per month (saving towards replacements)
Pharmacy (co-payments non-PMBs)	±	R1 000.00	Per month
SUBTOTAL:		R35 584.00	per month
TOTAL:  R35 584.00 x 12 =		R427 008.00	per annum

 

*Excluded from above budget:

 

We are on a hospital plan. Medical expenses for ourselves and Anke and Markus (everything that takes place outside of a hospital stay) are for our own account. Hospital plans pay for in hospital services plus (required by law) certain listed/permitted ‘prescribed minimum benefits’ (PMBs) such as chronic medicine according to a list of some 27 conditions. Hospital plans do not pay for visits or other services provided by doctors, optometrists, physiotherapists.  

 

 

TODAY - Rob Bell. January 01 - the first day of 2024. Mindful

On The Road With Thomas Merton

I Lose My Ability - Jonathan David Helser, Melissa Helser (Live)

 

Two weeks ago, and last week.                                            July 7, 2023

‘Can you thank Me for trusting you with this experience even if I never tell you why?’

Helen Roseveare shared that God spoke to her the above words within her situation of suffering https://youtu.be/b-BLCXWfXPs

Hearing the above words is like aha, say what?  

I am feeling ashamed that I have never heard my circumstances so ‘clearly’. I remind myself in my down moments that I am privileged to be able to take care of Anke and Markus. That my family is my life assignment.

But reading and understanding that God wants me to thank him for trusting me with my circumstances? Trusting Him for allowing Anke and Markus in my life? Wow!

So I want to ‘speak it: thank you, God, for trusting me enough to have Anke and Markus in my life. To equip me to love them even more than what I think I would’ve loved them were they ‘normal’.

Another day closer…

It is the 7^th early morning continental breakfast for a B & B guest. I put in great effort sourcing, preparing, and presenting the breakfast. This breakfast is part of my primary source of income. This is what I do in helping generate my portion of the income we need for our monthly budget in managing our family of 5 adults. I am happy to be able to offer this service. 

In the process of preparing the breakfast I became aware of something sticky on my right-hand thumb. Without my reading glasses I saw tomato sauce on my thumb? But I did not use tomato sauce? After licking the red stuff off my thumb, I realized it was blood, I cut myself without even realising it. But how and where?

Loadshedding is not helping.

Am I losing it now? I am in my 71^st year on earth (after all) and another day closer to my end? Is this part of my writing on the wall, part of my getting older script? 

But what about Anke and Markus?

Nah! I am working on rescripting things in my being. My thought processes. God is trusting me with Anke and Markus! Do I trust God trusting me?

A parent is a parent and caring for their child is in the parent job description. Lifelong. God trust a parent by giving him/her a life assignment called a child. Be it hard or not. 

Parenting is part of our sanctification process.

Caring for Anke and Markus teaches me ongoing life changing lessons. Not to give up. To actively (try and) see clearly in every moment of my existence. That every moment is enough. God has only my best interest at heart. That I am loved. God trusts me. He has been by my side as father to Anke and Markus for more than 43 years. Sanctification. Submitting. Day by day. It is enough.  

My severely disabled beautiful children, nonverbal with sensory issues and no self-care.

It is tough.

Some days I feel only like a personal care attendant of two strangers who cannot walk or talk, two people I happen to love so very much that it sometimes hurts. Can you thank Me for trusting you. Lying awake sometimes at night thinking how much I long for my real children. Wont they please come back. Please! Can you thank Me for trusting you.

I find myself in uncharted territory with my children even to this day. Forty-three years later, especially at age 71.  

This past Sunday. Mustering the strength to give Anke and Markus a haircut. I call it hair cutting acrobatics. Anke hates it most of the time, protesting until I have finished cutting her hair. Markus is so weak that I have mastered the skill of cutting his hair with him lying on a plastic sheet on the carpet. I literally climb all over him in a squatting position lifting his head as needed to get to all sides. It is challenging and at the same time very funny. I am exhausted afterwards. My reward? They look more beautiful than half an hour earlier! And I love them with fresh love.

Post haircut. My body aches more than usual but I am okay. I shower to rid myself of all the fine hairs Anke brushes off on me. My body hurts. Then what happens from time to time, while showering after such hair cutting intimate interaction with Anke and Markus I find myself crying thinking of the craziness of all of this. I would rather have my children go to a hair salon, maybe drink a coffee while waiting their turn. But then again this is what it is, repeating the hair cutting ritual hopefully only in 5 weeks’ time again. Can you thank Me for trusting you.

The Anke and Markus scheme of things is in a sense scarier in terms of our reality of getting older. It is scary seeing Anke and Markus getting older and weaker. Seeing us getting older and weaker. Please God help me trusting you!

ZUCCHERO - UN SOFFIO CALDO OFFICIAL VIDEO - Nature Freedom Liberty - Leading up To Markus's 40th Birthday on 23 November

PARENTS OF CHILDREN WITH DISABILITIES AND STRESS

 

PARENTS OF CHILDREN WITH DISABILITIES AND STRESS
Raj Kumari Gupta*, Harpreet Kaur**
 
ABSTRACT
The present study examined stress among parents of children with disabilities. 102 parents formed the sample of this study, 30 of whom had children without a disability. A stress assessment test with internal validity of 0.608 was utilised. This test had two parts: physical and mental, former with 19 items and latter with 21 items. The test was applied to check differences in stress, gender differences, and differences in mental and physical stress. Results show that, most parents of disabled children experience stress, physical and mental stress are significantly correlated, gender differences in stress experienced occur more in the mental area, and parents have higher mental stress scores as compared to physical stress.
 
INTRODUCTION
Diagnosis of intellectual and physical disability in a child provokes a period of disequilibrium followed eventually by an adjustment to life with or without undue stress. There are various stresses which emerge and continue over time. Discrepancies between expectations and the development of the disabled child continue bringing feelings of loss and grief (1).
 
A parent shows a series of reactions after knowing that their child is disabled. These include shock, denial, guilt, sorrow, rejection, and acceptance. Questions like ‘why me?’ ‘How can it be?’ keep arising without answers. Some of them undergo tremendous guilt feelings, experience ongoing deep sorrow, have strong under expectations of achievement, may have unrealistic goals, may want to escape form reactions, and ultimately turn to accept the child (2). All this can affect parents differently. Their physical and mental health suffer (or it is perceived to suffer). Wikler (1) mentions that the continuous stress chronically affects their lives.
 
Farber (3) found that initial stress in parents appears to be sex-linked which shifted with time. Parents of severely disabled children undergo more overall stress than parents of chronically ill or normal children. According to Faber (4), jealousy and resentment may also develop in siblings if the disabled child requires most of his parent's attention, leaving short tempers and impatience for the others.
 
Jani (5) in a study examined the social problems related to the presence of a disabled child in a family. Results indicate that parental feelings were marked by ongoing anxiety about the future, especially as the disabled child and parents gets older. Psychological stress with decreased social interaction. Misunderstandings within family coupled with economic loss and stress were significant facts associated with the presence of a disabled child in the family.
 
Dupont (6) found in a review of a four-year caseload of a small community mental health centre, that community mental health services often had a policy of not providing services to families with a disabled child.
 
Loeb (7) has expressed that parents of disabled children face many special stresses. They have little opportunity to explore their own needs, dreams, and personal challenges.
 
Fishman et al. (8) in their study examined the role of parenting stress and parental depression and marital intimacy among parents of disabled children and developmentally normal children. Results showed that mothers and fathers of disabled children showed significant greater stress and depression than parents with non-disabled children.
 
Heller et al. (9) found that parents of disabled children, carry a heavy ongoing impact burden in terms of living within the daily challenges of caring for their disabled child. 
 
Peshawaria et al (10) stated that there were inhibiting factors affecting parents in trying to cope in caring for disabled children. The challenge and pressure lie in trying to balance caregiving and ‘normal’ life. Overall support was mostly lacking.
 
Seshadri et al (11) reported a direct relationship between the degree of perceived burden, social emotional burden, disruption of family routine and disturbance in family interactions and relationships for parents with disabled children.
 
Hedov et al. (12) studied self-perceived health in Swedish parents of disabled children. They found parents of disabled children had significantly lower, less favourable scores on self-perceived health than did the control group.
 
Shin and Crittenden (13) in their study provided explanations for wellbeing of Korean and American parents of children with disabilities. Causes of stress for the American parents were specific to the individual variables. For Korean parents, cultural values that carry social influences were strongly associated with their experience of stress.
 
Laurvick et al. (14) while working on physical and mental health of parents caring for a disabled child found that factors positively related with better mental health were the following: the parent working full time or part-time outside the home.
 
Kermanshahi et al. (15) in their study on perceptions of living with children with disabilities found six major themes: challenging the process of acceptance, painful emotional reactions, the interrelatedness of parent health and child's wellbeing, struggles to deal with oneself or the child, inadequate support from family and community, and the anxiety related to the child's uncertain future.
 
Studies in literature indicate that parents of children with disabilities, would have high stress and low health scores. On the other hand, Mahoney (16) documented some positive effects. He found that the a disabled child can have an integrative effect by focusing the family's energy in a concerned, loving manner, thereby minimizing some of the other day to day problems. Some parents expressed a new appreciation for life and ordinary things they used to take for granted.
 
The present study was planned with the hypothesis that, a) Parents of Children with Disabilities (PCD) will experience significantly greater stress as compared to Parents of Children with No Disability (PCND), b) Parents of children with disabilities will experience significantly greater mental stress than physical stress.
 
The major findings of this study are that parents of children with disabilities experience more stress than normal. However, all the subjects experience higher levels of mental stress than physical stress.
 
*Address for correspondence
# 3379, Sector 35-D, Chandigarh. U.T. - 160022, India
 
ACKNOWLEDGEMENT
Thanks to Ms Harpreet Kaur, for collecting data and reviewing part of the literature for this study and Dr Nisha Duggal for collecting some part of the data.
 
REFERENCES
1. Wikler L. Chronic stresses of families of mentally Retarded Children. Family relations April 1981; 30(2):281-288.
 
2. Berdine W H and Blackhurst A E. An introduction to Special Education, US: little Brown and Company. 1985 ; 618-625.
 
3. Farber B. Family organization in crisis maintenance of integration in families with several mentally retarded child. Monograph of society Research and child development 1960, 25(1).
 
4. Faber B. Family organization and Parent – Child communication: parents & siblings of a retarded child. Monograph of society research and child development 1963; 28 (whole no. 91).
 
5. Jani MC. Social a mentally retarded child in family. Dissertation Diploma in Medical and Social Psychology. Bangalore University 1967.
 
6. Dupont H. Community mental health centres and services for the Mentally Retarded. Community Mental Health Journal. Springer, Netherlands. March 1967; 3 (1).
 
7. Loeb RC. Group Therapy for parents of mentally retarded children in Attwood, T. The crydon workshop for the parents of severely handicapped School age children. Child: Care, Health and development; 5(3): 1979177-188.
 
8. Fishman S N. Woff L C. and Non S. Marital intimacy in parents of exceptional children. Canadian journal of Psychiatry 1989; 37(6): 519-5257.
 
9. Heller T, Hsieh K, and Rowitz L. Maternal and Paternal caregiving of persons with mental retardation across the life span. Family relations 1997; 46 (4): 407-115.
 
10. Peshawaria R, Menon D K, Ganguly R, Roy S, Rajan Pillay P R S, & Gupta S. A study of Facilitators and Inhibitors that effect coping in parents of children with mental retardation in India. Asia Pacific Disability Rehabilitation Journal 1998; 9(1).
 
11. Seshadri M K, Verma S K, and Prashad. Impact of mental retardation of child on the family in India. Journal of Clinical Psychology 2000; 473-498.
 
12. Hedov G, Anneren G, and Wikblad K. Self perceived health in Swedish parents of children with Down’s syndrome. Quality of life research. May 2000; 9( 4).
 
13. Shin Y J, and Crittenden K S. Well being of mothers of children with mental retardation : An evaluation of the double ABCX model in a cross cultural context. Asian Journal of Social Psychology 2003; 6(3): 171-184.
 
14. Laurvick CL, Msall M E, Silburn S, Bower C, Klerk N de, Leonard H. Physical and Mental Health of Mothers caring for a child with Rett syndrome. Pediatrics Sept 2006; 118 (4): e 1152 –e1164.
 
15. Karmanshahi S M, Vanaki Z, Ahmadi F, Kazemnezad A, Mordoeh E and Azadfalah P. Iranian Mothers’ perceptions of their lives with children with mental retardation: A preliminary Phenomenological Investigation. Journal of Developmental and Physical Disabilities 2008; ISSN, DOI 10.1007/S 10882-008-9099-3.
 
16. . Mahoney S C. Observations Concerning Counseling with parents of mentally retarded children. American Journal of Mental deficiency 1958; 63: 81-86.