A Research Report Prepared by Gloria Pullen and Jim Kyle
We have particular concerns for elderly Deaf people. Although the Deaf Community is a powerful support system for Deaf people throughout their lives, it is a small community and one which requires participation. As people become older and less mobile, it becomes much more difficult to reach the Deaf Club on a regular basis and there may be no organised transport which can be used. One solution is to bring elderly Deaf people together in homes, such as Eventide Homes in Glasgow, but the arguments of leaving one’s familiar environment are just as strong for Deaf people even when they have the prospect of meeting and living with other Deaf people. However, we are concerned that the family and neighbourhood ties might be much less for those older Deaf people and that declining health brings with it inordinate strains in access to health care. The study which is described below is the first stage of a larger programme which we intend to undertake.
The purpose of this study was to meet with elderly Deaf people and to elicit their concerns and to discus their experiences at present. The work has been carried out by Gloria Pullen in 1996. At the end of the study we have appended an extended transcript of one experience of a Deaf man.
The interviews have been completed with 8 Deaf people by visiting the Elderly Deaf Club each Wednesday. The presence of only 2 males are explained by the fact there are significantly more females at the Club. All are over 65 years and 4 are over 75 years old.
All have lived in the same home for many years. One of them had to move because of security - she had been broken into five times. If it had not happened, she would not move at all. Only two of them lived in one-bed flats; the others live in homes with more than one bedroom. Three of them live in flats, one lives in a sheltered home and the rest live in their own homes.
All of their children had moved out but one had accepted his daughter back and so her family was living with him. The house was in his name. Most of their children have remained in the same city, within reach. The children visit their parents on average, once a fortnight, but if the children live outside of the city, the expected rate of visiting was once a month with this alternating between the Deaf person’s home and the children’s. This group are likely to see their grandchildren about once a month but one sees them every week and another sees them once a year.
Communication with their children, grandchildren and neighbours
They claimed to communicate with their children in sign except for two of them who communicated in sign and speech, and one of them in speech only. Grandchildren communicated mostly in sign or sign and speech; two said speech only.
Only two of them had good neighbours; the others said their neighbours were just okay or not good. Two of them actually understood their communication but the rest found it difficult to understand. Four of them tried to talk to their neighbours but the remainder said just "hello" or had no dealings at all. They explained that the neighbours were not very important to them because of the communication. If they needed help, however, they had to put on "a brave face" and ask for help - especially an issue in the case of telephone calls for the doctor or to contact their children. They also said that sometimes the neighbours did offer when they were in a good mood but at other times they seemed not to bother with them. Only two of them said that their neighbours saw them every day but the rest said it was possible that they would not see them for a month at a time or longer.
They went shopping at least once a week, mostly on their own, with or without transport. They were reliant on their shopping trolley - without the shopping trolley they would be unable to cope and to be independent. Only one of them had a home help for shopping; most said that no one did the shopping for them unless it was urgent as they did not want to ask their children to help them. If they had a partner, they felt they can support each other. Most go to their local supermarket.
Only one of them said that the family gave a lift to the shops but the rest of them did not have offers from their children or friends. Most of them walked back from the shops because of the problem that the bus services do not have a support person to lift the shopping trolley into the buses. Shopping was done regularly to avoid boredom and to get out and also to avoid heavy shopping on a single day.
Contact with friends
Most of them were in contact with friends since the time when they had gone to school. Most contact was at the Deaf Club. All of this group went to Deaf Club every week to meet their friends. Few went there to talk about problems.
Most went to the Deaf Club for the chat rather than to perform any functions or take part in specific activities. All lamented the loss of the minibus which allowed them to stay later. Now using public transport they were greatly constrained. They were much less likely to go out in the dark for fear of their own safety.
Very rarely did they see their children at the Deaf Club but they preferred them not coming as they wanted to enjoy themselves with their friends. None of their brothers or sisters went to Deaf Club except for one who has a Deaf sister. Their Deaf friends go to Deaf Club - almost all their friends see them at Deaf Club.
Three of them said their health at the moment was very good and most of them said that they were okay or good. Five of them had been to the doctor in the last month - the rest were either in last six months or in the last year.
Six of them said they had not been to hospital for years. Only one of them had been in the last month and other in last six months. Communication with health staff such as the district nurse was a problem but one said that she tried
"... lip and speech but not understood fully but watch the movements so I shall understand what is going on (visual)"
Another said that she used speech and writing but that she showed the notes to her son to clear up any misunderstood information. Sometimes she used her nephew as an interpreter as he lived upstairs and he could sign well. If he was at work, sometime his wife came down to make sure she got the information. Then she explained to her husband and he explained later.
Arranging interpreters for visiting staff such as the district nurse, is very difficult because no one knew at what time they would call. If they were ill only three of them could ask neighbours to call the doctor. One used a fax to the surgery but others had to wait until their partner got home or children visited them. Four of them said they sometimes understood their doctor but the rest did not understand their doctor.
Deaf people as home helps were welcomed and they wanted Deaf people working in Care homes. All felt this was a priority as more and more Deaf elderly people had to go into Care homes and became very lonely with
"... no communication to keep their minds up and no news around the place and then went down very quick, depend on person who is stronger than other as very few of them goes to see their old friends in Care homes and noticed that they do not treated them good as they just looked at them talking in sign language and talked each other then came to person when ready to go home and asked to go into office and asked how learn to sign and they are fed up as being Deaf has been in this country since.... people still do not know or not aware of Deafness which they are not happy with some attitudes of hearing people working in Care homes which it has put them off about thinking to go in when they could not cope at their homes."
If Deaf people worked in Care homes they all would be happy to go in and they would not worry about their children, since
"... they can carry on with their lives and their visits are not important because living in same communication shall improve health and happiness."
All of them thought they have a good life but they looked forward to when Deaf people would be working in health and in Care homes when they could get a place especially for Deaf people.
Elderly and Deaf in a Care Home: extended interview
This interview is presented as it was transcribed from the signing of the Deaf person and the Deaf interviewer. Although at times, this means that the structure follows BSL rather than English, it offers a much clearer insight into the situation than it would do if we translated it fully into English. The transcript is then something of an interaction between the interviewer and the Deaf person. The expression in English is treated as one would the vernacular of a regional dialect or accent. It is not meant to be, in any way, a reflection of intellectual ability or English skills.
This is a Deaf person who is in his late eighties. He has been living in a Care home for several years. He is a strong believer in the Deaf Community and was a very outspoken person.
He has been a widower for some time and had been living on his own for many years until he had an accident. His son decided that he should live with them. He enjoyed living with his son and daughter in law and one of his grandchildren. The family always made sure that he had transport to the Deaf Club and also gave him lifts to meet his friends. Then one day he was so shocked that his daughter passed away, and he became guilty for being alive longer than his own daughter. He watched his son in law and grandchildren suffering.
Shortly after, he told his son that he wanted to live on his own in a flat. The council offered him a one bed flat and he accepted the offer straight way because he felt there was a way to get out because of his guilt.
But he did not like the flat because the flat was on the second floor and had stairs and no lift to take him up or to down. He coped well looking after himself, cooking and washing. There were a Deaf couple who lived nearby and they visited him often and he did not feel lonely at all. The minibus came each Wednesday and he knew that he was going out.
[The following section is taken directly from the transcript of the interview and begins in the third person but ends with direct quotes from the Deaf man.]
I had a accident and went into hospital and then had all tests and the doctors in hospital decided that I could not look after myself and after some discussion with a social worker and agreed to go into a Care home. They say I shall never treat different from my own flat.
The day I went into the care and Social worker took me there in the car and then talked with the staffs there and they welcomed me and then gave lovely smiles and willing to learn sign language and the social worker asked me if I could teach them the language and I agreed. The social worker left.
A staff carried the things I brought from my flat and I went into my room and started unpacked and then trying to put things away then a staff came in and took it over and told me to sit down. I not aware what he really meant then, I just laugh at him and said I am not that old yet. The staff went and brought someone higher that this staff and had a talk with me and I was not aware why it happened and I told this person that I was agreed to come in and still able to cope my own life.
The next few days there were some problems and it was not the same what I had been told. I felt so helpless and unable to get someone to support me and no one able to support me to contact social worker and my family as I knew that my son would be mad if he knew this.
A few days later my son came and shocked to see his father crying and pleaded with son to take me out of the care and then my son reported to the social worker and then things were sorted out and then I told that the meals the laundry shall be prepared for me and can get someone to contact person outside the care and then one day I was fed up then asked one of the staff to ring to the centre to contact one of my friends and no one replied and I kept on asking one of the staff if he did ring to the centre and the answered was yes yes yes. I waited for a few weeks but still nothing then I thought why not write them a letter and lucky the letter arrived and my friend came straight way and shocked that I becoming lonely and explained that a minibus did arrived at the Care but the staff went and found me sleeping then told the driver I was not coming so did not tell me at all and I thought that no one want me now because I live longer. Lucky my friend told the driver of the minibus and made sure that the driver went inside the care and to find me sitting in the lounge room, sometimes awake or sleep so she tapped my shoulder and I was so thrilled and went to Deaf Club and enjoyed then asked the chaplain of the church at Deaf Club if there is possible for the chaplain to pick me every week because I could not able to go on public transport and then he agreed and now I very disappointed that there is no minibus provided in Deaf Club and it stopped the value visits in Deaf Club each Wednesday which all my friends going there and very upset for being left out. But I very grateful that the chaplain at the church at Deaf Club continuing taking me to the service and back home each Sundays and this is the only communicate I got is waiting for each Sundays.
There is a Deaf person coming to Care each week, teaching signing to staffs which I thought I can do better than this person but of course the person went to college, got qualification but this is my signing not this person and he can talk not like me. The staffs is copying his signing, I do not understand some of this stupid signings. I am upset that I had been living longer than others but they are trying to tell me what to do and they do not able to use finger-spellings the same as you (the interviewer) can do and I have known your grandparents and also knew you when you was born and you do understand how I feel and I don’t know what to do with my great signings and am still proud of my own signings and do not care how people think of my signings.
I am upset because the staff who learnt signing from the modern world and not understand what I am saying. Let me tell you that I was awake in the middle of night and am feeling really ill so I asked for a night staff to come into my room then I felt so weak and used my finger-spellings and the staff do not understand what I am saying. I had repeated for several times then felt that my life is ended but in the end the staff asked other person what I am saying as that person is not staff. He was in bed in other room and had to woken up to find out what I am trying to saying.
When doctor came along and I want to know what is matter with me but I am not happy that no one had told me what is matter with me just saying you will be okay and stuff me with all pills. I talked with my son and then he would do something and talked to higher person and then when he went home then the staff are funny with me because I think that my son tell them what is happening.
If the staff all Deaf it shall be a different story. I can find out what is matter with me or to find out what these pills are for. To find out who going to Deaf Club on Wednesday, who is ill, how are my friends etc. and I shall be better off than what I am today. It is very sad and am very angry that a Deaf person comes here every week and ignored me and walking with staff and if staff want him tell me what they want to say and then he talked to me just alike I was two years old. I told this person that I looked old but my brain is not old and the person told something to the staff and now I am very sad and to be honest this care home is nice place, clean, good food, some nice old people, one or two staffs are nice but this could be better than that because a Deaf person is coming here every week and should talk with me and should talk to me how I feel about my signings he do not live here the same as me.
I hope you will pass this information and to improve the situation and to make sure the right Deaf people with better training’s and to make sure we old people can be involved. I know better because I know what is going on here and what communication I need here not from outsider coming here and talking about where the sign comes from etc.
I want to see more and more Deaf people working here both in days and in nights because I need both in days or nights and want someone to understand what I am saying and perhaps - forgive me - if I want to say my last word who shall understand my last word to pass to my children I feel important people see any disabled people and make sure we all understand and I am worried no one understand me. Please, University, try understand me I want your help and improve services for people like me.
For most people this is a very moving story and it illustrates the real problems for an elderly deaf people. This is an area of work and support which is in great need of attention and improvement. We hope that the Deaf Studies Trust will be able to take this forward.