When confronted with the reality of Alzheimer’s disease, there is often uncertainty about what to do or what not to do. Our instincts are not always right and it may be worthwhile to consider the following:
Don’t ignore memory loss – Memory loss that affects one’s functioning is not normal – even in elderly people. There are simple tests available which most GP’s can do to confirm whether further investigations are necessary or not.
Don’t be afraid to seek help – Treatment is more effective in the early stages and using support systems is essential for the caregiver. There are some treatable causes of memory problems and these need to be investigated
Don’t feel guilty – Feeling guilty is very common in caregivers. Sometimes difficult decisions have to be made. It is important to remember that at some stage it will be best for both the patient and the caregiver if admission to a specialised unit is considered.
Don’t overestimate your loved one’s abilities – The reality of the illness is that they lose the ability to function as before. This can be very frustrating to the caregiver, but has to be accommodated.
Don’t ask, rather tell – As your loved one’s memory and concentration becomes poorer, it also becomes more and more difficult to make decisions. Rather avoid frustration and conflict by then making some decisions for them.
Don’t carry the burden alone – It is extremely important to involve your children/other family members – even if they do not want to believe that there is a problem.
Don’t try to argue/use logic – The ability to argue logically also decreases. It may be better to rather just agree or be much more subtle in one’s approach. Distracting techniques could also be of value.
Don’t forget that you need to take care of yourself as well – 70% or more of caregivers eventually develop depression. You have to take care of yourself!
Don’t give up hope – There is ongoing research in the treatment of dementia. We are substantially better off now than 20 years ago, and 20 years from now we will be even more advanced in our understanding and treatment of dementia.
Do get as much information about Alzheimer’s/Dementia as possible – Read up on dementia as much as you can. There is a huge amount of information available on the internet and other sources. Knowledge about what to expect and how to deal with common problems is essential, because for most this is uncharted territory.
Do plan for the future – The reality is that things will never go back to “the way it used to be”. Alzheimer’s causes major changes in many areas of one’s life and you will have to adapt. This means that decisions would have to be made regarding future living arrangements as well as financial matters.
Do understand that he/she is not “just being stubborn” – Sometimes you have to repeat yourself many times. Sometimes the questions are asked repeatedly. However frustrating this may be, please remember that your loved one is not just being stubborn or not trying hard enough – they cannot help it!
Do accept that you cannot be the perfect caregiver – You will make mistakes. Sometimes you really won’t know what the right course of action is. Sometimes you will be frustrated and may respond in a way that you normally would not. Just remember that you are just a human being, and dealing with Alzheimer’s can be draining emotionally.
Do come to terms with the fact that your relationship will change – One of the most difficult aspects of dealing with the illness is that your loved one’s ability to function interpersonally will deteriorate. It does eventually affect the ability to relate on an emotional level as well as on a personality level. It may be difficult to come to terms with the fact that the physical features do not change, but the personality does.
Do step in with subtle measures to help – Trying to do too much, especially in the early stages, will lead to conflict. But understanding the limits in the abilities of your loved one may help you to assist or make things easier without appearing to interfere. Labelling cupboards or doors, leaving obvious reminder notes or making sure there is a message book at the telephone may help.
Do consider “therapeutic lies” – It often does not help to contradict the patient with dementia. It may lead to distress or irritability. Sometimes it may be helpful to play along without affirming incorrect beliefs. For example, your loved one may be upset that the children “never come to visit”, when in fact they regularly do. Rather say something like “I have spoken to them and they are coming in a few days”, than telling the patient he/she is wrong and unfair to say that.
Do treat with respect – People with Alzheimer’s realize that they are not able to function as before – especially in the early stages. It is very important to keep them involved in the tasks they are still able to do. Asking them for their opinion or advice on issues will also help them feel that they are still needed and part of your life.
Do consider respite – Feeling guilty is one of the most common issues with caregivers. This may be about feeling that you are not doing enough or sometimes becoming frustrated etc. Caregivers often feel that they cannot leave their loved one alone or that they are the only ones to be able to take proper care of them. But the reality is that at some stage you will need a break – even if it is just for a cup of tea with a friend or maybe a weekend away with the children. There are various options for temporary home-carers available and you owe it to yourself to at least explore this.