By Elizabeth Postle, RN, HV, FWT.
If you are caring for someone with Alzheimer's or dementia, the chances are that you have no time for yourself, are feeling overwhelmed, exhausted and frustrated and are just lurching from crisis to crisis. Our pages of advice on coping with caregiving should help you to feel calmer, more in control and proud of the way you are coping. We aim to help you to regain your quality of life, and enjoy some special moments with your loved one.
One of the first things that you might not realise is that, in all likelihood, much of what you are feeling is grief. See whether you relate to the feelings below, and then read on to find ways to cope below.
If you have any of these signs, you may be grieving. Many people don't realise that what they are suffering is grief when their spouse has Alzheimer's disease. Sometimes it is called "anticipatory grief".
1. Feeling tearful but not sure why?
2. Stressed and overtired?
3. Not sleeping well?
4. Not eating well?
5. Feeling a bit numb, or fearful or anxious?
6. Getting confused or forgetful?
7. Not coping as you used to?
All these and many more can be signs that you are suffering from grief as well as the day to day stress of living with a person with Alzheimer's or dementia.
Grief and loss can occur when the loved one is still alive, yet their personality and individuality has gone.
Your spouse with dementia or Alzheimer's is gradually changing before your eyes and is becoming more and more dependent. You grieve for the loved one you had, whilst caring for the totally dependent person they have become.
This long, slow loss of a loved one is a painful, difficult time when you are also coping with their home care.
They are still with you, they have the same smile, they may appear outwardly normal, but the ability to cope alone is gone and they become totally dependent.
The worst time is when your loved one does not recognise you or their children any more. It is a heart breaking time. Many family members find it too upsetting to visit when this happens. This can cause friction in families. It is another time to realise that people grieve in different ways.
There is grief because the person you loved, the personality, has gone. Yet the person is still there. Friends and neighbours don’t realise that you and your family are grieving, there is not the same support as when someone dies.
Your children are also suffering grief. They are gradually losing one parent to dementia, and the other is in a constant state of crisis, coping from day to day, and needs an enormous amount of support. Suddenly the roles are reversed and the children have to support the parents.
When the painful decision comes that it is no longer possible to cope at home and your spouse goes into care, don't feel guilty. Be proud that you and your family have coped for as long as you have. It is not easy.
The demands continue though. Daily visits to the care home, combined with the emptiness of suddenly being home alone can take a toll on the one left behind. There is a lot of advice and information in my book about making the most out of visits to the care home and activities you can do to help keep your spouse content.
It helps to accept that although your loved one is still there, you are nevertheless suffering a bereavement and grieving for the loss of your partner.
Instead you have a dependent child to wash, dress and feed. You are now a full-time carer as well as having responsibility for the entire household.
If you feel that some friends have deserted you, get in touch with them again. Some people are simply afraid of psychiatric illness and don't know what to say or do. So they stay away. It is important for you to learn to ask for help and support. My book will help you to do that, and help you to realise what an incredible job you are doing.
If you're feeling frazzled, depressed and unable to cope, my book 'A Healing Hug for Alzheimer's Caregivers' will enable you to take control, to cope with difficult situations with patience and humour, and to get some relief from the feelings of grief. Soon you will be able to shake off any feelings of guilt and be proud of the way you are coping.
Or scroll down to watch my video where I talk about caring for loved ones with dementia and visit many more pages of information about being a caregiver for someone with Alzheimer's.
Getting a diagnosis may have been delayed for many years and the knowledge of what is wrong can either come as a shock or a relief.
Many may find it difficult to accept something is going wrong, and are unable to ask for help.
To help you cope with your loved one at home – read
The following pages will help you recognise some of the symptoms and accept when it is time to get more help –
More Uplifting and Helpful Articles:
Read how our guest writer Ankita coped with Losing a Loved one to Alzheimer's
Anticipatory grief in the spouses of people with Alzheimer's is very common and often not recognised.
Alzheimer's support groups can be helpful when you are grieving for your spouse with dementia. It is good to talk to others who are experiencing the same problems and understand what you are going through. Your doctor or day care provider may be able to put you in touch with your nearest groups, or you can search online.
Find a support group in the USA
Find a support group in the UK
Australian support groups are listed state by state, so do an internet search for “Alzheimer’s support groups, NSW” or whichever state you are in.
Our free downloadable and printable document "The 10 Most Important Things You Can Do To Survive Your Grief And Get On With Life" will help you to be positive day to day.
The 10 points are laid out like a poem on two pretty pages which you can pin on your fridge door to help you every day!
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