Deciding To Try to Look After Someone At Home
There are several reasons why one might want to care for someone at home with dementia. Often enough, husbands and wives in particular, just cannot bear to be apart after so many years of marriage and family life.
The one left behind is bereaved and alone. The trek to the nursing home is long and hard. Being together is a good reason to “Hope for Home”. Long years of togetherness have been chosen and should not be given up lightly.
Sometimes, being at home may be worse for the person with dementia. This would be a good reason not to try. But there will always be risks with whatever we do, and when nursing very frail and ill older people it may well be best to take risks.
Survival in nursing homes is not good, and survival of people with advanced dementia in hospital is also poor. We have certainly noted that, in the end people do well at home and may do better there than in a home. But it will always be absolutely necessary to understand that caring for someone at home carries risks. They may die as a result. Having accepted that, they may turn out to live in greater comfort and for longer than they would elsewhere.
Everyone who cares for someone with dementia at home should have access to specialist advice and also equipment. It should be of a standard and availability that is no less than that which is available to patients with terminal cancer.
Given that it is often not of such an availability and standard, strong effort should be made to get nursing, GP and old age psychiatric services involved in such endeavours.
Carers should be aware that their health may suffer as a result of what they do. This may well be a right and good thing. For those who are married, the vows they took accepted that caring and loving may well mean that we are open to coming to harm as a result of the commitment that we make. Others too, including children, will have reached a point where their commitment to a person embraces the possibility of risking health for their welfare.
Many carers believe therefore that it would be right to risk ones own health for the well-being of the person with dementia. And yet this must always be carefully balanced against the other responsibilities that people have, to children, grandchildren and many more.
Most importantly, one must not be reckless. With modern aids and help from others, there are few circumstances where health is clearly risked. So with careful planning, while ones personal life may be hugely changed, risk to ones own health should be minimised.
And yet perhaps, it would still be wrong to risk the marriage of ones children or the welfare of grandchildren for all this. Take advice, plan and think it through. Be careful, but be adventurous.
Identifying the Main Carer
In the end there will be one person in overall charge. Often a spouse, sometimes a son or daughter, sometimes a friend. Someone will carry the can. It is clear that that person will almost always need to be in quite good health, committed to the task and able to give up enough time to the job in hand.
That person should usually have, or be able to develop a little team of support and help that will carry them through and enable them to deal with crises etc.
Is the Person with Dementia Able to Help?
When someone with dementia is living in a family, it is very clear that the process of care will work if the family can survive. There is therefore nothing wrong with some of the carer time going into ironing or hoovering of a family home.
There should be a little balance here, but it is the case that people dying with dementia have continued to contribute in a very good and positive way to their family during their last illness.
In this way the person with dementia can still have an important role to play within the family, which can enrich the experiences of carers and other family members and friends, especially children.
Big Houses or Small Flats
Wherever “Hope for Home” style dementia care is done, it will be necessary to rearrange furniture and other things to meet the increasing dependency and care needs of the person with dementia.
Putting a bed in a downstairs room, for example, is not enough. Other things must be moved out to make space. A hospital bed and a hoist needs a lot of space, especially when it is set up next to a commode and a comfortable chair.
So you may need to get rid of some cherished furniture, at least as far as the garage. Having said that, we have seen terminal care of dementia managed in large 5 bedroom Victorian houses, as well as small cottages and modern one bedroom maisonettes.
The only requirement is that there is enough space to move around furniture and redesign the way in which the house runs. This is very hard for some people. Years of things being in one particular place is all too much. But if you can move things around and get rid of the odd cherished cupboard, things are much more manageable.
Having a bed and chair on the same floor as the normal living area is important. Someone with advanced dementia will be very cut off if they are nursed upstairs with all the cooking and activity going on downstairs.
We think that it is usually best therefore to have the bed downstairs. Most carers do this and find that the person with dementia can then go to bed for a few hours in the day as they get weaker and frailer, without having to be left alone and too cut off.
Aids and Appliances
Getting the right aids and appliances is absolutely essential to the care of people with advanced dementia. The good news is that aids are becoming more available and that they are getting better.
Hospital beds, hoists and other advanced aids are easier to obtain than before, better designed and a real asset. Beds that change position, that help you to sit up the patient using inflatable backrests, or other raising mechanisms make a real difference. They enable a sick person to be moved and to have their position changed easily and frequently.
Our carers have found a wide range of appliances to be useful and the list below is a summary of the most popular items. Most will need some. No-one will need everything. Each circumstance must be tailored to the needs of the individual.
Some carers have found what they need by looking through aids and appliance catalogues. Others have got them from appliance shops. Ideally all these things should come from the Health and Social Services.
But carers do find that these services are sometimes slow and patchy, so that if you expect everything to be provided, it just doesn’t work. At other times, Health and Social Services provide excellent and very prompt care.
The Most Commonly Needed and Recommended Aids and Appliances
- Walking frame
- Hospital bed with adjustable height
- Mattress elevator for sitting up in bed
- Shower bath aids
- Special mattress
- Continence pads
- Continence sheets
- Other continence aids
- Toilet raiser
- Adjustable Electric Chair.
- Electric Hoist.
- Shower Wet Room (flat floor shower is very important as it is very hard to get a disabled person into a normal shower cubicle)
- Shower Stool
- Other continence aids and better trained advisors
- Pressure mattress
- Grab rails
- Stair aids /lift
- Properly adapted cars (Disability living can help with this)
- Appliance shops
- Skin care equipment
- Assistive technology
- Red Cross (a useful emergency source of wheelchairs and other help in some districts)