Expert: Mary Gordon - 2/2/2008

Question
Hi, My Dad is 91 and has just been formally diagnosed with small vessel disease dementia and involutional changes in the brain. Until now he has lived with my Mum, who is 85 and has severe heart problems.He is often confused, has had hallucinations,some incontinence,obsessions, disturbs my Mum's sleep and has frequent falls.Mum can no longer cope and we are in the process of getting him into a nursing home here in the UK.At what stage do most people give up and admit they can no longer care for their loved one at home? We feel such overwhelming guilt at not being up to caring for him any more. How on earth are we going to tell him he is not coming home from hospital where he is now? Thank you.

Answer
Hi Susie,

I know this is breaking your heart, but sadly, you have to think rationally about this situation. The best choice for everyone isn't always the one that is emotionally most appealing. Loving your father means looking out for his best interests, his physical well being and safety, as well as your mothers. If she can't cope with him, if she's stressed, not getting enough rest, overwhelmed, unable to supervise or deal with his physical care, she will end up ill or worse. If she becomes unwell, everyone will be in crisis, as the family scrambles to find a last minute solution.

Don't feel guilty. Your choices are limited. The reality is, she can't look after him at home any more. His care will actually get more difficult from this point on, as the incontinence becomes worse, and he begins to have trouble walking, eating etc. I know you know, he will need supervision and support 24 hours a day, 7 days a week, 365 days a year. In a care facility, every 8 hours, they have fresh staff, who have come to work well rested and ready to face any challenge. They have lives away from the caregiving, time off for themselves - they can take a holiday, or call in other staff if they are having a problem with a situation. The care facility is also set up to make caregiving easy - with special railings, hoists, special bathrooms, all kinds of fittings and equipment. They can also offer special diets to suit someone with health problems or difficulties eating. There will be social activities and leisure activies that he can participate in - all these things are next to impossible to offer in a home environment, especially where the principle caregiver is elderly, and may find just looking after themselves a growing challenge.

I know you wish things were different - but they are not - so banish the wishful thinking. It is what it is. Most families start to have a terrible time coping when the person starts to become incontinent, but sleep problems are a major reason for having to place a person. After all, being well rested helps all of us put up with challenges - but if you can't even get sufficient rest, your ability to cope just spirals down. Your poor mother!!

No one can love him like you can, and that is the important part. To visit him,  to see what you can contribute to his happiness and peace of mind, to his quality of life. It doesn't mean family members have to be the ones sitting up all night with him, changing the wet sheets, or trying to get him into the bath.

Confusion can be your friend in all of this. He is unlikely to really understand where he is or why. He may not even be completely sure where he is right now. My mother in law wanted to go home, but we quickly discovered she didn't mean her apartment or the marital home (both of which she'd forgotten). She wanted to go to her parents home, sold 60 years before, where she thought her parents and sisters were waiting for her.

There may not be any point in talking to your father about the coming move. If he has memory problems, he is unlikely to be able to retain what he has been told, or understand what it means. It is probable, all you will do is upset him for no reason. He has no insight into his own problems. When you see him, you know he is cognitively impaired and hard to look after - but he can't see what other people see, much less understand it, or grasp the burden that is falling on your mother. If you must tell him, you must be very matter of fact, and not get into a emotional argument.

If it were me, I would not make a big fuss out of the move. Its often a good idea to do the packing and arranging without the person present, since they find all that action upsetting and confusing. Pack and move whatever needs moving to his new room in the facility. Unpack, make it as comfortable and homey as you can. Then bring him to the new place, stay with him a few hours, and go home. Don't let him see you upset - its like introducing a child to a daycare or school - if a child sees mum all distressed, they will become upset and frightened.

The staff at the facility will be able to give you some advice on making the transition smooth. They are used to seeing this, and are very likely to have some compassionate insights regarding what both you and your father face.  People almost always adjust quite well, much faster and better than their families expect (or fear). When you know he is settled, you are going to feel so much better. So much worry will be off your shoulders and you will be so glad to know he is safe and well looked after.

I promise you, as someone who has been through this, this is the very worst part - when you are at your wits end, struggling with the decision, and fearing his reaction. Its sad, but it will be better once you make the move for him.

Thinking of you. Some less stressful days are coming.

Mary G.
Toronto