At what point, if any, do a carer’s needs supersede those of the person they care for in terms of whether the caree should have in-home support or go into a care home? I have had enough: feel totally trapped and cannot free myself of my husband’s needs who has dementia. I appreciate that the least restrictive option might be the in-home care, but that still effectively deprives me of my liberty whilst ensuring his. He can’t do even simple things for himself and clings like a limpet. I really can’t stand any more. I’m in the ninth year of caring for him since diagnosis. Any ideas?
Hi Liz, welcome to the forum. You CANNOT be forced to care for him.
Your first step is probably to ask Social Services for a Carers Assessment. Make sure it’s done away from home if at all possible, so you can be open and honest about how you feel.
He should also have a Needs Assessment.
How to go about residential care depends largely on finances. Do you have between you more than £46,000 in savings? (Yes/No)
Is he currently receiving Attendance Allowance or PIP, depending on his age?
Did you know that he was exempt from Council Tax from the day of diagnosis, and it CAN be backdated?
Are you aware of NHS Continuing Healthcare. If he qualifies, it would be free care in a nursing home, but it’s a postcode lottery.
If someone’s quality of life (yours) has deteriorated to the point where you cant stand it anymore, that is the time to look at other options .
Nine years is a long time to be caring.
Your needs are important too.
We all only have one life.
I often wish someone would write a book on this subject. Sadly, and unfortunately is to complicated. It’s all about human nature and expectations/perspective of others. it’s seen by many as our duty as a mother, father, husband,wife, sibling/s and friend/s. The truth is we can only go on as far. As our sanity and health dictate. Then there is the old guilt trip. You and your husband are living this situation. Therefore it’s your lives.
Do you really want to have care at home. Or would it be better to make the transition straight to a care facility. What do you think will work better in the long term. As it sounds things will get worse in the long term.
Yes, our sense of duty often clouds ideals of practical action. Since this is a married couple situation we can also consider those marriage vows: “. . . in sickness or in health . . .”
We need to be practical and consider what is in everyone’s best interests. If someone admits their spouse to a care home it is not as though they are abandoning them. It is acting in their best interests.
A care home will provide a much higher standard of professional care than you can, Liz, and you can visit as often as you like.
Therefore there is nothing to feel guilty about; you will supporting your husband in the best way.
If you run yourself ragged till you drop, you will be even less effective in caring for your husband. The noble thing to do is to obtain some assistance. There may be some initial reluctance from your husband to go into care but it is the best option for both of you.
The marriage vows:-
“To love and to cherish, for richer, for poorer, for better or worse, in sickness and in health……”
These apply to BOTH of you.
Whether together or apart, you still love each other, however to my way of thinking it is a “two way street”.
If one partner loves the other enough to do their very best for them, the same also applies to the other partner.
However, dementia robs someone of their ability to make rational sensible decisions.
Under those circumstances, surely the one with capacity has to make the best decision on behalf of the other person?
I know that I would have trusted my husband to do this for me, and vice versa. (Sadly, I’m now widowed).
Sometimes, it helps to think back to other family members who were very ill or had dementia.
We both had relatives with dementia who ended up in residential care, my mum in law was the best in the world, kindness itself, never a cross word between us.
Her dementia became so severe that despite father in law’s best efforts, in the end there was simply no alternative to residential care. It didn’t mean that he didn’t love her any more, it meant that she needed a TEAM of carers to give her the help she NEEDED.
You didn’t ask for your husband to get dementia, so you have NOTHING to feel guilty about.
What would you have wanted him to do, if the roles were reversed?