How to introduce respite care

[Rosalind]

My husband has recently spent a week in hospital, and even with 3 hour round trips daily for visits the time I had at home alone was a blessed relief. I had not had a break for 8 months, and was very close to the end of my tether - I do not have the temperament to humour someone 24/7, and that is what he now needs. I still cannot resist querying his claims such as he read in the paper that there is not to be any more building in the county, repeated umpteen times in quick succession, and absolutely not true. It is so wearing - and anyway he barely reads papers now, and does not remember what was in them.

Previously I have had breaks away, with home care, but he now is not up to that - can't work the grill, can't restart the tempramental boiler, and can't remember the fact that the boiler man had called and been in the house for some time.

Shortly I need to go on a week's course, so the CPN has arranged for him to go into local Order of St John home. I have been taking the angle that as he has just had an operation I don't think he should be left alone, which he agreed with pre-operation but now is baulking at the idea.

Apart from anything else, this course is to do with a business I am setting up, which will mean my working round the clock for a time this autumn, and then being away from the house far more than in the past 4 years, so I think he will need to go to some sort of daycare for a few days each week, and I thought this could pave the way. This is a last chance for me to do something for myself, and top up the family coffers that have been severely depleted since being made redundant 4 years ago, and I will not be made to feel guilty about going for it. I will keep him living at home for as long as possible, but have been the main breadwinner for all of our marriage and am determined to have one last crack at profitable work.

So, how do others suggest I play it. What if he absolutely hates the place he goes to? (No real reason why he should, he loved boarding school and National Service, and talking to people, but he now only ever wants to be at home, with people coming to him).

 

[rummy]

HI Rosalind,
I think you must follow your dream and arrange your situation to suit it. It is important that we keep our AD loved ones safe, fed, and looked after but we do have lives to lead too. We don't get many "do overs" in life, so if you have an opportunity, you should do it. It will also make you a better care giver because you are fulfilled and secure.
Good luck with everything,
Debbie

 

[Rosalind]

Thanks, Debbie. You have strengthened my resolve, but it is still difficult to put the case to husband. Tonight, for the umpteenth time, he pointed out that the moon was visible. Aaaaagh. The so--ing moon appears every so--ing night when there are not clouds. Will proceed, but still feel I am an unfeeling cow because I don't want to spend every hour listening to the same banalities.

 

[connie]

Rosalind, you are not alone in your feelings. (Sorry I can't comment about respite as it was one area I had no trouble with), but I can commiserate with you about the endless repetition.

I agree that you must try to achieve your own goals, whilst trying to juggle the needs of your husband. Not an easy task, but you owe it to yourself.

 

[Brucie]

In your situation you need time to do what you need with your new business, and any distraction [let alone repetitive ones] is a major frustration, so we all understand your position.

Just take it day by day.

The so--ing moon appears every so--ing night when there are not clouds

This is where it helped me to join Jan in her world, rather than get frustrated. It is also where people with dementia often cut right to the chase.

By that I mean that we take so much for granted in our busy [often] doing little of importance 'normal' world. The moon IS beautiful, and it IS visible when there are no major clouds covering it. Yet we just assume it will be there and may not even look.

Our current house is way out in the country and there is no ambient light, so the sky is crystal clear at night. Moon and stars are fantastic, and Jan and I would always remark on them - as we would abroad in similar circumstances. Would that she could even see them now, let alone talk about them.

Having said all that, we all have our subjects that raise the hackles if mentioned too often. I find that happens when 'normal' folk even mention soccer. Such a bore.

 

[Rosalind]

So Connie, how did Lionel take the idea of going somewhere for a few days? How did you make him aware it was going to happen, etc? This is where I think I will have big problems.
He did go to a day centre 'club' twice, and refused to go again, on the grounds that the people were bonkers and the room they sat in was very small. According to the CPN other people really enjoyed the place, and the group was made up each day of people at about the same level - you would have thought having an new audience for his stories, who did not remember being told exactly the same thing before, would be great, but no.
Husband is feeling low today, but thank goodness prescription for anti depressants has arrived. He was on them before going into hospital, but did not take any while in there and the hospital lost them so since I collected him last Monday he has not had any. Then had to convince surgery that he was not taking huge quantities in order to get a new prescription.

 

[connie]

Rosalind, everyones experience is different, as people react differently.

Lionel, from the very begining, responded to: Please do this for me. (I need a break, or If you go to the day centre I can do chores so we can have "quality" time together). As he was so aware, in the begining, I never really had a problem.

Funnily enough he questions things far more so nowdays.

 

[Michael E]

Rosalind hi,

It will probably not help but your husband sounds like a mirror image of my wife - the symptoms are pretty much the same. She too refuses to go to 'meetings - clubs because they are all 'barmy' there.. Has deep depressions, tears, the repetition drives me nuts and the inability to do anything at all breaks my heart. Got her to a huge supermarket yesterday - trailed around after me but seemed to quite enjoy experience.

That you are doing a course and setting up your own business leaves me amazed at your courage and determination. Just wonderful. I am certain that it is vital for all of us not to get too uniquely involved with the problem - hard to do but getting away from it mentally is vital... You seem to be doing brilliantly. It is really a very difficult and challenging problem living and coping with somebody with AD - I think.

love

Michael

 

[Rosalind]

This business I am setting up is a branch of an American franchised gym - no men, no mirrors, no classes, and in and out in 30 minutes. I started going to another branch in January as was very stressed and overweight. Have to say it has helped the stress a lot. I hardly ever wake in the small hours worrying about everything, now. Weight is a bit better, too. A friend was made redundant at Christmas, I tentatively suggested we might look at such an enterprise for our local market town, and it just happened.

I am not a gym sort of person - have not been in one since school, when it was compulsory, but can just about grit teeth (and clench muscles) for 30 minutes.

Dunno about being courageous - some might say daft, others query the lengths I am prepared to go to in order to make myself keep doing the exercises.

But it will be nice to spend several hours a day with other people, and may well make me less snappy with husband, and if he is not mad about day care then he just might be a little easier to live with when he is at home!