In Darkness Let Me Dwell....

[Anne Bonny]

If you are into the music of the 16th century composer John Dowland and have visited YouTube you may have come across Ellen Hargis singing this wonderful lute song of Dowland's. For myself it suits my current state and range of emotions - very soothing for an anguished soul. I am on a roller coaster passing through a range of emotions from different stressors and pressures in my life primarily related to my wife's deteriorating mental state. There are flickers of a desire to crossdress from time to time even still. Amid thoughts of my Queen Anne Flintlock which are not serious, there is too much of life and reasons to continue. God has set his cannon against self slaughter, like Bert Reynolds and Dom De'louise in the movie The End, rather dated from the 70's but still very funny at times - I do not want the end to be painful. Life for all of us will be over in about 80 years on average anyway why not enjoy the ride, at worst I could become a beach bum on Maui - could head out on my tiny 25' sailboat but that would be rather foolish, need about 35' at a minimum to venture into the that cruel mistress of the sea. I have picked up my guitar again am working on the beautiful piece the Lacrame Pevan or Flow My Tears, the most beautiful renditon of this also on You Tube by Valeria Mignaco of Lutevoice about 4 years ago? Oh well, I have no 16th century gowns anyway.... Anne

[Absaroka]

Hang in there Anne. This is a very difficult time of life, but this too is passing as we speak.

Zari

[Anthony Simon]

At one point, basically sad or melancholy music was terribly important to me - like balm to the soul and confirmation that other people felt like me. It was British folk-based music that did it for me. I still ask "where's the pain" in music when I doubt it has reality.

On the other hand, when it comes to dressing up, there can definitely be too much pain for me. It just comes out when I get dressed up and wrecks the whole thing (like I can see it all over my face, which is not a pretty sight).

Not a pretty spot you're in Anne. But still, keep on plucking (to make an awful pun)...

[Carol Ann]

Anne,
I am very sorry for you and your loveing wife but it is a problem I have faced everyday for the pass 3 years.

No music for me just keep very busy doing the house work and everything else. My only true outlet is Carol Ann and trying not to think about it. When it is time it will be and then I will worry about it.

Keep the faith hon I for one love you

[Anita]

Hi Anne--
I also have an ailing partner, with chronic fatigue and a range of other disorders. Mental deterioration is a tough one to face, though. I would have a hard time with that. Keep your strength up in any way that you can, including listening to 16th century composers.

[Stephanie H]

Please stay strong and commited to you well being.
Smile ever day and say to yourself, Have a nice day and they will begin to occur

[Anne Bonny]

My wife's mental state can turn from good to bad and raging as I call it rather quickly. the trend downward is a broad average as well. So many people suffering and coping. There is always a faint, dim chance a medication will be developed to reverse all of this - but we all know the chances are slim and none which keeps that hope grim. Till then we do our best, step up our careing to optimize our situation and that of our loved ones as best we can. Marriage is a sacred bond, a noble call to honor and true love that is strong and selfless, even sacraficial. We can separate ourselves - compartmentalize and reward ourselves richly because we caregivers deserve it. Hence things like for myself, sailing, music, tinkering, listening to music, blogging, and even crossdressing if that helps, jogging, walking the dog, paintng, strolling on the beach, eating a burger and fries with a shake.... The drive for crossing into the femm flickers still in thoughts.... I suppose it would be a sign of normalcy returning or that I am coping well. Anne

[Anthony Simon]

...walking the dog, paintng...

I kept reading that as "walking the dog, panting...". That's my sense of humour for you.

It might be better, albeit in small way, to take up some active work away from your wife. Just for a couple of hours a week, voluntary work or something like that. I know that's kind of counter-intuitive and goes against the fact that your wife can't do anything (so, maybe, why should you?). But I just feel it might give you the necessary break from the "waiting for it to get worse" situation you find yourself in with your wife. Just a suggestion.

[Davita]

Anne, I'm agreeing with Anthony.

You need a breather for yourself. You can't be at your best if you don't have a chance to regenerate. You have to get away from it all... Again, as Anthony said, even for just a few hours at a time.

[Anita]

To the forum--
I'm sorry, but Anne's post here just "went away." This is the second time this has happened. As a moderator, somehow I overwrote Anne's original post here. Not sure how it happened, as I was not quoting her post. But unless you've got it on a Word document, Hon, it's gone to the great Ethernet in the sky.

[Anita]

I also lost my post in the process.

What I was saying was that I've been in similar situations to yours, Anne. Three times--an alcoholic invalid, a suicidal friend who could not be left alone, and my current partner, who has chronic fatigue and mental dysfunction when fatigued.

For me personally, I need at least two days to really get away from the situation, and have a true break. One day involves me unwinding from the stress. This is a whole process in and of itself. Then I get a good night's sleep. The next day is unscheduled, right from the beginning. That is the day where I actually relax and do something enjoyable.

It's probably not economically feasible. But if you can only have one day, then I'd suggest starting the caregiving the night before. Then you can wake up to an unscheduled day, just like the above example.

Having someone with alzheimer's is much tougher than any of the three situations above. But I know something of what you're going through.
And I'm sorry about that post.

[Anthony Simon]

I think Anne's post said something to the effect that money was a problem but that taking a break did work although her wife didn't like it.

If I was to say, I'd guess the problem with your girlfriend, Anita, is just being fed through you. Like she's chronically tired and some of it is coming out in you needing a break. I don't know, but some of what you've told us about her family situation seems likely to wear anyone down.

[Anita]

Hi Anthony--
Your post reminded me of a point I left out of my re-doing of the above post. Anne was also talking of how taking a break just meant more catch-up when you did come back. So it was easier in some ways to just stay in there with the daily routine.

There's a strong tendency to do that in these caregiving situations. It also applies to households that are financially strapped. My brother and his business partner work 7 days a week, 10 and 12 hours a day, trying to keep their construction "empire" afloat. When asked about breaks, my brother is very cheerful in saying that it's easier to keep the shoulder on the wheel at all times. If he doesn't keep his finger on the pulse, a crisis can blow up in his face on any given day. He and I recently took one overnight visit to see our sister and BIL He never let the laptop get cold, and the cell was always in use.

It's not good for us to be tied to our caregiving or money-making like this. I don't think that anyone would say it's healthy. I do know from my experience with my current partner that it is much easier to be on top of the situation, though, then it is to come in from the outside every day or so. That drove me nuts, trying to take care of her from a distance. When you're right there within shouting distance, little incidents can be taken care of immediately. They don't become Big or Bigger incidents.

I also wanted to say that the experience of taking breaks is my personal take on it. Anything less than a whole day is not worth it to me; I don't get any relaxation out of it, so why do it? Going through the motions of getting away doesn't help, if my mind doesn't let go. I can concede that others might be able to do that, though. It's better if one can do that, for sure.

We tried to find help with care through LeeAnne's Medicare and Medi-Cal, but that has not worked for us. L's disability check makes her too "rich" for such help. It was for that reason that I moved in with her; she needed fulltime help, and we couldn't afford it any other way.

Your situation is unchanging, Anne. That is, it may get a little better some days, but your wife isn't going to regain full functioning. I do get a break if LeeAnne stays up all night--she can slowly build up enough energy that way to go to doctor's appointments the next day, and she can get around somewhat normally. But we can only do that once a week, twice at most. And it's not a guarantee--she might lift a pan out of the drawer at the wrong angle, and it puts her in bed again for eight hours. But it works most of the time. I'm also able to go out and work all day long, so that is my 'break.' She's asleep most of the day, and we set up anything she needs the night before.

[Anne Bonny]

That's fine Anita, Anthony... Can't remember exactly but just agreed that these were very good recommendations and that I agree with getting away to work. It is good to help others, or just to work I know when I am in my shop the stress falls away and time slips by using my mind to solve problems or to be creative. Playing my Guitar or my lute - Renaissance instrumental. Money is not really a problem for me God has richly blessed me for now, but I am a very frugal steward of that bounty. I do need to let go of the cash to pay for the respite, the lady from my church needs the money, I should use her more often and I have reached the point where respit is required. I am glad I have the help of our teenaged sons who are very skilled at the guitar and piano, they have their own band and have even played with the youth symphony when they played a benefit. Working on my sailboat does the same thing. I know desires to crossdress are coming back - a good sign? But have not because it may upset my wife in her fragile mental state, and I am never sure what she may say about it in the presence of others, though her speech is sometimes bizarre making no sense yet it is probably better I hold myself back or under dress. It is a severe knockdown for me when she declines reaching new lows and staying there longer. It is dying in slow motion right before my eyes. In Darkness let me dwell... there is sweet solace in that music for those experiencing real pain in their lives.

[Anne Bonny]

Anita, There is a real understanding between those in our situation, a kindred spirit that people outside our experience can only imagine in their compassion for us. We do everything twice or sometimes simultaneously doing for ourselves and for our loved one - sometimes first for them, then for us - this is selfless, and sacraficial love bearing with their infirmities of which even we are outsiders to what they are experiencing in their personal suffering and hell. How can we possibly imagin being incapacitated and dysfunctional. Pain. I think back on - well the idea - when tonsils were removed (I still have mine) that "you can eat all the ice cream you want!" In the same way we have every right to have every pleasure we have access to or desire. I have bought a sailboat and feel no guilt about it at all - I was well able to afford it, and both of us enjoy sailing though we havn't in a while. We are bearing a heavy burden spiritually I see that I have been given this because perhaps I have the right characteristics to fulfill this mission, perhaps I have something to learn - cruel way to learn but in my faith we are all only traveling through this existence briefly, everything is temporary - our means, our possessions, our health, everything. We are blessed while we have them to enjoy, but eternity it's ultimate finality beacons and will come to us all.