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 Need Support and Guidance 
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Need Support and Guidance
Tara,
We are in the same circumstance! My dad's birthday is next moth, and I'm planning the same thing! I know how hard it is for you to go through the milestones without your mom. My daughter's 10th dance recital was a few weeks ago, and as I sat and watched, i started tearing up thinking how proud my mom would have been to see my daughter grow as a dancer! he made it to the first 8 years, bought a ticket last year, but was having a "bad day". This year we knew she wasn't going to get there.

Take joy in your children's accomplishments...knowing that is what your mom would want for you and your kids!
~Heidi


Sun Jun 03, 2012 10:16 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Need Support and Guidance
Dear all,
Your posts touched many of the issues I deal with, too. It is especially reassuring to read that others with LBD fall into that deep sleep that can't be awakened. My hubby will sleep 2-3 hours, and just can't be awakened. If there were an emergency I would have to somehow drag him out of the house. This will go on a couple of times during the day, then at night it will be a struggle to get him to bed and to sleep so that I can sleep. Our children help me with this, but, as so many above have noted, they really can't get the emotional toll caring for their dad takes. They all go home, but I live here, even when it's someone else's turn to be his caregiver I see his confusion and feel his distress. And every day there are odd hours when I am the caregiver, there's never a complete cessation of stress as long as I'm home.
An imperfect solution is regular trips away. I go somewhere every 6 weeks. Nothing fancy, I live in California and can take a little road trip to many different destinations to stay a couple of nights. It's more to walk around freely, read a book uninterrupted, or give myself some relaxation time. In between i might occasionally take a ride to the local park, sit in my car with a book, magazine, or even bills to pay, and enjoy being undisturbed for an hour or so.
I seriously considered placing him in a dementia unit, there's a very good one close by. I ran into stiff opposition from my children, and the prospect of a split that would never completely heal overrode the advantages of placement.
I hope all of you caring for a spouse with this cruel and ugly condition will remember to care for yourselves too. Sayings get to be cliches by being true and universal. You can't take care of the one you love if you don't take care of yourself. And I'll add another one: Children dealing with the serious illness of one parent are not well-equipped nor willing to see what the stress is doing to the second parent. It's exceedingly hard on them, all they really want is for you to be the strong figure of their childhood so they can grieve the passing of the LBD parent. They'll take many physical chores off your shoulders, which is a great comfort. But it will be hard for them to help you with your emotional pain. Just a manifestation of being human.
So do take advantage of opportunities to ease your own stress. This board is so valuable in that respect, an army of experienced caregivers ready to respond to questions and problems, ready to give each of us input from different perspectives. Try and get away, to nowhere if you must, for only an afternoon if that's all you have. You will return refreshed for the personal space. I am continually learning that, as intense as my own experience with my LO is, everyone involved is having a different intense experience. I've had to give up talking to my kids about their dad because they interpret my comments in the light of their own expectations. It makes for way too many misunderstandings.
Blessings to all of us caregivers. Merely by virtue of following this board we demonstrate our passion to do the best we can, for those we love and for ourselves.


Sun Jun 03, 2012 11:59 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Need Support and Guidance
I'm so sorry that your kids cannot tune into your emotional needs as well. If placing your husband is something that must be done for his sake and yours, they will just have to learn to live with it. It's not fair for you to sacrifice your emotional and physical health if the CGing is too much for you to handle no matter what anyone else thinks about it.
I was a CG for a parent, not a spouse, so it may be different, but I think I can honestly say that my son who was living at home at the time had a lot of sensitivity and insight around what I was going through in being a CG 500 mi. away and then driving every few weeks and staying away to take care of my dad, although he was in an ALF. My son was very emotionally supportive and even took time off his summer job and college classes to relieve me a few times and go stay with my dad when I was too exhausted to make the trips.
If your kids were to stay with their dad and be his CG for a week or so with you not around, I think they might have a whole different view of you and what you are doing AND what their dad's needs really are. You can't get that perspective without "walking a mile in the other person's moccasins". Have you tried that yet?
Big hugs, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Jun 03, 2012 12:42 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Need Support and Guidance
You're quite right. We've tried it three times, I was gone almost a month last time. Since there are four of them, all actively involved and genuinely caring, nobody really gets the full treatment. I have noticed they're more in tune with the severity of his condition when I return. But it's just different for a spouse. I know I'm very fortunate to have their input and support. Many here are dealing alone with this overwhelming situation. At this point it's just too hard to justify his placement in the face of 4 people's strong opposition. I'm planning a series of trips away, about 3 weeks in length and 4 weeks apart. I've always loved road trips and I want to see these United States, why not now? We'll see how they feel in 6 months or so.
I've written before that this is not one disease but thousands of different ones depending on the parts of the brain affected. The same holds true for families, our complicated interactions are severely impacted by the form of LBD our LO suffers. We surely learn from each other's experiences as described in this forum, it is so helpful.


Sun Jun 03, 2012 4:44 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Need Support and Guidance
Challenged,
I am so sorry to hear that your children are not fully supportive of your situation!

Sending you hugs!

I have so much respect for the care giving spouses out there...your strength and dedication to your LO's should be honored! I hope you take comfort from all the support here, and know that someone is thinking of you :)


Sun Jun 03, 2012 10:43 pm
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