To My Fellow Female Caregivers - A Night Out

[KDK513]

All right, I did it and it took forever. I am bathed, waxed, plucked, blow dried, curled, made-up, tucked in, pushed up, and poured into my black skirt and random top. I am jeweled (ha), stockings, no less, high heels (you know, the kind you can wipe out in) and ready to go! Yeah! This is the BIG fundraiser in Cincy. Hard to believe this used to be my life. I asked my 16 year old son if I looked OK before I left and his remark was," Mom, I'd forgotten you looked like that!)" Guess I'd better get my act together.

There is a point to this. In my old life I used to raise money in the community and at our children's schools. Now I am just a visitor, a guest. Everyone wanted to know how Dave is, sort of, clearly he was not with me, hmmm. I gloss over it with most, they are relieved to learn we are 'fine'. Good friends are subject to the truth. He is sick again, terrible spasticity, spirits good, just miserable and in pain. Who would have thought that not walking was the least of it.

I suppose everyone is familiar with the phrase "what goes around, comes around". In 1996, 1997 I served as President of the Association Of Volunteers for the Convalescent Hospital for Children, Children's Hospital Medical Center,(CHMC) Cincinnati, Ohio. The projects that we supported while I was on the Projects Committee and Pres. were: to measure the effects of botox injections and the baclofen pump on spasticity in children, and measuring the outcomes of extensive, immediate PT in children with traumatic brain injuries. I can still recall asking numerous questions at our annual meeting about the cause/ effect of these conditions. Who could possibly know this would eventually impact my life!

These Docs were there tonight! They are both Physiatrists who have provided us with valuable support and info. Fortunately they remain involved in our lives, we are so blessed in this regard.

The current project, which I have seen evolve, though sadly had no part in is the introduction of CHMC - PT, OT, and Aquatic Rehab at the Drake Center in Cincinnati, where Dave (husband) continues his rehab. The goal is the positive treatment associated with aquatic rehab and the integration of Children's Physiatrists' and the transition into adult treatment. I suspect that puberty plays havock with spasticity. (excuse SP) Drs. Doug Kinnett and Linda Michaud concurred, I have learned much.

Life goes on, Dave needs more catheters, urinals, water, the fan on, off, blankets on, off. I'm changing to PJ's, washing off the makeup, checking the monitor and settling into the guest room, my bedroom, since SCI moved in, sigh! Night all, till tomorrow which is only a few hours away! kathy

[marmalady]

Kathy,

I know exactly what you mean! Feels like you're in a movie when you get dressed up and 'go out'.

And being involved with fundraising at the level you were, and the knowledge you gained; almost as though 'someone' knew you'd be needing that knowledge someday. I had the same thing happen; about 10 years ago, I worked at Kessler Institute, as secretary to the Medical Director; the facility I worked at dealt mostly with orthopedic rehab and stroke rehab, so I had no knowledge per se of SCI; but, when my son had his accident, I remember thinking to myself that there was something out there to help him (i.e., rehab), and that it wasn't 'the end'. It got me through a lot of rough times.

There've been a lot of questions asked on the other forums re fundraising, etc. - maybe you could shed some insights and/or suggestions?

PS - Re your bed in the guestroom - Transfer Master makes a 'double bed' version of their beds - worth checking out?

[BJ]

Everyone of us male or female needs this type of night out. Even if it is with or without (husband or wife). Especially if it is a adult child you are caring for.

I know I enjoy my nights out for sorority as well as the nights hubby takes me out for dinner - just like the dating days.

About that bed room switch - if at all possible switch back to one bed ASAP. Even just cuddling sure helps keep the sexual part of the relationship alive. I feel that this is especially important if you are caring for a spouse. It is too easy to slip into a mom/nurse role and lose the physical part of your relationship.

Hubby and I schedule (deliberatly) on nights that we don't to bowel program a 'sex' night. It as certainly helped our relations. I do admit to occasionally escaping to the guest room on the nights he snores like a freight train. But now that allergy season is about over those will be few a far between

[KDK513]

Tag, I don't know how you get any rest. Before Dave came home from the hospital I bought a king size bed so that I could sleep with him and not get wallopped when he rolled over. At that time he was throwing his arms back and forth to get the momentum to turn, or I'd give a push. The purchase of an iron headboard solved that. I absolutely could not sleep, with the light going on throughout the night so he could catheterize. He complained that whenever I moved I'd set off spasms, so this seemed the best solution.

I sure had fun the other night, guess you could tell. Though I could not continue to remain involved in community fundraising, I still managed to serve my term as Pres. of the moms club at my daughters high school.(once people find out you've served in this capacity you are forver marked.) We raised $180,000 that year for the school with a variety of events. Though it was a challenge to get to meetings, etc. I am very glad I was able to see this through. I am afraid I would have really been lost without this challenge. SCI does tend to dominate your life and I do enjoy other things.

Marmalady, I know what you mean about coincidences in our lives. Several months before this happened I was driving home after taking our children to golf camp at the University of Virginia. I had brought several books on tape to listen to on the long ride home. For whatever reason I chose to listen to "Still Me". It was an abridged version but full of so much information that returned to me while talking to the Drs. in the ER.

I will visit the Fundraising Forum. I would very much like to get involved in raising money for SCI. Right now I have too many committments. My son is a sophomore in high school and yes, I am volunteering at his school and helping raise money. We are also moving in 2 weeks to an apartment while we finish building our new hopefully fully accessible house. Once settled my goal is to return to work. I intend to explore fundraising for SCI, but I must also find something that provides an income. Wish me luck. Kathy