Though I am an RN with two Masters Degrees, I have never felt so helpless and without remedy as I have with Mom's frontotemporal dementia, (with underlying psychosis). Helping Mom has meant being the "hated" child, being consistently scorched by her fiery verbal abuse, and trying, trying, always trying to be her advocate and assist her, but to have her thwart much of what is needed or set into place.

It has meant trying to always keep one silent step ahead of her to head off disaster, to be on guard and in service at all times. However, management is never optimal, and it is a constant struggle. Even with my knowledge base, I often feel completely powerless.

Well; I was assisting an elderly woman from my church whose husband was terminally ill. She really needed a place to go to talk and vent. I researched support groups for her and found none in our area.

So . . . after further research, I approached our Pastor and presented a written proposal for a Caregiver Support Group to be sponsored by our church for the community at large. He felt it was a wonderful idea and a definite unmet need.

So; I sallied forth, interviewed and hired an MSW with lots of caregiver support experience to facilitate the group, and the church will pay her fee and provide our meeting room.

The local Senior Center is passing out fliers re the group, and two newspapers are giving us articles and the Chamber of Commerce is also placing an article in their newsletter which goes out to every home in town. The local medical center was so excited about it that they have placed an article in their physician newsletter and are sending the info to the office managers for all MD's on staff. I am amazed at the interest in this.

And what did I find this did? I am extremely excited to have this service available for the caregivers in our community and so hope that it will be a positive force and make a difference in their lives; BUT what I also found, was that even though I can do nothing to really make a huge difference for my mother, this project has made a HUGE difference to me.

My inner self feels a great sense of peace in being able to put this together. Transfer of my feelings from what I cannot do for Mother to others, I know; but somehow what seemed good for others turned out to be really good for me too!

Just wanted to share this, as it appears stepping outside myself and our problem circle may just be the "magic balm" to ease all sorts of invisible bruises. Not so helpless after all.

My love and best wishes for a Happy New Year to everyone!

I am glad it has helped you and I am sure many others also. There are similar groups and I know they have been well acepted too.

Sometimes we only need to ask for a little support and it is there waiting.

Keep us updated on how your group is doing. What a great idea! I think our church should have something like this. It takes someone like you to get it started. And I couldn't attend regularly unless we had a sitter for my parents. I often don't get to church as it is.

Dear Johanna,

What a wonderful idea and what a blessing this is for those who will benefit from the support group. The Lord is already blessing you for your service.

Your post reminds me of this:

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

Keep up the good work.

Happy New Year!

Peace be with you,
Marcie

quote:

Originally posted by sammichj9:
Keep us updated on how your group is doing. What a great idea! I think our church should have something like this. It takes someone like you to get it started. And I couldn't attend regularly unless we had a sitter for my parents. I often don't get to church as it is.

Sammi, I have been missing so much church now, it is the roughest part of being a caregiver without help from her kids. I know if I didn't keep in The Word I would be lost. Love, Sammie

What a wonderful, generous thing to do!

Hello Dear: Many churches record their services and for a nominal fee, ours is $3.00, will send you a CD of the last Sunday's service. Perhaps this way you can "go to church", and participate with others in your own way.

You can also contact church for visitation by clergy or Deacons, etc. They can stop by and see you and bring you news from the congregation. Perhaps Mother would qualify for respite by home health or another entity to give you Sunday off so you can attend service.

I know what you mean by difficulty keeping, "The Word". When there is hardly any quiet time, and when our bodies and minds are so fatigued, it is difficult to gain the concentration we need for other thoughts. This, I am sure, is understood completely by Our Father. Anyway, God bless you, and we are thinking of you. I send you my best wishes.

Thanks Johanna, I watch the service on the internet... www.revival.tv ...I am a hugger and miss the congregation and fellowship. May God bless you and all of our members. Love, Sammie

johanna -- How interesting!! Just this morning I was talking with a staff member at our church to see if we could start a program once a week to care for AZ patients while their caregivers had some time for themselves.
I had done this years ago for mentally retarded children who were not included in school, and it was very successful. Sad to say our fundraising efforts to pay the teachers were not, but then the govt. passed a law saying that all children had to be included in school.

I would like to hear from you about your program. Who takes care of the AZ person while the caregivers are at the meetings? How do you pay the MSW ? -- So many questions are popping into my mind. I look forward to hearing from you .
Take care, Marge

P.S. Did you apply for any grants?
Marge

quote:

Originally posted by Samirae:

Sammi, I have been missing so much church now, it is the roughest part of being a caregiver without help from her kids. I know if I didn't keep in The Word I would be lost. Love, Sammie

I sure know it when I haven't been visiting the fountain. Can't stand myself! I subscribe to Heartlight.com, a daily Bible reading and devo, and it is a shame how I quickly skim through that as though it were a vitamin that just needs to be swallowed quickly and move on.

Joanna,
You hail from California as do I. I am wondering what part of CA you are from. I am in the Inland Empire (Riverside) and my mom and co-caregiver sister live in OC. My private email is skowens95@yahoo.com if you don't feel comfortable yelling out your area. I would love to be involved in something like this if the location was right. Thanks for passing on your info.

Hello Friends: To answer your questions: I live in the greater Long Beach area of So. Ca. Our first support group meeting will be the first Tuesday in February. Our marketing outreach encompasses the month of January. Our church is of moderate size, non-denominational Christian. The support group will be secular in nature for inclusive community service and outreach.

The Caregiver Support Group is not restricted to any one "dedicated" diagnosis. It is for those who provide direct care or coordinate care for a loved one whether that care is for a physical diagnosis or dementia.

Most of the group members will undoubtedly be those who provide care for the physically ailing. My experience has been the majority of diagnoses in a support group are related to cancer and stroke followed by dementias.

Initially, we queried people about the time of day to have the meeting. We decided upon the evening as some caregivers needed a spouse or other person to be home from work so they could leave to attend a meeting. Also, this allows those care coordinators/providers who work to also have the opportunity to attend.

The meeting will be held on a weeknight, bi-monthly. Meetings will probably last 1.5 hours; but we've blocked out a time frame of two hours. To be optimal, a support group should not have any more than about 10 - 15 members so that there is an ability to speak back and forth and share experiences, problems and feelings. Otherwise, if the group is too large, it just becomes a "lecture" from the facilitator and not as effective as an open discussion group.

We have decided we need a minimum of five members to be successful. However, with the amount of publicity we are getting, I am afraid I may have created a very large demand. If so, as my Pastor stated, "Isn't that a marvelous problem to have? If our response is over the top, we will address that and format a second group."

We did not get a grant to assist with this, as this is not a daycare environment, and costs are fairly low. The Pastor, through the Board of Directors, has "granted" us the funds for the initial six months. If the program continues to be successful, they will fund us further on an open-ended basis.

The Social Worker who I hired, has a Master's Degree in medical social work and works primarily with patients/clients in their home settings. She has a good amount of professional experience, and has also had experience in facilitating groups. She is perfect for the job; she is in her early 50's, has a delightful personality, is very warm and loving, and quite professional.

I feel very strongly that a Masters in Social Work or a Licensed Clinical Social Worker are the requirements to have a very competent group leader for this population of group members.

Our Social Worker, knowing this is a community service outreach, is not charging us the going community rate. For two meetings per month, (four hours), as well as her prep time, etc.; she is charging us $160 per month. Very reasonable. At no additional cost, she is willing to present an educational program for the community four times a year on any care subject we wish. What a blessing she is! I just pray she sticks with us.

Also, the undertaking of a daycare setting for Alzheimer and related dementia clients would be a blessing. However, that endeavor is fraught with all sorts of licensing concerns as well as risk management issues. There is a Lutheran Church in Leisure World in Seal Beach, Ca which has a daycare such as this. They limit the number to ten very high functioning individuals. The church itself only provides the space. The people running the group come from a community based organization. It is pricey, and they meet only two half days per week. Daycare is becoming quite a requested item now. A not-for-profit setup would be marvelous.

There used to be a not-for-profit foundation with dementia daycare at Long Beach Community Hospital which was VERY reasonably priced and they did a terrific job. They took not only those who were moderately disabled; they also took those who were far more compromised. They had two separate areas. They did exercises, reality orientation, bathroom training, meds, physical checks, socialization, etc. They were full day, had a van that could pick up and drop off, and even MediCal had funding they allowed for this.

However, like everything else that is good and wonderful along these lines; after five years or so, they folded. Funding became an issue. Sigh.

I have to say, this was extremely easy to put together. It was just initially a bit time consuming is all. Once the concept was formatted in my mind, it was a simple matter to put forth the written proposal to the Pastor and the Board. However, I did my "advance" PR verbally with Pastor first to gain support and clear the way.

Then I had to find a Social Worker who was qualified, willing and affordable. You can contact hospitals, social community networks, etc. Kaiser and SCAN also have large social work departments and you can "fish" there.

The last piece was to write an information "column" and make fliers. I first called the various news agencies and senior centers as well as the local medical center, etc. Once I had my contact person who was a decision maker at each place, I was able to present them with the information, gain their cooperation and followed this up with the written article.

I then confirmed their follow through to ensure we did not get forgotten.

So, any of you wishing to do this, can. I initially thought of making this group originally only for dementias, but then thought better of it. Those dealing with cancer, strokes, etc.; are facing monumental care issues also.

Thank you for your interest, and you might think about starting something like this. If you don't have a church wishing to do this; your local hospital might, as well as home health agencies or senior centers.