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Old 01-17-2010, 01:42 PM   #1
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The letter I want to write to my parent's church

I want to say that I hesitate to ask this question when I read the other posts from those of you who are going through so much more heart wrenching issues than I am. I've thought about emailing my sister to get her opinion, but you (y'all) are the one's with the experience I value the most.

When I took over the driving I was sure I could count on help from the church to line up rides for mom and dad. When that didn't happen I accepted that I would be taking them there, simple solution - not. Last week I took them and told them I would pick them up, and dad insisted that the couple who had given them a ride for two weeks was planning to bring them home. We agreed in the car, on the way to church, that if that couple couldn't bring them home they would call me to come pick them up. When they didn't show up at the expected time I started making numerous trips to look out the window for a car in the driveway. I didn't know whether to stay home and wait for them to arrive or drive to church and look for them. Finally when they were 35 minutes past the time I expected someone from church called and said they were waiting for a ride home. So, this week I when I dropped them off I told them what time I would be there to pick them up. I sat and waited in the car for 30 minutes, I didn't want to go in because I had put a coat on over my pajamas. (the antidepressant obviously hasn't kicked in yet.) Finally I thought that maybe someone had taken them home and went back to the house to check. They weren't there, so I called the church and was told there had been a "congressional meeting" after the service that my parents had gone to, and that there was a luncheon that was starting. I asked them to please ask my parents when I was to pick them up and in a few minutes the person came back and said I could come now, my parents weren't wanting to stay for the luncheon.

I feel really petty for feeling so angry. I KNOW my parents don't have the ablility to understand plans, or follow them. But still I was so MAD - at my parents and mostly at the church. I want to write them and say that even though I was disappointed in their lack of response in helping me line up transportation, I don't really mind getting them there myself, but I would like some help in having them ready to be picked up at a certain time, and I won't be able to drop them off for services if I don't get a phone call from church staff assuring me that someone there is able to get my parents to the right door at the agreed on time, and that someone is willing to notify me of special meetings and changed pick up times.

Please give my some of your honesty. What am I not seeing here? I can't really refuse to take my parents to church, probably I just need to get cleaned up and dressed up so I can go inside when something goes wrong. You think?

JoJo

 
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Old 01-17-2010, 01:50 PM   #2
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Re: The letter I want to write to my parent's church

This must be very frustrating, but I'm not seeing what the church did wrong. It's not like they are a day care service. Did someone break a promise to you? Was there an agreement to provide these services that you want?

My church has a minister, a secretary and a janitor. That's all the staff there is and none of them would be responsible for what you describe.

Last edited by esker; 01-17-2010 at 01:53 PM.

 
Old 01-17-2010, 01:56 PM   #3
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Re: The letter I want to write to my parent's church

JoJo

Don't write the letter. Instead call the church and ask to speak to the paster, minister, whoever is the 'head'. Explain the situation--

1) you are your parents sole caregiver

2) you have your own health issues that you are taking care of but unfortunately medicine you are taking complicates things sometimes.

3) that your parents aren't able to 'not' want to go to church yet and as long as they are able and desire to go, you are willing to get them there BUT

4) You need help in a) making sure they are going in the right direction and be in a room with others b) making sure that there is someone able to drive them home c) willing to call you if they had an emergency so you can make the drive to get them.

Explain to the 'head' that you so want these 'respite' times as they help you deal with the remaining 24/7 caregiving that you are doing and see what he/she says.

its based on that -- that you can make your plans. They don't know what you are expecting of someone else and I'm sure your parents aren't making it clear -- they're hiding a lot from others.

So get the pastor, minister, priest, deacon or anyone.

Caringsister54

 
Old 01-17-2010, 02:06 PM   #4
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Re: The letter I want to write to my parent's church

The same thing happened to me in New York -- I put Mom in a taxi to go to her church and I said I would pick her up. (We didn't have a car.) At the usual time I was outside, and some of the people who knew me said hello, finally the last person came out. No Mom. I asked the pastor ,''where's Mom?" "your mother? She wasn't here at all today."

Yikes. What do I do now. No car, it would take 2 buses to get back home, I didn't have enough money for a cab on me, expecting to take her home on the buses. Nobody hanging around the church volunteered to take me home or to go look for Mom.

Well to shorten this saga, I eventually got into a cab and told him my story and said I only had $2.35 on me -- and he not only took me all the way home, but went the long way around, where I thought I might find Mom wandering around. (New Yorkers are not unfeeling!) At home, I hoped to find Mom back - but no. I called my brother. He said he would drive over, half an hour, and help me look for her.

Around 25 minutes later Mom got home.

"Where were you," I said, hyterical. (not the best way to confront an AD patient.)

"I was at church!"

"No you weren't; I was there and you didn't come out and they said you had not attended."

"Oh. I went to the fruit stand to buy tomatoes."

"Well, where are they?"

"Oh, I wanted to go to church, but when I got there it was too late."

Several different stories, none of them made any sense. My brother arrived and stopped the interrogation (I was such a bad caregiver.)

We decided that from then on either somebody took her there and back, or she stayed home. ONE church member picked her up and brought her home, maybe once a month, and I appreciated the 2 free hours I got. Mom had been a member for 55 years. Once she was in the Nursing Home, a good hour's drive from that neighborhood, 4 of her church friends came to visit her together, one time in the 2.5 years she was there. The pastor never came. He did not conduct her funeral, but sent a substitute who did not know her.

My family was and still is pretty disgusted with that church. My sister was married there, my brother confirmed, Mom an active member of the Ladies Aid, cooking and baking for decades, attending church and all other actvities up until the age of 95, then she gets sick and nobody knows her? But it isn't only churches. She was also a member of a Senior Center for over 25 years, teaching sit down exercises for seniors, serving on committees and being a good, helpful member. When she got ''a little strange" (well, one day she put on the wrong coat and insisted it was hers) they all dropped her like a hot potato. I think our society has no room for anyone who does not quite fit in...

Love,
Martha

 
Old 01-17-2010, 02:13 PM   #5
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Re: The letter I want to write to my parent's church

Esker, I see why you don't understand my anger at the church. I'm not sure I understand it myself. Mostly it's about the fact that I called and left a couple of messages to talk to someone there about help getting my parents a ride and no one ever returned my calls. And when I called today the person has this really irritating cheerful answer - "Oh well, we had a congression meeting after service!!" I want to feel like I'm getting some little, eenie weenie bit of help with them on this. But I've never actually had the chance to talk to anyone about it.

CaringSister, you're right, I need to explain the situation to someone there. It's more than likely that they aren't aware I'm dealing with dementia. I guess I'll keep calling and leave messages that I need to talk to the pastor, and hopefully he will call me back so that I can explain it all to him.

 
Old 01-17-2010, 02:24 PM   #6
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Re: The letter I want to write to my parent's church

Martha, thanks for sharing that story. It closely describes the way I'm feeling about this church. Mom and Dad have been members there since 1963, Dad was the volunteer bookkeeper for years, Mom cooked a weekly diner (planning, shopping, cooking, serving) that the church held on Weds. night for years, and planted and maintained the flower beds, still does as much as she can with me helping for the last two years, they both sang in the choir, where deacons...on and on and on and on. Two of my children where married in that church. I realize that I'm an outsider and that they may not feel any need to help me out, but I was thinking they would want to help my parents keep attending every Sunday as long as they're able to. Maybe I just need to have a talk with the pastor, or the secretary, like CaringSister said. But somehow I have the feeling my experience is going to be a carbon copy of your experience.

JoJo

 
Old 01-17-2010, 02:29 PM   #7
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Re: The letter I want to write to my parent's church

and JoJo

Again one thing that we have to keep repeating to ourselves and others.

When you don't have expectations on others, you won't be disappointed.

When and if you do have 'the talk' don't phrase it like you are waiting for someone to volunteer. Ask if they can have a meeting or an annoucement during services that they need someone to do the drive home BUT then you must have responsibility to meet them at the curb, do not make the person doing you a favor, wait for anything. Offer to pay for their gas.

if no one steps forward then you have a decision to make -- maybe going to church will be good for you and you'd need to get yourself up and dressed and go with your parents. if the morning doesn't work for you what about going to a night service?

One other thing that Ester said that made some sense. You can't expect them to be babysitters for your parents. if your parents want to get up and walk around, there's no one to stop them. My mother went to the same senior center everyday for 4 years. When she had a problem with getting pinced by a 'plastic' thread, she did the only thing she knew to do, she pulled her pants down to show someone --

Not her undies, just her pants -- my sister was called to say 'we can't have your mother here anymore' and they were right -- it wasn't for them to watch my Mom.

CaringSister54

 
Old 01-17-2010, 02:31 PM   #8
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Re: The letter I want to write to my parent's church

JOjo. I understand where you are coming from. I think we all have expectation from our churches (to be the hands and feet of Jesus to those of us in difficlty). Unfortunately, I think most people in churches really don't understand the frustrations and stress of dementia caregiving, so they don't really understand how much supervision and direction Mom and Dad need.

I had lots of good-intentioned promises made when my wife was first diagnosed. And as the disease progressed, there was less and less contact from any of them. And now that I"m "free" again, I have no relationship with anyone there, and am honestly having a hard time wanting to be caught up in the whole religion thing again.

I want real relationships, not superficial ones.

Anyway. Maybe if you contact whoever at your church and explain to them that even though your parents look and seem alright to the casual observer, that there are reasoning and plan-making skills that are gone.

Get your anger out here... It's ok with our little family... Then have rational discussions with the church folk. Explain to them what you are dealing with now, and how it will progress. You may even invite them to do some reading on healthboards. Maybe hearing it from some other people will help them see the problem.

later. K

 
Old 01-17-2010, 02:31 PM   #9
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Re: The letter I want to write to my parent's church

The people at my church can't even put out the trash on the right day.

 
Old 01-17-2010, 02:42 PM   #10
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Re: The letter I want to write to my parent's church

I have found a great church here. BUT, I know the time may come when I am old and feeble and disoriented, and those my age have passed on. Mom died at 99 and her closest friends preceded her. The younger folks may very well shy away from bothering with the demented old lady .. that's why I have directed my daugher to get me into a nice nursing home when the time comes!

One more complaint against organized religion before I stop, because I actually love my church : at the NH where Mom was, they had services every Saturday and Sunday with various pastors of different churches volunteering to come in. My brother went to one with Mom. Now here sit 30 or 40 VERY old, feeble and confused, fragile people obviously on the way out. They need to be cheered up. If nothing else, they need to hear God loves you, you are His child. No. This pastor gave them an old fashioned "if you do not repent today you are going to H**l.

My brother was appalled. He never took her to another one of the services which was a shame, since I am sure many of the volunteer ministers would have given an entirely different sermon. My brother was the only one who lived near the NH and saw her regularly, I was there 3 or 4 x a year for a week....

But don't blame the Boss for the wrong actions of his employees!

Love,

Martha

Last edited by Martha H; 01-17-2010 at 02:44 PM.

 
Old 01-17-2010, 03:03 PM   #11
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Re: The letter I want to write to my parent's church

I really don't blame the Boss!! And it would probably be good for me to go to church with them, but I'll have to really have a talk with myself in order to be able to do that. I married into a "repent or you're going to h**l" religion, and finally rebelled. Now I prefer the New Age approach to spirituality, or my long time attraction to Catholicism, based on my childhood friends who had a strong attachment to their Catholic church, while my mom was an atheist and my dad never, ever, discussed religion. Mom has always openly declared herself an atheist and their church has refused to believe her. What she loved was the cooking and gardening and singing in choir and sense of community. Now about all she has left is the sense of community and a little gardening. She certainly can't hear the sermons, which I'm sure doesn't bother her at all.

I just want to say that I in no way consider the church to be a day care center. My only motive in trying to get them there is that I want their lives to be as normal as possible for as long as possible. I even plan to pick them up, that still gives me 90 min. of respite. I just want someone, any church member who has been their friend there for years and years, to get them to the door I'm waiting at, and within 5-15 mins. from the time I got there.

Love, JoJo

 
Old 01-17-2010, 04:00 PM   #12
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Re: The letter I want to write to my parent's church

JOjo. What I think I'm hearing you say is that you just want to know what to expect from any outside help. That way you can make plans accordingly.

It would be a shame for your parents to have to miss church because you are not able to get them there and back every time. If the church truly believes in serving others, maybe a couple of people will step up once they understand the issues and needs.

If no one steps up, at least you'll know what you need to do to make it happen, and not count on being able to depend upon anyone but yourself.

I know. All you want are the accurate expectations, and you can work it from there.

You are stronger than you ever could have known, and you'll get thru it with or without anyone else's help. Hang in there. K

 
Old 01-17-2010, 05:16 PM   #13
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Re: The letter I want to write to my parent's church

Let me dip my toe into this conversation only to repeat a quote from a friend who ran into the same type of problem. In his anger, he said, "well, I guess some people are too busy being religious to be Christian.

Love, Meg

 
Old 01-17-2010, 05:41 PM   #14
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Re: The letter I want to write to my parent's church

Ken, I'm glad you brought up expectations again because I forgot to touch on that in my last reply. I think you hit on a big part of this when you said I had expecations of the church members that weren't being met. And I never actually said to any of then what my expectations were. But that doesn't stop me from being mad at them when they don't meet my expectations. The good news is I'm willing and able to change my expectations, and hopefully let go of the anger.

You are absolutely right, I just feel the need to KNOW what is what, what to expect every Sunday. I can take them every time, I can pick them up every time, I can accept that I can't count on them to remember what the plan is, or the time they're going to be picked up. But please, please, someone at that church be willing to help get them to the pickup point at close to the right time.

And Meg, at least I haven't reached the point of frustration that your friend did. But if I can't get any cooperation I can see myself getting there. I truly hope that doesn't happen.

Love, JoJo

 
Old 01-17-2010, 08:18 PM   #15
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Re: The letter I want to write to my parent's church

JoJo, this reminded me of when I learned CPR years ago. We were told never to say to bystanders, "call 911." Instead, point to one specific person and say, "YOU, call 911." Otherwise, it may not get done. Everyone thinks someone else will do it.

If you want someone to bring your parents to the door for you, you need to have someone in particular who will be responsible for it. It can be several people on a rotating basis, but it can't be just an anonymous "someone" who will hopefully happen to notice them and remember they need help. I suggest going in and talking to the secretary or pastor and asking if a few people could be lined up to help with that.

In our church, things like this are done all the time, but specific people are always lined up ahead of time. That way, everyone knows who is responsible and that the job really will get done.

I hope you can work it out. That little respite time makes a huge difference!

Blessings,
Emily

 
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