A Father's Experience

Final Communication with Lisa's college

Beth,

Lisa is all moved out of Spindler. Traci, from housing, is going to send me a form to terminate the lease. She passed on Denise's message that she was going to be charged up to April 2nd. The pro-rated amount will be enclosed in with the form. Is there anything else we need to do? It will be a long road back to school for Lisa. The medicine they have her on now is not working well and she is refusing to take anything else. She does not like to admit to having any limitations. Without that, she will never know how to avoid problems. She treats her education as if it were a race, and, with her disability, she's got to travel on a different track. I hope it happens for her. It just won't be soon. Thanks, again, for all your help!

Fred

Emails to the Director of Disability Services

After having one successful semester at engineering school, Lisa has decided to sabatoge herself. She did not like the side effect of Clozaril and Depocote (sp) even though she managed to get strait A's in highly technichal classes. She is desparate to try other meds without success. As a result, she has withdrawn from college. She over estimates her ability to return, even though she is highly emotional, has difficulty reading and concentrating, and she imagines intimate relationships with boys that don't exist. The following is my communication with the school:

March 13, 2007

Beth,

I am contacting you in regards to Lisa Summerfelt. She is currently in the Psych. Ward at Borgess Hospital (Since last Thursday). She has had a breakdown since not taking her meds for who knows how long. She is currently in a catatonic state is unable at this time to function in school or at the job she has held in the engineering building. We do not know how to proceed from here, and we were wondering if you could help us out. We don't know if she should take an incomplete in her classes or just drop out this semester. She recently got a refund from WMU for $3,382.24. We don't know for what or if it needs to be applied toward anything. We got a message on our answering machine yesterday from the school's admissions office. They wanted to know if there was anything they could do about Lisa's situation. The woman sounded very sympathetic, so I don't know if anyone had alerted them of what was happening. Could you please check into this and advise me where to go from here? Thank you!

Fred Summerfelt
Lisa's father and legal guardian

Fred

I just learned that the phone message you received was from the Dean of Student's office. I spoke to them this morning and told them my office would be Lisa's contact point so she wouldn't have to deal with two offices. I spoke to Peter Parker, her advisor and all of Lisa's profs have contacted me with good wishes for her recovery and willingness to work with her to make up work though some of that will depend on how long she is out. When Lisa is ready, she can discuss how she will come back to school. I can help negotiate with profs and other university offices. She has several options. She can withdraw from any or all of her classes and seek cancellation of tuition charges. She can seek an incomplete in classes and work with her profs on deadlines. My concerns about incompletes are at times students think they can work on several incompletes and still register for the next semester classes. They may be more optimistic about how much they can do, become overwhelmed and further behind and discouraged. When Lisa is ready to return, I ask that she meet with me to make sure her supports are in place. I know Lisa is very bright. I want to make sure she is ready to work with her treatment plan.

I learned that the $3382.24 refund was because she had applied for loans. When all of her tuition charges and fees were covered, she was refunded. I don't know if her housing charges are automatically deducted from her student account.

Let me know if there is anything you need. Best wishes.

Beth

>>> Fred Summerfelt 3/10/2007 4:47 PM >>>

March 19, 2007

Hi Fred

How is Lisa doing? Is there anything I can do?

Thanks

March 26, 2007

Hi Fred

I just learned that Lisa was removed from the residence hall again.
Is she back in the hospital? I think you've been through things
like this before with Lisa. I'm concerned. Is there anything I can
do?

Beth denHartigh

>>> Fred Summerfelt 3/26/2007 5:31 PM >>>

Beth,

Thanks for asking. I am so thankful that people like you are
around. How would disabled people accomplish anything without help?
Lisa was put on a very low dosage of her new meds. Evidently it
was not enough to keep her out of the hospital. She will have to be
in for another 10 days when the higher dosage of medication kicks
in. At this point, I don't know what she should do about school.
Can she stay in the dorm to make up incompletes? If not, I don't
know how she will catch up by the end of April. What would you
recommend? I know she'd still like to return in the Fall. She'd
like to become a permanent resident of Kalamazoo. I'll be waiting
for your reply. Thanks, again!

Fred

March 27,2007

Fred

Thanks for getting back. It's helpful to me that you are a point
person. I'm trying to run interference between Lisa and other
university entities so she gets a fair chance. A student can
usually live in Spindler during the summer without being enrolled
but must be enrolled in at least one class during fall and spring
semesters. She still has options. Some profs will probably work
with her on incompletes but if the courses activity requires
classroom participation (ex. labs) she may need to drop. I haven't
had further contact with her profs but I think I'll contact Peter
Parker at least. If Lisa wants me to contact other profs, I'm
willing.

My concern at this point is that Lisa is very ready before she
moves back to the Spindler. I understand when she left the first
time, her behavior was scary to other residents. I don't want Lisa
to wear out her welcome. The hall staff has to think about the
total living environment. Sorry. That seems so callous, but you
need to know.

Beth

March 29, 2007

Beth

>>> Fred Summerfelt 3/28/2007 8:19 PM >>>

Beth,

We just got done visiting Lisa. She was quite spacey. The nurses told us that she was catatonic first thing this morning. If we don't see any improvement by Monday, we may just go ahead and withdraw from classes. Please don't do anything until you hear from us. I am hanging on to my last bit of optimism. She has become a lab rat for every type of med that the doctor thinks is appropriate. She may have to go back on her old meds that got her thinking better and that enabled her to function. As far as I know, she has no means of financing her education next year, but we won't cross that bridge until we come to it. I'll be in touch.

Fred

Hi Fred

Happy Birthday Lisa! Please send her my good wishes. I spoke to her yesterday and she asked to be withdrawn from classes, but I'm waiting for a call from Peter Parker to see if she can salvage anything from this semester. There's no real rush to withdraw. I also called Residence Life to see if they would allow you some flexibility about moving her out of Spindler so you could move her out sometime next week and not have to pay April rent.

Doctors seem to have different views about meds and combinations of meds. I'm sure it's frustrating to watch Lisa be subjected to that. Other students have expressed to me their frustration wtih or distrust of their doctors. No wonder!

Let me know what I can do. Best wishes to you. It must be tough.

Beth DenHartigh wrote:

March 28, 2007

>>> Fred Summerfelt 3/28/2007 6:08 AM >>>

Part of my thinking about convincing Lisa to withdraw from her classes at this time (besides thinking that this is right thing to do) is that I have vacation next week and could start moving her without taking time off from work. If I pay for the April rent, we'd have until the end of the month to do this with less stress. Then she could sign up for fall classes, assuming that she will be in much better shape by then.

Fred

Fred

Lisa can look to see what courses are offered this summer and register for them. She may be able to sit in on a couple of classes as a condition of incomplete and not have to pay the tuition a second time. Any classes she wants to withdraw from, we can appeal for tuition remission.

Are you considering moving Lisa out of Spindler? If so, I can intercede so you won't be charged for April rent.

Beth

March 30,2007

From: Fred Summerfelt [mailto:fmsummer@ameritech.net]
Sent: Thursday, March 29, 2007 5:38 PM
To: Drooger, Kristi
Subject: Transferring Lisa back to St. Joseph

Could you please start the paper work to transfer Lisa back to St. Joseph ? She is refusing to take her medication again, and who knows how long this will take. I am going to start moving her things next week. So if you need me to sign anything while I am there, please let me know. Let me also know what I need to do to make this happen. Thanks for all your work. I am not sure Lisa will be returning in the fall, since she does not have any financing arranged. We will probably just start paying her loans when they come due until she can arrange to get into school again. Thanks again!

Fred

I sure will Fred. I had called Lakeland yesterday to check on her and they informed me that she was still having trouble. I will make the arrangements and let you know what I need from you.

Kristi

March 30, 2007

>>> Fred Summerfelt 3/29/2007 5:30 PM >>>

We will go with the withdrawal of classes and I will start moving her out next week. Right now, she is refusing to take her medication, and who knows when that attitude will turn around. I will be glad to pay rent pro-rated until we get her out. Getting help to carry the big stuff is getting more difficult at my age. Thanks for your help!

Fred

Fred

Just to reinforce your decision, I talked to Pete Parker yesterday, Lisa's advisor, and he recommended withdrawing because she has missed a lot. In one of her Engineering classes, she needed to work on a project with a partner and make a presentation. This kind of work is hard to make up in summer when professors and other students are not around. The Math course too is tough without the benefit of instruction. I'll check on where Lisa is in relation to financial aid.

So sorry. I know Lisa's health is an on-going issue for your family. My thoughts are with you.

Beth

April 3, 2007

Beth

>>> Fred Summerfelt 4/2/2007 7:25 PM >>>

Now that Lisa is withdrawn from classes, what do we need to do, or what should we expect to hear from WMU? Also, what have you heard about Lisa's April rent? Except for a final cleaning, she is completely moved out. We still need to wrap up loose ends (closing her bank account and find out where she dropped off her taxes, etc.). I'm getting too old for this! Have a nice "Easter" holiday!

Fred

Fred

The residence hall people see the turning in of keys as the last thing concerning the residence hall. It will probably take awhile before the refund comes through for Lisa's classes. I think that's it. I don't know if she wants to register for fall classes...

Happy Easter to you too!

Beth

>>> Fred Summerfelt 4/3/2007 9:50 AM >>>

Beth,

Two things concern me about Lisa's return in the fall: 1. Whether or not she will be stable enough on this change of medication. I would like to see if she could just take a fun class at the community college. She says she's sharp. But, what I see is that she seems very slow and, she has difficulty with reading. 2. I am not quite sure of how she has arranged financing. I would like to be more encouraging and supportive, but we are always the ones cleaning up when she crashes (U of M, Ferris, not to mention jobs, etc.). I'd like to take a wait and see attitude. Lisa needs to start taking care of business herself when she returns to the hospital. She doesn't seem to realize how much it entails when this happens. It is one thing to be able to finish an education when all the supports have been put into place by those who care for you, but it is another to seek independently what ever support you need to succeed in what it is that a person wants to do. It has been 10 years of this similar pattern and things have to start changing. I feel like I've reached my limit to what I can do. I still want to be there for her in case of an emergency, but I cannot solve all her problems, no matter how hard I try. I am sorry if I sound sort of bitter, but I feel I've been paying more attention to my daughter's needs rather than my own, and things are getting out of balance.

Sincere regards,
Fred

Fred

I can only imagine what you have been through! I don't think you're bitter at all and I agree that you need to see some stability in Lisa before throwing her into another situation for several reasons. You have a finite amount of energy. You, too get your hopes up that she can be as successful and if she continues to burn bridges (unintentionally, of course) she may use up her opportunities.

Let me know if you need anything.

Take care!!

Beth

Lisa has gone through the same pattern for the past 10 years. How can I emotionally separate myself from this so I don't end up in the hopital myself?

Progress Update on My Daughter

I am so proud of my daughter! Since I have last written, she was hooked up with a local ACT team which checked on her and gave her meds three times per week. With this kind of support she was able to finish off her senior year in college from all the credits she had received throughout years of plugging away. From there, she applied to WMU to continue to obtain an engineering degree. That was her goal when she started out at U of M almost 10 years ago. She keeps two places of living. One place in her hometown supported by disability money and another on campus supported by government financial aid that she will have to pay back. At the onset of school in the fall, she tried to cut down on her meds. This would have been disastrous. She'd end up in the hospital and would have to drop out of school. In the campus town she lives in, they only check on her once a week. I was worried since her main problem is getting off the meds and ending up in the hospital. I am still her legal guardian to help her out in a pinch and to be able to communicate with anyone within her support system. When I gave her case worker a heads-up, she made adjustments on Lisa's meds and my daughter was able to get on track again. Starting out this 2nd semester, her school discovered an old letter that stated that Lisa was too sick to attend college. As a result, they wanted to discontinue her financial aid. With the help of her caseworker, she got everything straightened out. She is getting straight A's, applying for scholarship, and holding down a part time job. I don't know where this trip is going to take us, but we don't try to cross those bridges until we come to them. Once she gets a degree, I am hoping she can hold down a job without too much trouble. Oh well, one day at a time.

Proud Moment

I sent the following email to all my family and friends:

For some, there is nothing worse than a parent who boasts about their child as if no other existed. If you are one of those people, then delete this email right now, because I can hardly contain my pride for Lisa today. I took work off to take care of Lisa’s mental health issues, while she took care of her academic issues at Western Michigan University. She had been accepted into their engineering department. We went to the financial aid and housing office to make sure everything was in order for her to attend school in the fall. I have to admit, I was not looking forward to this day. As a worrisome parent, I was afraid that history would repeat itself and Lisa might be disappointed again as all her well intended efforts might fail again. Of course, I am proud of all her efforts she has made as she has persisted to forge ahead. Late morning, we went to the Office of Disability Services. I immediately explained my position on guardianship. I would not use it unless I absolutely had to (incase of emergency or when they felt my signature should accompany Lisa’s). The director shifted her eyes back and forth to see how Lisa was responding to the fact that her father was speaking for his 27 year old daughter. She knew right away that we must have had a special relationship and trust, and that I would never intentionally infringe on her rights. She soon realized that, in fact, I would be one of her strongest advocates to help her achieve whatever her potential might be. That was one of the only times I spoke today or attended any of her appointments. Lisa was a take charge person today. She took care of her business with an assertiveness and maturity that I had never seen in her before. My “baby” is growing up! You would never have seen a more proud father than the one that existed today! I am sure we all have similar stories to share about our children. Thanks for letting me share mine.

Fred

Going Away to School Once Again

I have been so proud of Lisa lately. She has been getting straight A's in college and she soon will get a bachelors degree in Liberal Arts. She plans to eventually pick up where she has left off and get a degree in chemical engineering. Part of her success of staying on her meds has been with the help of the ACT team which consists of mental health professionals that come in and monitor her meds. She wants to stop the service, but I have reminded her that in the past she has stopped her meds when she has gotten stressed out or tired. She agreed, for this reason, it would be a good idea to continue this service until she has gotten a degree (and perhaps a job in her chosen field). If she continues to be successful, I'd like to phase out being her guardian. 90% of the time, I do not use my guardianship, which is probably illegal. I intended only to use it to get quick help for her if she goes into the hospital. It makes the difference between 4 plus hours to get admitted and receiving immediate help. Lisa hasn't ventured out on this type of mission since she first had problems trying to get through college in the 90's. It is hard for me not to be a parent and be worried about this. And yet, I cannot not let her go. It is Lisa's and my goal to see her as a self-sufficient adult.

Lisa back in the hospital

I thought when I started this blog, I'd be writing in it constantly and that it would be therapeutic. Once I started teaching again in the fall, the last thing I wanted to think about was a blog. In fact, I needed to find balance in my life besides being a full time life saver. Having a daughter that is schizo-effective is like a roller coaster. We build up high hopes because everything seems to be going so well and then "we" are back in the hospital. Lisa has been trying to get a degree in radiology. But, how can she handle a job with any kind of liability risks with her illness. She did have one job on the Whirlpool help line giving advice about small appliances. It paid so well, she almost lost her disability payments. But, then she was fired a few months before she ended up in the hospital again and shortly after New Year's Day. It took her weeks before she came out of her catatonic state.

Lisa has been trying to transition from Clozipine to Ambilify for almost a year (She also takes Depikote). For anyone who reads this, please forgive any spelling errors. I don't want to block my flow of thought by getting caught up in every little thing. Anyway, as this has been occuring, she has had increased social phobia similar to what she had when she first became ill while attending college. Lisa ended up in the hospital again today. It will be a short visit, since she's coming around so quickly. It never stops breaking my heart whenever this happens. Again, we start on page one. Is the Ambilify not working? Was she not taking her meds? What will Lisa's new direction be?

Lisa's sick/meds

Lisa was going to visit her friend in Detroit this weekend. After she had bought her ticket, she felt sick. It is difficult to tell if she has the flu or if this is some kind of side effect from her meds. Sometimes I think this is how she reacts when she hasn't been eating well with the combination of taking her meds. I get concerned when she gets sick, because she often uses this excuse to stop taking her meds and then she ends up in the Behavior Med department of the hospital.

She wants me to attend her next doctor appointment with her psychiatrist to see if I can convince him to put her on a different medication that does not have the side effect of weight gain. The doctor hesitates to do this, because the only medication that has helped her (after trying almost all that were on the market) was Clozipine. It has worked for her so well, that the doctor doesn't want to make a change. She has been on this for 3 years now with great success. The doctor told her there are other good meds out there that might be as good, but he doesn't want to make a change unless Lisa starts having problems. I feel that if being over weight gives her low self esteem, then this is a problem. I want to talk to him about trying something new. If she starts having problems, then well go back to Clozipine. I hope we can convince him before we consider other alternatives. She generally has such a good doctor/patient relationship with him. We'll see what happens.

Starting a blog

This is my first experience with a blog. I am somewhat nerveous about whether I can keep up with the responsibility of making regular entries. I will probably make short entries except for times when I feel prolific in expressing myself. I wish they had a spell check on this entry site for my blog. I guess I'll have to make my concern for grammer and spelling errors a low priority, otherwise I may be discouraged from making regular entries. This should be a user friendly experince. Perhaps I can put the entries on my Word program and then cut and paste. At some time I'd like to go into how my daughter first started having problems and how it devistated us. Over a period of time, we learned how to get help. For now, I have to get ready for work. I am a special education teacher in southwest Michigan and Thank God its Friday!