Thursday, August 16, 2007

"All I get is to lose my mind!"

Mom seems to have stopped buying dog toys after repeated requests from Brian. Good news, right? This week so far, the FedEx man has graced us with his presence four times, bearing a grooming brush and de-shedding solution, a book, a bra, a fancy water bottle and neoprene case from Switzerland (I'm not aware of any cross-country cycling trips we're planning to take...), and two more books. But no dog toys!

I called Brian at work to make him aware of the latest delivery. It sure is a good thing I can call Brian at work...we have some of our best talks about Mom that way. I can't help but feel awful for putting more on his mind and interrupting his time away from home by bringing up problems. Invariably, though, whenever we try to talk at home Mom gets irritated that we're talking about her. I often feel like I want to protect Brian from dealing with the issues that come up with this disease...I hate seeing the pain in his eyes...but I'm realizing it's not my place. It's got to come from him. Mom kind of snapped the other day saying, "Stop telling me what to do!" I guess I do try to tell her what to do a lot...and a lot of the time it seems necessary. But she's not ready to be parented by her daughter yet. Brian told me today that while Mom's handling of finances is a problem, it's not my burden to bear. I knew that already...but hearing it really helped me actually believe it.

Brian said he's been trying to get Mom to sit down and take a look at all of their financial information for a couple days now, but she has been purposefully avoiding doing so. He said this weekend, they are going to have to have a talk because they really can't afford a lot of frivolous purchases. Hopefully, when Mom sees the big picture of how all her orders add up, she will realize she can't keep shopping like she does. That doesn't seem very likely at this point though. If she's avoiding talking about their financial state, then she knows something's not right. Mom has always handled all the banking, during her and Brian's entire marriage. This is a tough one for Brian to deal with because he's never had to worry about it before. He told me he doesn't want to have to take away Mom's credit cards and access to accounts, but if he really has to then he will. Mom seems to have lost all concept of the value of money.

We went to the neurologist this past Tuesday. Brian and I were hoping it would be a really informative appointment...that we could find out about the rate of progression and maybe what we can expect for a little while. Brian thought maybe the doctor would perform at least some simple in-office memory tests to get a handle on how she's doing. This was the first time Mom has been back to this doctor in six months, since the original diagnosis. The doctor was in and out in ten minutes. I could have choked him. He simply asked how the Aricept seemed to be doing, to which Mom replied a very quick, "Really good!" Mom mentioned that she was a lot more anxious all the time, so he suggested talking to Dr. Mowry about upping her Effexor. He ordered some memory tests to be administered on September 11th, then he was on his merry way. I know I don't really have a right to be mad at him...I suppose he's doing his job as he knows it. I'm more angry with the medical field in general. It seems that doctors throw out a diagnosis like this, and then care absolutely nothing whatsoever about how the family and the individual are dealing with it. He didn't ask a thing about symptoms or coping or adjusting to life in the past six months. I guess we'll find out more after this next round of tests. But I feel like I'm always saying, "we'll find out more after..." Like life is spent in a perpetual waiting for more solid information but it never really comes, so we eke out an attempt to incorporate this new vague thing into our lives. Sigh.

Last week, we went to the hematologist. In addition to Alz, Mom has Antiphospholipid Antibody Syndrome (APS), which is an autoimmune disorder with a high risk of blood clots. The doctor brought up the possibility of having a blood infusion which could knock out some of the antibodies, which could allow Mom to get off some of the medications she is currently taking. The treatment would take six hours and be done four to six times in that many weeks. The same treatment is often used on cancer patients and comes with some high risks, so the doctor is still consulting with his colleagues to see if it's a feasible course of action.

I tell that story in order to set up the following one. We went out to eat after we got done at the neurologist. While we were eating, Mom said that if she gets that treatment, then she could get a makeover from a local salon and they would give her all new makeup. Brian and I asked her why, and she replied that they do that for people undergoing chemo since they have to get rid of all their makeup. We tried to explain to her that it's not chemo, she wouldn't have to get rid of her makeup, and she probably couldn't get a free makeover. She got agitated and complained, "I don't get to ride a hot air balloon; I don't get a makeover; all I get is to lose my mind!" Sad moment. As to the hot air balloon ride, Mom would absolutely love to ride a hot air balloon. She told me one day that we should call the people at Make a Wish Foundation and see if they would give her one. I had to explain that while her disease is chronic and degenerative, it is not terminal. With Alz, it's all the downsides and none of the perks.

As always, I welcome your comments and thank you for stopping by.


Lori1955 said...

I certainly understand you being upset with the medical proffession. I'm not sure if it's that they don't have enough training about AD or if they just lack compassion.
Brian sounds like a gem. Maybe you should tell your mom that she can't keep spending money because you are trying to save up for a balloon ride.

flintysooner said...

I am pretty upset with the entire medical establishment myself. That's a tough issue on spending money. I feel for you guys.

nancy said...

i agree with your assessment of the medical profession as well. too many times they can talk the talk but unless they have walked the walk.....

i wonder if you called the alz. assoc. and asked if they had something similar to the make a wish foundation. maybe they have a local benefactor in your area..... maybe just a wish in itself but.....

Anonymous said...

How much does a hot air balloon ride in your area cost?

Jason said...

My grandma had Alzhiemers, but I didn't know much about it. I was young. She was old already when diagnosed, and sadly I (as a little boy) was more amused (for a time) at the change in behavior and comments. It is a sad thing having one you love end up getting this disease... likely the worst one out there.
I don't think I can say anything to help you feel better, and I sure would like to.
Try to remember that God really is in control... of even this. Trust that this is a true saying.
Many people have experienced horrible things, and again, I know this probably won't help you feel better... but it (horrible things) always makes each person stronger, better prepared for the rest of their lives.
Kelsi, I hope you do well this year at school. Find a great (trustworthy Christian) guy or gal friend who takes you to another world where nothing else matters.
You're about to embark on a new journey... once your higher education is complete, many things will need to be made unimportant... the things that were must no longer be in your mind.
I know that sounds bad, but I believe it.
Take care Kelsi.
I'm thinking of you.
Jason N. Henry

Anonymous said...

Hey Kelsi, I'm sure you're super busy with classes, honors college, and RES life stuff but I just wanted you to know that after reading your last post and sharing in your frustrations with the medical field, that you have helped me to remember exactly what it is that I do. I must admit that sometimes when I am in the medical setting I forget the delicacy of some of the situations that I encounter and I don't take the time to show the love and compassion that I wish that doctor would have shown you and your family. I love reading your posts though because your testimony is a constant challenge to me and you always help me to refocus my heart when it comes to what I do...

Jeff said...


Brian and you need to take control of the finances. I have seen to many families complain about people with dementia spending money. Compulsive buying, it is an endless process until the credit card are max out.

If you have to, setup a single credit card with $200 limit on it so she cannot get you into to much trouble.

Once an organization finds someone like your mother they can keep selling to her until someone steps in and stops it.

I believe all caregivers should keep a journal of what their love one's behaviors are. How are the drugs working, etc.

When you go to the doctor, write down a list of questions you want to ask and give him the list when he/she comes into the room.

Unfortunately, there is nothing anyone can do about a person with dementia except control the behaviors with drugs. Each person progesses differently with dementia. This is life.

My brother is 46 and he has frontotemporal dementia.

Remember when your mother does something that just get's you all upset, remember it is the disease and not your mother.

I enjoyed your site.

Take Care,