Saturday, November 30, 2002

Today is Saturday, November 30, 2002. On Thursday it was Thanksgiving. After getting the turkey in the oven; I went in to get Mom. She was in bed and did not want to move. It took some time. What do you say to your Mother, who has always been the one you saw as so strong that is now crying and says has nothing to live for? What do you say to anyone in that state? Words seemed so meaningless - I just held her. I just held her.

The one good thing about Mom's mental state at this point is that you can steer the conversation very quickly in other directions. It wasn't long before I was helping her get dressed. She doesn't ask, but it's obvious that she wants the help. Now even combing her hair. I see little things that she is not doing anymore - the personal care for herself.

Bill feels this will be the last trip that Mom will take anywhere when she leaves on December 4th for Chicago to see Sharon. Over the last 1 1/2 years since Dad's death, she is failing.

Is it uncaring, unethical to not want to see your Mother slowly dwindle away but rather just have God take her home? I don't want her to go; but this is also so hard.

She just wants one thing - to have Dad meet her in Heaven - that's all she wants.

Friday, November 22, 2002

Mom's appointment with Dr. Haake yesterday went well in the sense that after waiting over an hour we finally got to see him! A long wait this time, they were swamped!

Dr. Haake examined Mom using oral cues and questions as he always does. Mom did about as well as usual, meaning she could answer correctly most things, but was a bit vague on the day of the week, for instance, but knew it was 2002, etc., etc.

Dr. Haake told both Mom and I that since Aricept does so little and only for a short time, and because Mom on Zoloft isn't noticably any different than Mom off Zoloft, he concurs with our feelings to not have Mom on either one. He does stress though that Mom continues to exhibit signs of what's looking like the early phases of dementia, most likely (but not necessarily...just the most likely) Alzheimer's. He said that one of the classic signs of dementia is depression-like behavior. In my opinion, Mom's age and health factors combined with Dad's death have compounded one another for her and it's just a touch situation for her. She sort of understands, but sort of doesn't. Mainly she just takes a day at a time, and doesn't worry the details. The time I spend with her is very precious, and I urge both of you to do whatever you can to do the same. The 7 weeks will be wonderful for both of you Sharon, for instance. Mom is really looking forward to it. She complains at times of being glad to be back at the Manor, but she also realizes that time is short and wants to spend time with all of us...

Time will tell how things will go. Dr. Haake ended the visit by saying take care, come back in 6 months, and wished Mom well....

Friday, November 15, 2002

To which my wonderful sister Betty says, "Sometimes Trish you amaze me. I love you..." Ah, now that's what it's all about, folks. That's why we care, because that's all there is at the end of the day...compassion and everything that comes out of it...

Sometimes, Sharon and Betty, we amaze ourselves! The tenacity we saw modeled by Mom as we grew up has stood all of us in good stead many a time...

My response to Susan:
You've hit the nail on the head, Susan, about Mom - it's grief, not clinical depression. And yes, we can't stop her eating junk. It's just so frustrating, that's all! And I'm thinking you're right about the behavior modification unit...I guess like it or not, we just have to continue being patient, and inventive about solutions, like St. Francis (change what we can, accept what we can't...) Not easy, but there you go. I definitely will keep showing my love to Mom by spending time with her and listening to her, etc. Many people would think, how in the world can you listen to the same thing over and over? How can I NOT, I would reply...I love her, and she needs to talk, and it's just the right thing to do.

This is from Susan, the woman who runs Moorhead Manor, the assisted living facility where Mom lives...
Hello everyone...
Here are just a few general thoughts--

First, your mom has been in this sleeping mode for months and months. She is very sporadic with everything from eating, sleeping, laughing and weeping. Generally she is physically pretty healthy, she doesn't have bed sores or open skin breakdowns, and she is maintaining her weight. When I talk to her she claims that it is because she is grieving. Basically this seems to be chronic grief. Everything reminds her of her husband and sometimes she just doesn't want to face the world.

You guys have done basically everything that could possibly be done to motivate, redirect and make life better. She has been to many doctors. But if she won't follow the orders or isn't motivated to change, no one can make her. You can certainly get dietary orders from a doctor, but if she is unwilling to follow them there is nothing that anyone can do. Currently we don't give her any candy, Dolores claims that she hasn't bought anything from the cart for a very long time. I don't know where she is getting the bags of candy at all. We don't even supply them. The only thing she can get are the desserts and the snacks at snack break.

Here's the glitch. Even if you get doctor's. orders, we cannot stop her from eating whatever she likes. That is her right. For example, we have diabetics that we prepare special snacks for, if they don't want them and continue to eat sugar food, nothing we can do. We can advise that it would be better not too, but we cannot physically stop them) I cannot have the staff patrol these issues because that is not what we do. Also, if in a nursing home, they can prepare the special diets but can't enforce outside eating at all. We prepare and serve well-balanced meals with a variety of food choices, but if they choose to eat only certain items, again nothing we can do. So, doctor's orders on eating will not assist us in anyway.

I know that Trish spoke with Dianna about placement at another facility that focuses on behavior modification. To me, this could make things worse. She is not a behavior problem, she just doesn't want to be here without her husband. When I speak to her she keeps stating that I need to promise that she not be moved. But, this is not my decision, it is yours as a family. Harriet is basically not wanting to participate in life, she is weepy, she is lifeless and one can see on her face that she is sad. I have dealt with Dr. Martindale on many different levels and he is a great guy and a very good doctor. But his forte is not depression or grief. Possibly hospice (I believe that they have a grieving program), or one-on-one therapy, Lakeland mental health or an internal medicine doctor. From my experience general practitioners focus on medication, internist are problem solvers. Again, all of these appointments can be made, but if she continues to refuse to go or get help, there's not much alternative.

I truly care about Harriet and hate to see her in this mode, but possibly what she needs is just time, consideration and listening. It's like dealing with any addiction or mental health issue, one cannot control the outcome unless the person is willing to accept the help. I hope that I am not out of line on any of this, but until your mom reaches out, I don't know that there is much that can be done. We at the Manor can and will continue to try and get her involved and moving. I did speak to one of my staff who's husband died 2 years ago and she said that she has spoken to Harriet and they have had many heart to hearts. Chris did say that the second year for her was worse than the first after losing her husband. They were married for about 15 years, imagine what it must be like after 60! I don't know what this is worth, just my latest thoughts. I hope it helps in some way. Let me know if you have any response. Thanks Susan

Thursday, November 14, 2002

Things have been building up to another head...concerns my sisters and I have for Mom.

Today, I started taking action again...

I hope to talk to you as soon as possible about all these things, but also wanted to reiterate them here for your reference...

1. Mom has appointment with her general physician, Dr. Martindale, on Wednesday, November 27th at 2pm. I'll come at lunch to get her ready and take her that day. The appointment is for discussing with the doctor our concerns about Mom's diet, activity, sleep patterns, etc. I will be trying to get answers that day for all of us, or at least get the ball rolling towards the answers...

2. Between now and then, we need Manor staff to document Mom's 'activities of daily living', i.e., start a log for every day between now and 11/27 that includes a) sleep patterns, i.e., when/if she gets up, when/if she goes to sleep, when/if she naps inbetween; 2) eating patterns, i.e., what/if she eats, and when; c) social interaction, i.e., when/if she participates in any activities and what they are; and d) exercise patterns, i.e., what/if she does physically such as walking the halls, etc.

We realize this puts more work onto Manor staff for this time period; however, in the long run, we hope it will assist the doctor at the time of the appointment so he can better address recommendations, if possible, to help improve these areas for Mom, and in turn make things more clear and easier for Manor staff.

3. Please let Manor staff know we'd like them not to sell Mom candy any more. I have not bought her candy in months, and she has no other way to get it except through their kindness. In Mom's case, however, it's killing her with kindness! If she wants some of her Schwann ice cream, or one of the served desserts that come with your meals there, that's fine, just no more candy.

4. I left a message with Diana Jorgeson, Mom's case manager for the Alternative Program. I will be discussing with her how/if it would be possible to incorporate some personal care for Mom into the time alloted her for that via Manor staff. Our concerns are:

a) Mom's scalp is tender and dry; it's been recommended by her hairdresser that it be massaged 3-4 times per week between salon appointments. I try to do that myself for her when I'm there twice a week, but more often would be better.

b) Mom's skin in general - I've noticed small dry patches on her upper arm lately, and am wondering if some of the body lotion I see that she has wouldn't help her with that if it was ensured that it be applied after her baths (having staff prompt her to apply, and have them observe her application of it...)

d) Mom's dental habits - Mom has horrendeous dental habits in recent months. I'll be asking Diana about how it might be incorporated into the daily personal care time for someone to prompt Mom to brush and observe her doing it for confirmation. This is having direct effects on her gums and mouth tissues being very sore and tender, not to mention very bad breath and making it harder to eat...

e) Footcare - Mom's toenails are in bad shape. I've tried to get her to allow me to trim them, but she won't let me. I've asked my sister Sharon to try to get Mom to agree to visit a podiatrist while she is in Chicago, but that may or may not work out. In the meantime, I'll ask Diana if there's a way to incorporate this as a weekly or ---- personal care item for Manor staff to aid Mom with. Right now, she has something painful with a big toe (ingrown??) that needs addressing, for one thing...

I realize that even if Diana feels that many or all can be addressed by Manor staff through the personal care time allotted, that Manor staff may not have the time available to devote to this. If that is the case, I will try and see if there are alternatives such as someone outside of the Manor staff that could come in and help Mom with some of these items...

I will keep you posted, Susan; in the meantime, I hope to talk to you about these items, and allow you any clarifcation or questions you might have, as well as confirm that you can log Mom's activites for the next two weeks. Thanks MUCH!