Cousins sharing...

From: Del and Lee
To: Betty Thorsvig
Sent: Monday, February 23, 2004 9:17 AM

Yah my Mom is the same way. One time when I take her she is all happy & saying the home isn't too bad & she needs to be there & the next time she tries to convince me she needs to go home as that place is falling apart. The food gets lousier & lousier & is always cold etc. I have bought a pass a couple times & eaten with her & what I had was very good & very hot However I'm sure some meals are better than others Last week when we went to the beauty shop they had screwed up on her morning cereal as she loves the cream of wheat they serve her & has always been very good but whoever cooked it this time did a lousy job as it was all lumpy. So I'm sure it is off & on & there are foods she doesn't like. Meat loaf being one & they have that now & then, with fish as the alternative meal if you don't want meat loaf & she doesn't like fish either.

They have an alternative list on the wall but they don't bother to point it out to the people & with Mom's memory she doesn't remember she can order anything else & if she did remember it she can't see well enough to read it. I think it odd that they don't take into consideration that some people are there because of dementia etc. therefore can't remember things & go ask them each day do you want this today or do you prefer the other meal.

Mom is very weak in the knees & her hip is real bad again She can barely walk anymore. I don't know how much longer I can hold her up to take her out. I told them about it at the last care plan meeting & they are supposed to either put her back in physical therapy or in the restorative program to try strengthen her legs again. Part of it may be from the tranquilizer they give her too as she was so stressed out & causing so much trouble & cussing & swearing & threatening suicide etc. at first that they finally had to put her on a mild tranquilizer. It makes her very sleepy so that may be part of the problem.

Tomorrow she & I go to Las Cruces to a dermatologist to see if he can freeze some of her cancer spots off so as not to have them surgically removed. She will be 92 in July & I hesitate to keep having her put under for surgery all the time. She has had 3 cancer spots removed already surgically & now has another on her upper chest about the size of a quarter. Plus 2 or 3 more little ones that are about to start growing. I hope he can freeze them off so they don't develop.

Thanks for the pictures I sure enjoyed them. Aunt Harriet sure has aged. She looks as old as my Mom. Everyone thinks Mom looks so young & does so well for a 91 yr. old but to me she looks so old & is deteriorating fast. I see more failure everytime I see her. But I can remember the real vibrant, fun loving ,able to take care of any situation, independent, person I use to know so now she is so different it is almost like taking care of a total stranger.

Well have a good day sorry this is so long but guess I felt like talking today.

Love Del

----- Original Message -----
From: Betty Thorsvig
To: Del and Lee
Sent: Sunday, February 22, 2004 9:58 PM

Hi Del,

Things are doing ok. No acting out. She still has good and bad days. We were up for a visit last Wed. evening for a hour - Bill and I - and had a really nice visit. Today I her out for a ham Sunday dinner and she was weepy, talked very little, cried a lot, slept and they cranky.

You never know from time to time.

Betty

When I saw Mom last, on Saturday, we didn’t go out, but I was there for 2.5 hours visiting*. She was in very good spirits. Earlier in the day, not feeling well, but was about to go to supper when I left. No, not bad at all. I’m very encouraged by her demeanor all around. Her biggest concern is that she vacillates between fear and anger about being forgotten by us. She feels she is a burden, but at the same time doesn’t want to have to beg for our attention. Although I haven’t been through what she’s going through, it’s easy to imagine that it would be tough. At this vulnerable time in her life, it’s not surprising she needs more support than ever…

*During my visit, Mom compared caring for her mother with her own situation now. Although I lived through it with her, it was helpful when she reminded me how her and Aunt Pat decided to jointly care for Grandma once Grandma couldn't be on her own. Mom had Grandma spring to fall, and Aunt Pat from fall to spring. It was as fair as they could arrange it.

Towards the end of Grandma's life (1973 or so), she entered a nursing home. Mom said, "I have never forgotten or forgiven Pat for what she did." I blinked, a dim memory of hearing this before in the back of my brain. "Never forgotten or forgiven what, Mom?" "What she did to Grandma."

She went on to explain that Aunt Pat drove up to Hallock one day to have Dr. Larter look at Grandma, left her there, and went home. Dr. Larter called Mom and asked, "What are you going to do about your Mother?" She had to learn from Dr. Larter what had transpired to this point since she had not be called by Aunt Pat. "She was left sitting in her chair in the hallway of the hospital," Mom told me. After learning the circumstances, it was arranged for Grandma to enter the nursing home. Paperwork had to be taken care of by Mom later. As you might imagine, Mom was not amused at having this dumped in her lap, as she called it. She didn't resent her mother, nor helping her, but it was how it happened. As you also might imagine, loving her sister as she did and does, she hasn't stopped loving her. But, Mom is Irish, and she has a looong memory!

Cousin Delphine had these reactions to Mom's transfer this weekend...

Wow, Betty - what a beautiful place. I looked at that web site you listed. Gosh, I'd be perfectly happy there. Aunt Harriet is so lucky. I wish we had something like that here. If it wasn't so far away I would be very tempted to send Mom there. The nursing home here is OK but is a typical nursing home. They do a lot with the residents. Take them on scenic trips once or twice a week take them shopping etc. But Eventide looks more like a regular retirement community rather than a nursing home. I'm jealous as I'd sure love to see Mom in a place like that than where she is. They may have one better in Las Cruces but then that is 75 miles away & I don't relish driving to Las Cruces 2 or 3 times a week. Anyhow I feel you kids are really doing good by your Mom. So beautiful there according to the pictures.

I'm sure the pictures don't even do it justice. Hope all went well & easy today with the transfer of Harriet to Eventide. I even put it in my favorites so I can look at it once in a while.

Friends my parents knew in New Mexico have been keeping touch about Mom, even when Mom cannot keep in touch with them...

From : Betty Thorsvig
Sent : Friday, January 30, 2004 11:18 PM
To : Trish Lewis, Sharon
Subject : From Mom and Dad's friends in T or C
__________________________

I sent this to Don and Nita Donner - good friends of Mom and Dad's tonight and just wanted you both to see theirs and my reply. I also included Delores, Virginia (as her mother is at Eventide too); Florence (a church friend I email that Mom and Dad knew from T/C) and our previous Pastor's wife Billie Sue - as I know they would all want to know. Bets

----- Original Message -----
From: Betty Thorsvig
To: Donner
Sent: Friday, January 30, 2004 11:14 PM
Subject: Re: Harriet's phone number, please

Mom will not have a phone at Eventide. They have a community phone; which I will find more about soon.
She has only fond memories of you both and the love you showed them.
Thank you for your prayers - that is what we are only asking for.
I will keep you updated, I promise.
Sincerely,
Betty

----- Original Message -----
From: Donner
To: Betty Thorsvig
Sent: Friday, January 30, 2004 9:52 PM
Subject: Re: Harriet's phone number, please

Oh, Betty, this is sad and I am so sorry to hear this about your mom. We talk often of her and her wonderful sense of humor. Is there anything I can do. Please, Harriet has called us and when I ask her for her phone number, the last time she gave me an area code for NM. Please would you send me her phone number, so I can call her?

I have a sister who has Alzheimer's and she is only 65 now, when she was diagnosed with it she was only 52. Now at age 65 she is in a wheel chair and like your mom, no control over her bowels. I know the pain of seeing these things happen to your mom. I want you to know that we (the church and us personally) will be praying for her. I want you to know that we care (love) your mom very much. If there is anything we can do please let us know. God bless you and give you peace is our prayers.

Nita and Don Donner

----- Original Message -----
From: Betty Thorsvig
To: Delores; Don/Nita Donner; Florence Reddy; Billie Sue; Virginia
Sent: Friday, January 30, 2004 7:32 PM
Subject: Friends/Family of Harriet Short

Trish and I met with the Manor staff today and Grandma. She just laid there and had little response. She was told she will be admitted to Eventide tomorrow, Sat. at 10 am. Below is what Trish wrote just Thurs and the opening came after she wrote this. If you have further questions, let me know. Please share with any other family that might want to know.
I just wanted you all to know. Thank you, Betty

The light is going out in her eyes, literally.

During the past three weeks or so, there's been a noticeable decline in Mom. It actually began late last year when she began having more difficulty in getting around even with her cane. She was becoming less sure of herself, unsteady, nervous unless I was right there to help her every step of the way. Once, upon return from an afternoon at the hairdressers than grabbing a bite to eat with me, we had just gotten inside the Manor when down she fell. As it happened, it was like time slowed down and I tried to think how to stop it but I couldn't. She fell forward, her face hitting the floor at the corner, one bow of her glasses grinding into her face. After the aides helping her up, we saw a gash on her face, and her eyeglasses were bent badly.

The mother I've known all my life isn't there anymore. My Mom was full of life, opinions, and energy. She had a classic Irish temper, but also knew how to laugh and enjoy life. It makes me sad to already be talking about her in the past tense.

Now, despite a brief time where not only we, but Mom herself thought she was getting past the initial grieving period and coming out the other side, she is encountering another challenge. I'm not sure what it all entails, but it's there, and I don't think it's going away. It's like she's falling apart.

I took Mom to Dr. Haake last week. He's her neurologist. He confirmed that her dementia is progressing, along with a deterioration of her gait. Physical Therapists were brought in to the Manor where she lives to evaluate her. They called me saying her leg strength was actually quite good for her age, but that due to her lack of confidence, a walker was indicated. They will come by a few more times to help her learn how to use it, and observe and advise. After that, she's on her own.

Susan from the Manor called yesterday. Mom has once again been found wandering the halls in nothing but an undershirt, nothing on her bottom half, virtually naked. She's also walked that way into the hallway public restroom and had bouts of diarrhea all over the floor. After a brief interlude where Detrol helped her regain urinary continence, once again she's having accidents but even worse than before; not only when sleeping, but when she's awake. It's like, Susan comments, she's just given up and doesn't care.

The last few times Mom and I went out to eat, she began exhibiting more odd behavior. She was always unconventional in her behavior by some standards, but she usually reserved that for when she was at home. Now, she has begun to do some inappropriate things in public, i.e., taking her dentures out, setting them on the table in full view of anyone to see in restaurants, making loud comments about people near us, etc. I try to redirect her attention, or make a joke and we laugh, and that has worked so far. However, between these troubling examples, and some public incontinence, it's become clear that it will not be as easy – maybe even possible – for Mom to get out much longer. She will miss that very much…

So we are not to the point where we must begin actively seeking skilled care, because it's only a matter of time before the Manor cannot meet her needs. I called Eventide, and they transferred her from the inactive to active list for placement. It's difficult to estimate waiting times, they said, but it could vary from one month to one year.

In the meantime, we wait, we cope, and we grieve. We grieve for the Mother we knew, the Mother we know now, and her absence when it comes.

From Cousin Delphine (Alberta's daughter)...

...you were asking me about a [phone number] so your Mom could call mine at the nursing home. Well she apparently has it as I was talking to Daryl one day about you wanting the nos. of the nursing home so your Mom could call. Daryl said Harriet has called my Mom several times. At least 5 times on his shift & he works noon to 7 PM. And who knows how many times she may have called when he wasn't working. So they are talking it's just that neither one of them remember talking to each other. Christmas before last your Mom called My Mom & they talked for almost 2 hrs. & 3 days later Mom was wondering how Harriet was saying she hadn't heard from her since she went up North. I said Mom you talked to her for almost 2 hrs. just 3 days ago. No memory of it at all.

Then there was that almost $400 phone bill Mom had from your Mom calling collect all the time that you sent mom half the payment for when I wrote what she wanted me to write. And after all that Mom had no memory at all that she had even talked to Harriet. So I don't think we have to worry about them not being in contact with each other. They are it's just that neither one of them remember it. Love Del

No, they don't remember the details, but they do remember each other. As sisters, they've been there for each other all their lives...

"Ain't she the prettiest corpse you ever seen?" asks Arden Peters at his wife's funeral. Before she passed away, Maxine's last words to Arden were, "I love you."

Images (and words) of the Aging of America.

Also, take a look at the wonderful multi-media presentation (slideshow and audio commentary) presented on this same work, here...

The Forgetting is a documentary that will be broadcast on PBS on January 21, 2004 (9pm ET). It's a timely subject with adults living longer but not necessarily living better. We're at a crossroads where quality of life is intersecting with longevity. Science is racing to find solutions to battle diseases such as Alzheimer's, but in the meantime, people are left to cope with the results of our minds not keeping up with our bodies...

So many people are out there, caring for loved ones that can no longer care for themselves. They're called caregivers, a lovely term, but it is describing one of the hardest jobs there are. Nothing new, mind you, since people have been doing it for centuries, of course. I'm bringing it up, however, in the modern sense in our culture. Caregivers are one of those invisible groups that most of us either don't know about, think about, and sometimes even when we do, don't acknowledge. Especially when it comes to acknowledging this challenging and physically/financially/emotionally-draining job by offering support. Kind words are nice, but offering a caregiver a day off is better.

Below is a 'caregiving note' recently published in a newsletter I subscribe to, from a fellow caregiver asking for feedback by other subscribers on a situation facing her. Subscribers are asked to offer their ideas to the person writing in. Under her note is my response to her...

It isn't easy for anyone to be around my husband, including my brother and sisters . MY husband suffered a traumatic brain injury in March of 1999, while skiing. I have chosen to care for him at home.

My husband and I loved to travel before accident. We have sometime shares, so I called my brother and asked if he and his new wife might like to join us next summer at a date that would be convenient for them. My brother called me the next day apologizing he said he's sorry, but since My husband's accident, they aren't comfortable around him, and they wouldn't be able to relax. They would rather not make plans with them. My sister who is a CNA, has not been interested in a trip to "help" out even if I paid her way.

I don't receive any help from my family, but my 5 girls are all supportive to a certain extent. They say it would be embarrassing to help change Daddy. I could understand these feelings in the beginning, but after 4 1/2 years I wish there was an attitude adjustment. The general feeling is that there are skilled care facilities to take care of people like my husband. I know that he wouldn't do well or live long there.

Thanks for reading,

Betty

My answer...

Betty:

It is unfortunate that your daughters are not willing to try to overcome their discomfort to help you. I am a daughter who helped my father with personal care, and while it was strange at the beginning, I felt more compassion than anything because my Dad was probably very embarrassed. His situation was physical only, mentally he was fine, he knew what was going on. My point is, you need help. You needed it 4 1/2 years ago and you definitely need it now! If your daughters or relatives cannot or will not provide you necessary respite, then is respite care through your county, state or local private companies an option for you? If not, you may have to compromise and seriously consider skilled care. If you research available local skilled care facilities, talking and working with the staffs, I have a feeling you can find a good fit for your husband and yourself. Many such facilities not only allow but welcome family involvement. You can continue to participate in the care of your husband, but at the same time continue living life as your husband would surely want. It's NOT selfish to think this way, trust me, Betty. My own mother is now in a wonderful assisted living facility that is more like a cross between assisted living and skilled care. It's private, run by a family, and only has 30 residents. I've gotten to know them all, and while Mom was nervous about it, she has come to greatly appreciate the facility and its staff. I hope this helps you...

I'm reading an amazing book right now titled, "Dancing with Mister D". Based on real-life experience as a physician working in a nursing home, the author writes about what it's like facing death with those at the end of their lives.

Since we are all mortal, we're all of us doomed to be destroyed. This destruction is often preceded by years of torture in all kinds of institutes for the aging, where Time, like the cruel child with the fly, slowly pulls off our wings and legs...

The author, Bert Keizer, works in the Netherlands where euthanasia is legal for those that request it. He discusses, in first person narrative, many such situations in the book. It's illuminating to learn the reasons individuals ask for this, how families react, etc. The subject matter is dealth with with compassion, intelligence, and yes, with humor. It's not a 'feel good' book, but it still leaves me feeling very good about life in a profound way...