Not Going To Be Easy

So during dinner, Lizzie actually had a conversation with me about the group home, although I didn't call it HER group home. I asked her why she didn't want to have dinner there, and her response was that she wanted to have dinner with ME. I asked her if she would like to spend the night there, and she said an emphatic NO because she wants to sleep in her own bed. I told her they have a brand new bed for her, and she said "that's not the same". I told her she could take her bed there, and she said "I just don't feel like it."

Sad Eyes

Yesterday Lizzie spent the entire afternoon at her new group home (as a trial/introduction), and the reports that came back to me were positive. I was told that she sang and danced to MTV with the other residents; talked and laughed with her assigned staff; and enjoyed the Port-of-Subs outing although she preferred to take her lunch home and eat it there.

When she returned home, her first words were "Well, are we going out to dinner?" and the nightly discourse about that topic began. I simply said, "No. It's time for your bath." We went back and forth on that a few minutes until she conceded with "Well, what are you waiting for: Christmas? Let's take a bath!"

This morning her usual SLA trainer came and took her out for only an hour because she was scheduled to return to the group home for the day. When she returned from her Walmart excursion, once again, "Are we going out for dinner?" Lizzie has no concept of time whatsoever!

Her new provider was here ... I'll call him Dino. She was very kind in her greeting, but did not want to leave the house without her "twin sister". I walked her out the door amidst her protest, and Dino encouraged me with "I'll be OK. As I watched them saunter down the walk, I watched her look up to him, they talked, and she walked to his truck. As they pulled away from the curb, her little face was looking at the house and she looked so sad it broke my heart.

I remembered the day back in 1960 when our family was staying at our grandparents' home for a family wedding. I was supposed to sleep in a bedroom and Lizzie was assigned the sofa. She crept into my room and said she wanted to sleep with me and of course that was OK with me. Our father heard us, and then our grandmother arose and INSISTED she sleep in the living room. Out of fear for a scene of domestic violence, I helped Lizzie get settled. I will NEVER forget the sadness in her eyes as we said good-night and the ache in my heart as I did so. I will go to my grave regretting that I didn't fight harder for that night. Her eyes in the truck reminded me of that night.

Around 4:00 this afternoon, Dino phoned and told me Lizzie agreed to stay for dinner at the group home. I felt so relieved ... maybe this will work! Alas, at 5:30 my phone rings only to learn that she wants to come home and have dinner with her family (ME!). OK, so home she comes, and again we begin the let's-go-out-for-dinner routine. Right now as I am writing, she is mad because I made her favorite spaghetti sauce for dinner and we are eating in.

This is going to be a roller coaster of emotions. Oh wait ... her she comes into the kitchen now. Lizzie is happy again.

Now I Remember And MORE

As I was cleaning the bathroom floor with Clorox early this morning, I remembered why I began the search for a group home. It IS the right decision for both of us.

AD is a disease which kills brain cells and is unpredictable, inconsistent, and degenerative in nature (MY observations at best).

Today I received an email from Lizzie's State social worker/case manager telling me her supportive living arrangements are being terminated. It read: "I received a letter from Trinity stating that they are no longer able to provide services to Lizzy as she has deteriorated beyond a point where they can justify training her."

Now I ask, who makes this type of decision? Supportive Living Arrangements (SLA) is the term for one of the state funded assistance programs for disabled persons. It allows the person to receive a benefit which provides daily living type training skills and social involvement within the community while living at home with family members. My sister has been granted this benefit for the past 4 years which provides services for 39 hours/month. She looks forward with anticipation to her weekend outings with her provider/trainer, and now somebody says she can't do that anymore because her cognitive skills are fading? OMGoodness! She can still process information in the moment to some degree sometimes, but does that mean we stop trying to allow her the dignity of trying new things for herself with assistance forever? Where is the respect for the aging? Where is the tolerance for those less able as days go by?

Oh that's right ... wait a second ... how could I not get it ... she's declining ... therefore ... not entitled any more.

I won't begin to discuss the population I see at the welfare office every year when I go down there to turn in her paperwork.

I'm angry, bitter, disappointed, frustrated, and just down-right hostile right about now!

Doubting The Decision

I am struggling with my decision to place Lizzie in a group home even though I understand this is not carved in stone. If it doesn't work out, I can bring her back home. My greatest concern is possible heartbreak on her part. Have you ever lost someone you loved through a breakup or divorce and hurt so much simply because you missed the person? That's the kind of heartbreak I am worried about. What will I do if she cries because she misses me as she did when I moved to Reno many years ago?

I found this online tonight. I was searching for helpful articles to reassure myself. It's from https://members.kaiserpermanente.org/kpweb/healthency.do?hwid=aa58684


Your options:

Care for your relative at home. Some caregivers also may want to think about part-time care at home with a health aide or a nurse or in an adult day care.

Move your relative into a nursing home or other long-term care.

Key points to remember:

People with Alzheimer's or other dementia need a safe, structured environment. You may be able to provide this at home. In other cases, long-term care in a center is a better choice.

People with dementia usually need more and more care as time goes by. At some point, your relative will most likely have to be moved to a long-term care center.

A care center may offer your loved one some people to talk to, as well as activities and outings. These social contacts may keep him or her active for as long as possible.

Caring at home for someone who has dementia takes a lot of time and work. It also costs money if you hire part-time help. Caring for a loved one at home also may take time away from other areas of your life. Every family has different needs and limits to think about.

By using adult day-care programs and part-time help—whether hired or through family and friends—you may be able to keep your loved one at home longer.

Remember that your own health, both physical and emotional, is as important as that of the person you're caring for.

Deciding to move your relative into long-term care is not a sign of failure in your role as caregiver.

I took Lizzie out for dinner this evening to a place that feels like home to both of us because of the familiar faces, smiles and hugs, and welcoming atmosphere in spite of potentially unpredictable behaviors. Lizzie is at home there, and as usual she had a great time. When Lizzie is happy, so is her twin sister!

I Didn't Know

"You or someone close to you will probably develop Alzheimer's at some point. More than one in five women and one in 10 men will develop the disease. A person who has Alzheimer's will eventually be unable to manage his or her own affairs and will be entirely dependent on others for care. It is a progressive disease, which means a person's condition will never improve and will only get worse."

http://www.emedicinehealth.com/alzheimer_disease_in_individuals_with_down_syndro/article_em.htm

I was not prepared for this disease either cognitively, emotionally, or financially. Call me ignorant, but I did not know the correlation of DS and AD until 2002 when my sister was initially diagnosed with Dementia of the Alzheimer's type common to Down Syndrome. Her earliest symptoms included psychotic hallucinations and delusions. She was 51.5 at that time.

When Lizzie and I moved into our home 7 years ago, life was so much fun because her symptoms were amusing, and she was still engaged in me as her housemate, sister, and friend. However, as the years passed by and when I realized what was happening as I began to see her deteriorate cognitively more and more every week, I fell into the grieving process as I realized I was witnessing the loss of my sister and best friend. The depression was so intense I found myself isolated from everything and everybody in my life except my job and my home life.

I struggled to find sufficient caregiver help so I could get to work in the morning and run necessary errands in the afternoons. This drained me financially, and I have no doubt I will go to my grave with the enormous debt I have accrued for Lizzie's care. Interestingly, I met a man (online no less) who has a disabled son. It was this man who informed me of what benefits are available for the disabled, and so I began my quest for state benefits/help for Elizabeth. That in and of itself will be the topic of another blog SOON because those of you in similar positions NEED to know the game I wasn't invited to play by this state's social worker assigned to my sister's "case" in 1987.

I am certain my parents did not know about this either. I remember our dad once telling me that if anything happened to my sister, that she would be able to live at the VA inpatient home because he was a WWII vet. I have no idea what he was thinking at that time because no such option exists for his disabled dependent.

I think I will take a blogging break because I have written a lot today and am feeling "scattered" in my thoughts and reflections.

ARE

The Alzheimer Support Group taught me the acronym A.R.E.

Don't ... Argue with an AD patient.
Don't try to ... Reason with an AD patient.
Don't try to ... Explain to an AD patient.

Remembering ARE is very helpful for me because I am able to take a deep breath and either walk away (not too far) or respond by saying something like: "Oh Lizzie, put your arms around me!" "OK, what should we do next?" "Let's dance!" ANYthing to switch her focus works.

This strategy helps my stress level diffuse.

Well DUH!

I JUST NOW found a tab on blogger that allows me to view all the comments readers have posted, and I am so sorry I haven't responded to some of your inquiries. Please forgive me!

Socks Shoes Slippers

Yesterday morning I actually fell back to sleep after helping Lizzie in the bathroom at 6:00, and slept until 9:30. Once again, upon wakening, I had that thought of OMGoodness ... what is my sister doing? I found her walking around the house in her night gown, socks, and running shoes. She said, "Let's go!" I should have taken a photo, but I hadn't had my first cup of java yet to think that fast!

This morning (after 2 awakenings), she was wearing slippers instead of shoes, and each foot had a different slipper. When she sat down in the kitchen and stretched her legs, she looked at her feet and exclaimed, "How did THAT happen?" which cracked me up!

My sister's moods change from moment to moment. She can shout out with vengeance: "Leave me alone!" "Don't worry about it!" "I know what I'm doing!" "Go jump in a lake and drown!" "You're a pain in the you-know-what!" The next moment she might lean back in her chair and chuckle whole-heartedly from her belly like Santa Clause.

These mood swings are typical for AD and are not to be taken personally. It is exactly what is meant by the patient "living in the moment" and being unable to reflect backwards in time even 5 minutes ago or projecting forward as well. My sister knows only right "now".

While Elizabeth is cognizant about knowing people are around her, her responses are (more often than not) inappropriate even in familiar situations. This is a moderate stage symptom of AD. Her recent toileting issue of needing assistance because she has forgotten "how" the process goes, however, is a symptom of advanced disease. I am learning that it is not unusual for an AD patient to demonstrate symptoms of varying degrees along the journey.