Farewell

Another four months have come and gone. Big changes ahead. For your information, here is The Whole Story:

After my last post, the morning aide we were working with left us. She is battle breast cancer and is too weak to work (understandably) and the Aide Agency was unable to find us a replacement. Therefore, I have been home with Mom in the mornings since May. During this time, I have done EVERYTHING in my power to stay focused on being 28 and living my life: I finished my internship, I began going to concerts more (I love live music) and hanging out with friends. All the while I continued to battle with both the aide agency and the insurance company to help us.

In June and then again in July, we had two incidents in which Mom soiled herself. The first time was a weekday and I had to clean her up so she could get on the bus for her daycare program. The second time I was alone with her on a weekend while my Dad was doing an errand. Both times were horrible, emotional, and beyond my limit. It was on that day in July, crying as I washed my Mom off in the shower, that I knew – it’s time.

I am moving out.

In 9 days, I will be relocating to the greater Washington DC area. I have several friends who live in that area and an Aunt nearby, all of whom are very supportive of me making this move. I will be couch-surfing for a while and then house-sitting for a friend and that will take me well into the Autumn. I am excited and nervous but ready.

When I told Dad it was time for me to go – that there would never be a “perfect” alliance of the stars – he was stressed and upset, to be sure. But the urgency of me putting an end date on my time here seemed to be The Great Motivator – we will be starting with a new morning aide next week that Dad found and she will also be helping him on the weekends. Perhaps this will also motivate our extended family to help him out a bit more. We will see.

I’m going to leave this blog here for anyone who might be looking for some help or just reassurance that they’re not alone. Because you’re not. I highly recommend the Alzheimer’s Associate message boards. Even if you’re freaking out at 3am, someone will be there for you. Try to think outside the box with each new issue that arises – don’t try to force yourself and your loved one to maintain a lifestyle that is no longer plausible. Never be afraid to ask for help.
And when it’s time – let go.

May you all find peace and a little slice of quiet.
With all my love,

Jordan

Hope Spring’s Eternal

It has been over three months since my last post. So much as happened and yet not much at all. Let’s see if I can back-track.

– In January, Mom was visited by a nurse from Fidelis to do a priority assessment (which is procedure after someone has a prolonged hospital stay.) The assessment was then promptly lost and we were left to try and figure out how to get Mom through her days on the regular schedule of 3 hours with the aide, 6 hours at Bellhaven and 3 hours with the aide again. She did manage to recover her baseline over time, and we started working with a wonderful new afternoon/Saturday aide in January. I also started an internship with a literary agency in NYC 2.5 times a week.

– In February, things began to unravel quickly with the aide services and the day program. Bellhaven was unable to redirect Mom during lunch and that made the afternoons impossible. Mom’s Geriatric Psychiatrist prescribed another half pill of Seroquel around lunch time and that quelled the issue. The aides, however, were not so easily dealt with. The aide Mom has been working with since last March continued to leave early/come late, which is just unacceptable. I understand she has small children, but Dad and I cannot keep trying to fill in her lack of availability – that’s of no help to us! At the end of the month, the aide agency removes the afternoon aide that we really liked (so she could take a full-time case, which we understand is where the money is) and sent us a new person WITHOUT WARNING US. She went to the wrong house and arrived TWO HOURS after Mom came home. Luckily, it was on a  day that I was not in the city, so I sent her away when she arrived and promptly called the insurance company to find us a new agency. They did, swiftly, and they were supposed to start up in March.

– March came and with it more drama. The new agency had a problem with the person who was supposed to take on the case and I ended up staying home with Mom for a week and a half. I become so frustrated with dealing with all of this (that I’d SWORN I wasn’t doing anymore) that I sent an email to the literary agency telling them that I’d have to quit. They refused. They’re all so lovely and I am so lucky to have been blessed with them walking into my life at EXACTLY the time I needed some unbiased people to support me in separating myself from this situation. In the end, the agency eventually found us two very nice women who are both closer to Mom’s age so we won’t have to worry about them rushing home to small children. The one in the morning is a little too chatty for 6am, but if she is willing to work with us, she can chat as much as she wants. The afternoon aide is Filipino and acquainted with my best friend’s family, so that puts us at ease.

It is April now and I have a great deal on my plate. I continue to work as EIC of my literary magazine, The Rain, Party, & Disaster Society. I am currently participating in a performance piece for a friend who is obtaining his MFA from the University of Buffalo. I’m also working with a very dear friend on a new storytelling venture of hers that will be going live soon. On top of all of this, the internship will soon be over and it is officially time for me to find full time work and remove myself from my childhood home – once and for all. I see the frustration and fear on my Father’s face when I lock myself away in my room or disappear for hours at a time to the local Starbucks to research job openings and new cities to consider. Between my need to move on and my Uncle’s insistence that he and my Aunt will not last another NY winter, I know my Dad feels he will be left alone with the full responsibility of my mother on his shoulders. But I know he can do it. I have gotten them to a much better, much more secure, much more stable place than they were headed for when I arrived in 2011. And while I would NEVER go back and undo my choice to return to Long Island that November, I know the time has finally come for me to go back out again.

I have recently been reading through my mother’s journals. I am very lucky that she felt so compelled to write all of the time because there are things, maybe even things she wrote without a second thought, that are teaching me so much now. There are things in these pages that I cannot ask her, things she can’t tell me, but here they are written down. At times, she speaks in a voice as though someone besides she would be reading her words, like she knew this is where I would come when I could no longer go to her. Some people might think it unfair to read through these things while she’s still alive. I’m sure if they had no children, my father (who never so much as PEEKED in one of these books in the 40 years they’ve known one another) would burn them upon her death, sending all of her most private thoughts on to the next world with her spirit. But she wrote them down for a reason, and that reason is me.

I envy my mother, as she lost her own mother at 38, and I am not sure we will have another 10 years. Or, if we do, I am not sure what kind of years they will be. Regardless, I am glad to still be learning from her, though the lessons I have gained are from a woman of 40 and not of 61. I hope I am doing right by my mother, doing her proud.

“Our families are diminishing in with each generation. When her grandparents are gone, what will Jordan have?” – Janet B. Rizzieri, April 13th, 1995.

I have you, Mommy. I have you.

Christmas Bells, Those Christmas Bells…

Good news: Mom is now home from the hospital.

She was released last Friday and is no longer on an anti-psychotic. She was in the hospital for two weeks total. Upon her return home, Dad and I struggled with the question of whether or not we did the right thing. We saw Mom’s Geriatric Psychiatrist this evening and she assured us that, under the circumstances of Mom’s “catastrophic behavior” (which is doctor speak for aggressive/violent behavior) it was a matter of everyone’s safety and we had no other option than to temporarily hospitalize her.
So many things have occurred since then. Mom does not move like she used to. Now she shuffles along hesitantly and has a great deal of trouble with steps. I think her vision may be blurry or out of focus and this is causing issues with depth perception. I think depth perception is also giving her trouble with feeding herself because it takes a while for her to get the fork or spoon into her mouth. Another problem with food is that she does not have much of an appetite and is feeling nauseous, so she is not eating. Today’s appointment involved moving her evening meds to the morning and vice versa so that she might feel better (and be more inclined to eat) during the day time. Mom has not been aggressive at home but has showed some minor signs of agitation at the day program. YES, good news – she went back to the day program with the wonderful people who we love. I think sometimes Mom gets overstimulated from too many people talking there, so she gets upset. But generally she is alright there. We are mostly concerned with her eating habits and that she is not sleeping through the night. Hopefully the new doses of her meds and the reversed schedule of them will help with both her appetite and her sleeping patterns.

We expressed to the doctor that we feared we’d made Mom worse from being in the hospital. She explained that sometimes taking a person off of a serious medication like an anti-psychotic can actually reveal the true depth of the effect of the disease. Sometimes medication or a combination of medication can give a person more alertness when the internal effects of the disease are far worse than you realize. The psychiatrist explained it is unlikely the time in the hospital was that horribly detrimental, but may have been scary for my Mom and she requires a period of adjustment to feel comfortable at home again.

We hope that Mom does adjust and things quiet down a bit. Christmas is almost here and we will be spending it at home. We will be visited by Mom’s brother and his wife, and then The Boyfriend and I will be off to see his family. We wish you all a very merry Christmas or Happy Hannukah (if that is your holiday), and a peaceful and joyous new year. We are ready to meet the challenges it brings us and hope to have a few joys as well.

rizzieri_family-01 (1)

Peace & Love,

Jordan

Give Thanks

It’s been almost two months since the last time I posted. Sorry to keep everyone in suspense, but every time I even considered posting something, I couldn’t bring myself to type. Living with my Mom and all her ups and downs is not something I want to re-live, which is what happens when I post. Let’s see how much I can get through:

In October, Mom’s morning behaviors escalated. She had been screaming, crying, beating her fists on the wall – basically throwing tantrums. One morning I got up and found her wielding her bedside lamp like a broadsword. I yelled her name and she dropped it, I think stunned. I can’t imagine what would have happened to the aide had I not been home. She would calm down, only to get upset again when it came time to get on the van to her day program. She wouldn’t sit down. I’m not sure why, she has no trouble sitting in a chair or on the couch – but this she won’t do. It continued to escalate through the month until we finally got her an appointment with a geriatric psychiatrist.

Dad took her. The Ger.Psy. is great – she really speaks to Mom directly and knows what she’s doing. Nothing shocks her. She added a new medication for Mom and we waited to see what would happen. Then, almost two weeks ago, I got a call from the Day Program to come and get Mom. When I got there, it was like a war zone – she had destroyed the place. There was furniture up-ended. She picked up a computer monitor and threw it across the room. She broke a printer. She was completely out of it, laying on a couch, surrounded by five staffers. I was embarrassed and concerned and angry and exhausted. So I took Mom home and we contacted the Ger.Psy. to figure out what to do next. We watched her for the weekend and then took her in on Monday. Her meds were adjusted again and Dad and I remained home with her for the next two weeks, watching to see if the aggression subsided.

It didn’t.

About five days ago Dad took Mom to the local hospital (the one the Geriatric Psych is associated with) to have some tests done and then Mom was admitted to the geriatric wing of a psychiatric hospital so her medications could be constantly monitored. It was not an easy decision, nor was it one that we took lightly. But to take off from work to stay home with Mom was not the answer. We could only tell her doctors what we were experiencing, what we were seeing. We are not trained professionals who understand the different medications that are available or what we should be expecting as dosages increase and decrease. Being in the hospital is what is best for her at this moment. It is also not a long-term facility. Our goal is to get her meds at the right place so that she can come back home and either return to her day program or to stay home with an aide. Once she is released from the hospital, the insurance company will send a nurse to evaluate her needs and see about allotting her more hours with an aide.

It’s important, at this moment (and with it being the holidays) that my Dad and I have received such an overwhelming amount of support from our family and friends. They know we’re not putting Mom somewhere and forgetting about her. We have agonizingly considered all of our options and know this is what is best for everyone. Dad and I must keep living our lives – that is what Mom wants. Not what she would want – it is what she wants for both of us, in her heart of hearts. So onwards we go, doing the best that we can.

Balancing Act.

How many plates can you spin on those long sticks? Sometimes I think the answer is none.

Last week I received an offer for a receptionist position at a salon about 40 minutes from my house. I was so excited to get started, and the job is great. It’s fast paced (which means I feel like I’m earning my paycheck) and there is a lot of room for my position to expand into other avenues. I already feel like I’m doing well.
My first day was on Tuesday, and each day is on the long side. I didn’t get home until after 9pm on Wednesday, only to receive a text from Mom’s aide that she wouldn’t be coming in to get Mom ready in the morning because she wasn’t feeling well. So instead I got up at 6am (and Mom KEPT me up), got Mom ready and stayed up until she left on the bus. By then it was 8:30, when I would be getting up anyway, so I remained awake until it was time to leave for work. By the end of the day I was shot – and frankly, pissed.

I’ve had several conversation lately with different people in regards to Nursing Homes. Now, we aren’t anywhere NEAR the point of considering putting Mom in such a facility. But others I know have had to deal with nursing homes in a variety of situations, and all of them come back with such negative experiences. And while I absolutely empathize that nursing homes are usually understaffed and the staff they do have is overworked, coordinating at-home care is just as complicated. Technically, when my Mom’s aide is unavailable, she should communicate that to the HHA provider (her employer) so they can send a substitute. But we don’t WANT a substitute, it’s not good for Mom and she will surely fight help from a complete stranger. So instead, we let her tell us when she can’t come in. We think she’s great and when’s she’s here, she takes great care of Mom. But I don’t know what she THINKS will happen when I don’t live here. I am certainly not getting up at 5am to drive to my parents house to get my Mom up and my Dad can’t take off from work every time this woman has a headache. My Mom has to come first, and whatever that means we will do it.

Sleepless.

I am starting to think Alzheimer’s Disease is like that game Whack-A-Mole that they have at fairs. When one problem pops up, you smack it and think it’s done. But two new issues have already popped up in its place!

Mom has been giving her Aide less of a hard time in the morning. She still can get testy around teeth brushing time and one day last week she did not want to get into the van to go to the day program. Mom’s Aide is FANTASTIC though and has come such a long way in helping us to problem solve. Since adding the shower radio, Mom gives her Aide less trouble with bathing so we have not yet had to alter her morning routine. Someone DID suggest we move bathing to afternoons if she continues to fight showers in the morning, though.

Our new problem is sleeping through the night. The biggest reason this is a problem stems from the fact that my parents still share a bed. There are no other bedrooms in the house, and we can’t just let Mom get up and wander around. And since my Dad still works (and gets up VERY early to do so), he needs his sleep. Part of the reason why I feel so stumped is because Mom does not typically sleep the day away. She stays active throughout the seven hours she is at her day program, and barely naps for a half hour in the afternoon until dinner. We try not to let her go to bed before 8pm to insure she’s not going to pop out of bed at 3am, but it still happens.Not sure exactly how to combat this, but it is something we are going to have to figure out an answer to soon.
Do YOU have a Loved One with Alzheimer’s who wanders at night? How do you handle it?

Also, we just had a family friend over for dinner this evening. As New Yorkers, we tend to use some pretty strong language. When I was growing up, my Mom never hesitated to use swear words in front of me – and she used them all. Now, when someone swears, she gets this look on her face. And when she gets into a mood, it takes a long time to get her out of it. Our dinner guest happened to drop a swear word early on in the evening and Mom just shut down. It was pretty jarring to see, as this individual is someone Mom has always been particularly fond of. I took her into her room and she laid down fro a bit until dinner time. She seemed much better after that, and even seemed to interact with our guest in a much more familiar way. It’s so strange, though, to see such a tough lady take such offense to a curse word!

 

Evening Out

In my last post, I mentioned we were still having trouble with Mom and the shower. A few of you offered some really helpful advice, all of which I have banked for the future. As of right now, Mom is doing much better in the morning. I’m not sure if we needed to give the Seroquel a chance to kick in, maybe that was it. Maybe having the shower radio is helping, too. (I know I am enjoying it, haha!) I’m feeling a lot less stress knowing I don’t have to jump out of the bed to the sound of my Mom shrieking. Does a number on the nerve, that sound.

We have noticed that Mom gets extremely lethargic at night. Right after dinner, she starts to shut down, and it has been a struggle lately to get her to take her evening pills. It could be the morning dose of Seroquel; it could be that they are wearing her out at her day program to keep her busy and prevent any more episodes from happening like she had a few weeks back. We try to keep her focused at this time, so we can get through taking pills and then sit for a bit in the living room after dinner. She seems to want to go to bed right away, but sometimes it’s not even 7:30pm yet. If we let her go to bed early, she will definitely get up throughout the night. As she still shares a bed with my father, this can be extremely problematic. So we try to keep her up until at least 8pm. We will have to monitor this and see if it evens out.

In the meantime, Autumn is approaching, so soon I will take out some of the fall decorations and that will DEFINITELY cheer up my Mom! Autumn and Halloween are her favorites, so she should be thrilled to see her old scarecrows and leaves around the house.

What’s YOUR favorite part of the fall?