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.

Where do we go from here?

Hello, dear readers! It’s been a while, hasn’t it? August definitely got away from me, but I have returned. During the time I’ve been gone, much has happened.

1. I left the job I was working. It was making me miserable and impossible to be around. I definitely don’t need any added stress in my life right now, so it was time to move on. I discovered, after leaving, that they did not intend on keeping me long-term anyway, so it was best I got to leave on my own terms.

2. I did a bit of traveling. I’ve been into the city quite a bit to see friends. I went down to Philadelphia, as a childhood friend of mine now lives there and I had a great time. If you’ve never been to the City of Brotherly Love, I highly recommend it! I also went on a short vacation with The Boyfriend and his wonderful parents to the same house they rent every summer. I thought, because of the job, I wouldn’t be able to go, but I did end up going and I really enjoyed myself.

3. I have had to do some re-evaluating and try to make a decision on where I am headed next. My #1 priority at this point is moving out of the house, and into a place with The Boyfriend. He is so wonderful and trying very hard to find employment here on Long Island (he is from Connecticut) and we hope to be in our own place by the holidays.

4. We celebrated Mom’s 61st birthday on Monday. Her brother and sister-in-law came out for an early dinner of barbecued chicken and I made a yellow cake with chocolate frosting. It all went over very well! Mom always perks up when her brother is around, and we all have a good time laughing. I got a great photo of her wearing one of my Dad’s baseball caps backwards and them laughing.

5. Since Mom’s stay in the hospital, we’ve noticed a change. She’s a bit more confused now. She also gives her aide quite a hard time in the morning. She cries in the shower, she yells, she refuses to do things (like brushing her teeth or having her hair blown dry). This past Tuesday (the 2nd), she even had an episode at the day center and I had to go and get her. I took her straight away to the doctor. Around the time that Mom was in the hospital, we made the decision to try to bring her off of the Seroquel that she had been put on last summer. It can have a great deal of side effects, and it’s the kind of thing they want to try to get patients off of if at all possible. Apparently, it is NOT going to be possible with Mom. She had gotten down to one half-dose in the evenings, and then these morning behaviors began. She is now also on a half-dose in the morning and I hope the morning behaviors will start to lesson. I am not sure how I feel about having to get her back to a whole pill twice a day, but these behaviors are not good for her. She gets so wound up, I worry for her health, her safety, and the safety of those around her. I know it is not ideal for her to be on this medication, but I don’t really know what else to do.

Going on in the future:
Mom will be spending a day with one of her cousins while Dad and I go to a concert. We are really looking forward to this, and Mom ALWAYS has a great time with this particular cousin of hers.
The Boyfriend and I are headed to the Catskills at the end of the month to get away from, well, everything. Possibly get in a canoe or something. Pictures to follow!

And I promise to go back to weekly posting. I hope.

Pneumonia & The Hospital

Things can change at the drop of a hat.

This past weekend, Mom developed a wet cough that wouldn’t seem to go away. Fortunately, Dad had this week off from work already as his “summer vacation” (poor guy, some vacation it turned out to be!) so he took Mom to the doctor Tuesday morning. The Physician’s Assistant felt it was an allergy and prescribed Flonase.
Two days later, Mom woke up around 3:30am very disoriented. She had a fever of 103, that dropped and spiked throughout the morning. Dad took her back to the doctor in the afternoon, only to have the doctor send them immediately to the ER where they ran bloodwork and a chest X-ray. Mom has pneumonia.
They kept her overnight and Dad stayed with her. She was a VERY unhappy camper being routinely woken up, pricked with needles and jostled from one bed to another. There was a lot of screaming, crying, and confusion. On Friday morning, I went to the hospital to relieve my Dad and get in the face of some of the doctors and nurses. It should be their first priority to get the Alzheimer’s patients OUT of the hospital as quickly as possible. Keeping them longer (unless ABSOLUTELY NECESSARY) only serves to further agitate them, making their behaviors worse and worse.
Mom was finally discharged with an oral antibiotic around 5:30pm on Friday after having been at the hospital for about 27 hours. Yesterday (Saturday) she slept most of the morning away and had a bit of an episode in the afternoon. I think she was wound up from the coughing and still confused from the past day’s excitement. Today she seems a bit better and has been cleared to return to her day program tomorrow.

Seeing Mom in the hospital bed in the ER on Thursday was very scary. She looked so tiny and scared, I just felt so helpless. I wanted to get her out of there, but I also wanted her to get better. Let’s hope these antibiotics work and she starts to feel better soon. Our goal is for her to get back to her baseline and that there aren’t any leftover side effects of the fever.

Routines & Dinner Guests

Last Friday, I took a chance. After the Aide (who has a name, but for her privacy, I won’t use it) arrived, I left for Connecticut. This was new, because any time I’ve left to go somewhere while the Aide was here, I was within half an hour from home. Not this time. Everything seemed to work out just fine, Mom was doing great when my Dad got home from work and there were no problems.

I had a great time in Connecticut, spending the weekend with The Boyfriend and his awesome family. I have to admit, I really gravitate toward his Mom. I’m sure it has SOMETHING to do with the fact that I can talk to her in a way I can’t with my own Mom anymore. But also, she is just so wonderful in her own right! I am so glad she is a part of my life.

While I was gone, the Weekend Aide came for the first time. The person they had set up called out sick, so they sent us a back-up person, who lives almost an hour away. They also called me three time around 6am (which I did not see until 9, because I was asleep) to let me know what was going on. I called them back when I got up to let them know that my Dad should be their main contact, not me. Anyway, the woman came and she was very nice, but my Dad was already in the middle of getting Mom ready, so he just did it himself. He ran a few errands, and then came home for lunch, but when he went out a second time, Mom was very upset and told him “there are strange people in the house”. It was then that Dad decided we should only do weekends if we can get our regular Aide to come. She has some personal things that keep her from committing to every Saturday, but we are all hopeful we can work something out (like every other Saturday, or a shortened shift).

This week, things have been pretty calm (should I even say that? Am I tempting the Thing from high atop the Whatever?) and I think we are finally getting into a bit of a routine. Mom is very comfortable with the Aide now. She calls her “my Person”, because she never remembers the word “Aide”, and I hear them giggling in the living room together while I work on the computer. Mom also tells the Aide things now, which is really nice to see her so talkative. She gets very tired in the evenings, though. I think her routine wears her out, between getting up early and all the activity of traveling and the day center. We have not started her on the anti-depressants yet, so she might even get MORE tired. We’ll see.

On Monday, we had a family friend and his wife come for dinner. Mom recognized him by name and was polite to his wife (who I think we’d only met once before). She seemed okay through dinner, but quickly got tired afterwards. I helped her get ready for bed and then joined my Dad, our guests and The Boyfriend in the living room. When our guests left, Dad checked on her and she was crying. There must have been a disconnect for her after I left the room. All she could hear were voices and she didn’t understand that it was her family and our guests. She said to my Dad, “there are strangers here!” She seemed to calm down pretty well once Dad went to bed and slept fine. The next day I said “wasn’t it nice to have company” and she told the Aide all about our dinner guests. I think in the future we’ll be inviting people on the weekends so they can come earlier, during Mom’s peak hours.

Curve Balls

Never get too comfortable too quickly, because the Universe is setting up to pitch you a curveball – guaranteed.

Last week, the aide started. I mentioned in my last post that Mom had some trouble adjusting on the first day, so on Tuesday, the Aide came in at 6 and let Mom sleep until 7:30am. She seemed to be better after that. I laid out Mom’s clothes, but I let the Aide take Mom through her routine. By Wednesday I was going back to bed at 6 and getting up around 8. They seem to do alright together and the Aide really understands where we’re coming from. Mom likes her, and that is all that matters to me.

Of course, nothing is THAT simple. On Tuesday I got a call from the Day Center around 11am that Mom was agitated, screaming that someone was trying to stab her baby, and they wanted to know if I would come get her or if they should call 911. I went to get her and called the doctor. We went in and spoke to a resident med student (never doing that again – what terrible bedside manner!) who then brought in our regular doctor. After the violent hallucinations Mom had back in June/July, I was not playing around. We weren’t leaving until they could give me some answers. The first thing they decided to do was bloodwork and a urine sample. After I got Mom’s urine sample, we went back to the examining room and waited. Eventually, the doctor came back and said, “your Mom has a UTI” and I went “YES!” I know, I’m a terrible daughter. BUT – a UTI very commonly causes outburst behaviors in dementia patients. Having a UTI could be what was causing Mom’s outbursts and that meant it could be treated and the behaviors may very well go away. We were given a script for an antibiotic and sent on our way.

On Wednesday, I was called AGAIN at 11am, and told Mom was having another outburst. This time I decided to go to the Day Center and just talk to Mom. They set us up in the kitchen with a cup of tea and we just talked. I told her I was fine, no one was trying to hurt me, and that I have a big Irish Boyfriend to protect me. She liked that. Then she repeated it…to everyone. (Note: I hope no one at the center thinks my boyfriend is a wild maniac or something!) I got her to stay calm and relax and was able to return home. She was fine upon returning home and sat with the Aide until my Dad came home so I could do some work on my magazine.

Thursday, I got ANOTHER phone call, this time at 9:30am to tell me Mom was sad and crying because she didn’t understand why she had Alzheimer’s. I felt conflicted in that moment. I wasn’t going to go and pick her up for crying, but I felt for her. Since her own Mom had Alzheimer’s, she knows how scary it can be. She knows what it’s like to be me in this situation (and she’s the only one!) I wish I could ease her pain, I really do. But I just reassure her that Grandma got sick 30 years ago and medicine and science are different now. Things don’t have to be they were for her Mom.
The other side of the coin was anger. The people at the Day Center know our story. They know we got Mom set up with Medicaid and the Aide and the transportation to and from the Day Center so my Dad can have peace of mind while he’s at work and so I can MOVE ON WITH MY LIFE. How am I supposed to do that if they call me every time she gets upset? I can’t keep running up there every day; she’ll never adjust to this new routine if I do. And if they insist on calling me all the time, I will feel guiltier and guiltier about leaving. And I need to move on. I need to go. I can feel it in the air…the time is inching closer where if I don’t leave, I never truly will. Very soon the time will come and I will either need to jump, or accept that I am here forever.

P.S. Don’t ask me about the transportation company. I can’t discuss it without dropping some VERY un-ladylike words. More on that once it’s less of a pain in the @$$!

They make a 6 in the morning?!

*YAWN*

I got up at 6am this morning to meet with my Mom’s aide and help her through our first morning routine. She is very nice and attentive. She asked questions and took initiative, and Mom felt very comfortable with her. In fact, when it was time for a shower (which I assumed would be the most difficult part) Mom just undressed, not a care in the world!

We will have to work out a few things, though. The aide needs to leave a little before 9am to get her own daughter off to school, so we may need to ask for the bus to come earlier. Also, we got Mom up and showered at 6:30am, so by 7:30 she had already eaten and was asking why the bus was late. Of course it wasn’t, she was just up an hour and a half earlier than normal! So while we want the aide here so Mom will never be left alone, we also don’t want Mom just sitting around for over an hour waiting. In fact, I received a phone call around 11 from the day center that Mom was agitated and wanted to go home. I asked that they try and see if they can calm her and get her to stay the full day and we will get her up later tomorrow, and I haven’t heard anything else from them, so it must be alright.

It’s definitely going to take some tweaking to get it right. Obviously I feel bad asking the aide to sit around at 6am, but clearly getting Mom up before 7 or 7:30 is not  a good idea.

The One Left Standing

At the end of this whole process, we managed to conquer the American Healthcare system and lived to tell the tale.

Don’t get me wrong. I am not so naive to think this process is “over”, because I know as my Mom’s condition worsens, we will have to adjust her care and go through ridiculous processes like this one all over again. But in the meantime: we won.

As I mentioned in my last post, I began cold-calling agencies to see if someone in our area could take on Mom’s case. I received several positive responses and one of them (based about two towns over) took us on. We met with the intake nurse on Thursday to set up a Care Plan and the nurse will arrive at 6am on Monday. This is actually EXCELLENT timing, because Monday is also The Boyfriend and mine’s two year anniversary and we have big plans that night. Mostly I am just excited to get into a solid routine and start planning for us all to take a big, deep breath and get ready for whatever comes next.

In the meantime, Mom seems to be doing well with the weekdays on the bus and at the day program. She sleeps through the night and doesn’t sundown quite so badly. I hope this is all a good sign and not a false sense of security. She is still my Mom and I want her to be able to enjoy things in life. For example, my Dad bought Disney’s “Frozen” on DVD and we all watched it together this evening. We also went to the outlet stores as a family for some shopping (we had coupons! I got sneakers for $5!) and the weather was lovely.

Thank you, dear readers, for keeping up with us. Please leave comments of advice/encouragement/suggestions and I will continue to keep you posted on how Mom fairs with the aide. Also, please enjoy that photo of my Mom today, coloring!

Love & Light,

Jordan

The Saga of the Aide

I know I’d been doing well with the weekly posts on Saturday/Sunday, but there is so much going on that I didn’t want to half-ass a post this weekend when I’m feeling overwhelmed that all that’s happened.

As I mentioned in my last post, we had a doctor’s appointment for Mom yesterday (Wednesday). We mentioned to the doctor that she has become more anxious, she paces, and she doesn’t want to participate in activities at the day center. The Doctor suggested we adjust her medication and she will now be taking another dose of the Seroquel she was prescribed over the summer each day. We will split the dose in half, adding it to her morning & evening pill regimen (yes, this was discussed with the Doctor. We don’t mess around with medications!) We started this new dose this morning and we’ll see if it has any effect. In the meantime she is currently driving me absolutely NUTS with the pacing as we speak. She’s currently pretending to be asleep on the couch so that I leave her alone. (Clearly not all the mind is gone, proof!)

So we have been waiting for word from Fidelis about getting the aide in and everything. As we had a March 1st start date, I expected our “Welcome Packet” in the mail right away. Well it’s the 6th and still nothing. Being the Squeaky Wheel Queen, I called Fidelis. Twenty minutes later, this is what I was told: Mom was approved for 24 hours a week: 4 hours a day M-F and 4 hours on Sat. She would also be attending the Day Center M-F. Ok, fine (though the intake nurse told us 7 hours on Sat, but whatever). The representative told me our caseworker would call tomorrow or Saturday and set everything up.
About forty minutes after we hung, the caseworker called me (she is from Buffalo!) and we discussed the plan. She said the rep was wrong and it IS 7 hours on Saturday. She did tell me that it could be problematic to get someone in for two hours at a time, for two shifts a day. I can understand this: if it was MY job, I wouldn’t want to get to work at 6am, leave two hours later and then return 9 hours after that for another 2 hours. What a waste! Anyway, I told her we were open to having two different people but she mentioned another options: every case is assigned a nurse who you call if you need to alter your services. If I called the nurse and explained in more depth what my Mom needs, she might be able to offer me extra hours, thus eliminating any holes in coverage and making it easier for an aide agency to provide us with help.

Mom goes to the day center tomorrow morning, and I will post more once I hear back from the caseworker. Hang in there with me, readers!

Also, if you have experience with an HHA agency or a situation similar, please leave me a comment. I can use all the insight I can get!

 

Welcome to March

The ongoing story of The In-Home Aide. So, I was naive to think I knew what the situation really was. A “March 1st Start Date” really means that’s when the coverage kicks in. Hopefully next week we will receive our “welcome packet”. We will have to speak with Mom’s case worker at Fidelis after that and choose an at-home aide agency and also put the case worker in contact with the day center to set that up as well. In the meantime, we will begin Mom three days a week at the day center to try to keep her better acclimated to that routine and so it won’t be a tremendous change when the services begin. Keep your fingers crossed this part goes quickly (though I’d be shocked if it did!)

Monday, Mom went to the day center and The Boyfriend and I enjoyed a few hours to ourselves. Mom came home and was pretty calm into the evening. After he left on Tuesday, Mom continues to look for my boyfriend. He parks in front of our house when he’s here, so if she sees someone park across the street or if someone shows up with a similar vehicle, she says his name and tries to tell me he’s here. It’s very reassuring that she’s retained who he is considering how sick she was when he and I began dating about two years ago.

Tuesday was AWFUL. I mean really bad. Once again, my patience was tested. I have been having some joint pain and I had a doctor’s appointment to see about treating it. I did not want to take Mom along because taking care of her is one thing – taking care of her with the flu or stomach virus is something much, MUCH worse. So while I tried to find someone to watch her, I could not get her to stay in one place. She was anxious and kept changing her mind about what she wanted: breakfast, to go back to bed, a shower, to get dressed, to be left alone. Eventually, my wonderful cousin took her so I was able to go to the doctor and focus on myself. Mom really never bounced back that day, though, and was very sluggish the rest of the day.

Wednesday, Mom went to the day center. When I picked her up, the woman who heads her particular program spoke with me briefly about Mom’s anxiety. She explained that Mom always was trying to stand up and wanted to be out of a chair. She was fidgety and clearly anxious all the time. She suggested we mention this to her doctor. Dad and I had already discussed this same issue, but it was good for me to know that it was going on at the day center and not just at home. I think it is time to adjust the medication she takes. We have a doctor’s appointment on Wednesday evening this coming week, so hopefully she can help us figure that out.

Thursday, Mom and I had a GOOD DAY. Yes, one good day! Hallelujah, I will take it! Mom stayed in bed in the morning long enough for me to get in a shower. Then we got up and got going. We ran a few errands and then had lunch. I really wore her out in the afternoon by cleaning out her dresser. When the aide does finally arrive, we would like to limit the rooms in the house she needs to be in. The way it was before, Mom’s clothes were in her closet in the computer room. Now Mom’s close are in her dresser in the bedroom, so the aide won’t need to ever be in the computer room. Clever, huh?

Friday Mom was a little more anxious and she didn’t want to be out of the house very long. We dropped some clothes off at a local church and then returned to finish cleaning her dresser up. When we went out, we drove past the nearby lake where there were many ice boaters out enjoying the freezing temperatures. Mom has always loved ice boats; she is fascinated by them. But on Friday, even with the lake absolutely teeming with them, she wanted to go home. It is sometimes sad for me to see her so disinterested in things that once brought her great joy.

I Don’t Know

This seems to be my Mom’s answer to the ever-present “what’s wrong” question lately. She doesn’t know. To me, that means something IS wrong, she just can’t identify it, which is frustrating and scary for BOTH of us. But I’m trying to hang in there with her and talk her through whatever is happening to put her at ease.

We’ve finally had some movement with the Aide Situation. On Monday we were contacted by Fidelis and a supervisor got the intake nurse to call us. We made an appointment to see her on Tuesday morning, but we were due for snow then, so she came MONDAY NIGHT after dinner so that we wouldn’t miss the deadline for a March 1st start date! The next morning, a rep from Medicaid told us if we were approved we would receive a letter. If we were denied, we would receive a phone call. We’ve received NOTHING so far, but we are eagerly awaiting SOME kind of response. And in the meantime, we are preparing ourselves to have an aide in the house in a week (if we don’t, we just go on as we’ve been doing).

Monday Dad had off from work and the day center was closed for the holiday. I ran a few errands and we pretty much had a quiet day. Of course, the following day was a NIGHTMARE. Mom would not leave me alone for a minute and I thought I was going to lose it. I tried to do a twenty-minute yoga workout and she just kept walking into the middle of what I was doing. She got annoyed when I didn’t answer her right away or give her enough attention…it just pushed me right over the edge. I think the idea that help is coming and SO CLOSE is making these moments even HARDER to deal with. Because very soon, they could be fewer and farther between.

Mom went to Day Haven on Wednesday and Thursday this week. I left for CT to spend time with the Boyfriend on Wednesday night and Dad dropped her on Thursday morning before taking the day to himself. I think it was good for him to get some time to TRUELY be alone, which he rarely has. Plus The Boyfriend is back to work, so I was alone at HIS house on Thursday. I got to have a phone date with one my best friends and spend some quality time editing for the magazine of which I am Editor-In-Chief.

Friday,  Mom and I went to her brother’s for lunch. We had a nice time until my Aunt and I started discussing doctors and it was clear Mom wanted to go. She gets lost in conversations some times when she can’t follow, which causes her to become agitated. Once we were in the car she was much better and even agreed to go to Target with me. She definitely wasn’t at her best, though, because the fog was so thick and grey. It even brought me down!

Today I took Mom to a baby shower for a family member. She did last about an hour and a half, but I did have to leave my meal behind (a little miffed about that). It WAS a very small room for the number of ladies in attendance. It was such a beautiful place, though, right on the water and the sun was shining! I hoped she would hang in there a bit longer. I thing being in the sun made her TOO warm, though. I’m grateful to my family for being so understanding, though, and didn’t say anything about us leaving.

Now we hope that Medicaid gives us some kind of notice soon and that NEXT SATURDAY, the aide will start. Which means we need to take time over the next six days to prepare ourselves. The Boyfriend will be down tomorrow evening, and Mom will go to the day center Monday. Then we’ll be alone again Tuesday, Thursday and Friday. Hopefully the snow they’re calling for on Wednesday won’t close the day center! But what I really hope is that Mom will adapt to this new situation. I do feel quite scared sometimes. Are we doing the right thing? Will she feel that we’ve given up on her? Does she know we love her and we’re just trying to find a balance between what’s best for her and what’s best for us?

Did we make the right decision?