Dementia

No kidding

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Life has been busy the last couple weeks with the holiday season rolling in and working full-time. I will be working every day this week except Christmas day. Although I like my job, I am not looking forward to this week since I will be working the next 6 out of 7 days.

I had this weekend off. My uncle and cousins flew into town from Texas to say good-bye to my mom. We were told this past week that the nurse was considering putting her on hospice tomorrow. She had a UTI over the past couple of weeks that speeded up her trip downhill. I kind of blamed myself for that, although I know it’s silly. The times I took her out of the assisted living facility I had to help her with the bathroom and I told myself I didn’t do something right. Why do we tend to blame ourselves for things outside of our control? I realize it’s foolishness.

Now my mom is struggling with daily activities more, like walking. My mom was always physically active so it is hard to see her like that. The dementia is starting to ravage her body now as much as her mind. She still knows who I am, but she just repeats nonsense words. She kept saying no kidding over and over. But her voice was so quiet I had to go closer to hear expecting something meaningful, but just to get a no kidding. The rest of the time she just blankly stares at me.

No one knows what to say when they don’t feel like there is anything they can do to change the situation. I just feel this nagging sadness and overall numbness right now.

No kidding.

A harsh winter is on the way

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Just like that, the holiday season has begun. Winter weather came along with it blowing its harsh cold winds. We have snow on the ground and had a few days of subzero wind chills.

We hosted Thanksgiving here which turned out being very busy with a total of 18 people. The weather was very cold and I am thankful Angel and Paul decided not to run the Turkey Trot in order to help me out more. I didn’t ask them to forgo the race to help me, but I couldn’t have done it without their help. They helped me pick up my mom and Matt to bring them to the party. I didn’t know it yet, but my mom’s health had declined since I last saw her.

I dished up my mom and Matt’s food, giving my mom easy to eat foods and Matt whatever he wanted. My mom didn’t even notice this time when Matt ate foods she wouldn’t let him eat. This was confusing to Matt. He didn’t understand why he didn’t get angry when he ate foods with gluten. He asked mom if it was okay and she didn’t respond. I told Matt that God had healed him and now he can eat whatever he wants and be fine. Matt said some day mom would be healed when she goes to heaven. Matt said he would have lots of energy when he gets to heaven and that he would be able to run very fast. Oh, to have the faith of a child and be ignorant of everything around me.

My best friend’s family also celebrated Thanksgiving with us. The youngest member of their family arrived in late summer. I spent some time holding the new baby and feeling jealous of my best friend who now has 4 grandchildren and another on the way. I spent the weekend after Thanksgiving working and this past weekend we had our first Christmas party with my mom’s siblings and their families.

It was a difficult family party because everyone there spent some time saying good-bye to my mom. It will very likely be the last Christmas we spend with her. My mom didn’t talk a lot but when she did it didn’t make much sense. She told everyone she died on her birthday. And in some way she sort of did. Back in August, she was angry with me and agitated she wasn’t in control. Now she doesn’t seem to even care. She needs help going to the bathroom and even eating. We had a heck of a time getting her in and out of the vehicle. I wasn’t even sure we would be able to convince her to go anywhere.

My mom is almost gone now. The family has been coming to say their good-byes. I’m going to try to see her as much as I can before she is gone. In many ways, I wish we knew what was going on much sooner. Maybe we would’ve been less frustrated with her inappropriate behavior. I can’t pinpoint when my mom first left us, but she has been gone for several years now. It started so gradually, but now the time is going fast.

Assisted living

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I scheduled an appointment to visit an assisted living facility with my parents after my mom’s birthday in early August. They had two immediate openings for two rooms next to each other with a shared bathroom. They were willing to take both my mom and dad, although my mom needs memory care and my dad has a physical disability. We jumped at the opportunity. Finally a windfall!

My aunt threw a birthday party for my mom on her birthday which I attended. My mom expressed anger with me at her party for allowing my brother, whom I am guardian of, to have an unrestricted diet. It was all very awkward, being reprimanded by my mom in front of everyone in a public place. I told my mom we could talk about it later but at the moment we were there to have fun and celebrate her birthday.

My SIL also threw my mom a birthday party at the family cabin. It would probably be the last time she goes up to the cabin and maybe the last birthday she will be somewhat cognizant for. That in and of itself was depressing. Once again, my mom expressed anger towards me about Matt. I helped Matt make a plate of food for himself and my mom took half the food I put on his plate and threw it in the garbage. She was upset I forgot to bring his applesauce for him to take his pills. I also forgot a few other things I had no idea she wanted me to bring. She was so upset she wanted to leave.

Then last weekend arrived, the weekend my parents were set to move in. On Saturday we went up north and closed down the cabin for the season. Then my brothers and I sat down and talked for several hours about the plan going forward. What are we going to do with the house, cabin, their vehicles, finances, cleaning out the house, etc. My brother Luke said he was living off his faith to get through it. I said I was burning off my anger. It’s hard to have to grieve your parents while they are still alive, even more so because my relationship with my parents is complicated. I feel a lot of anger about how I was treated in the past and how the mess they made, we are going to have to clean up. Because of their hoarding tendencies, I think it’s going to take years to clean out the house. I hope I am wrong.

Then moving day came along. We went to my parents house to load up some of their belongings. My mom kept grabbing things to put in boxes. My SIL took them out and put them back. I decided to go outside with my mom to keep her out of their hair. My mom wanted to take a walk to her church down the road. I was the last one to walk with my mom down the only road that I could remember her living on. My mom stopped along the way to pull out weeds along the ditch. She carried them over to to a grassy area on an uneven pathway. I was afraid she might lose her step.

When we got to the church, mom wanted to walk around the cemetery and talk about people who died. I saw the gravestones of my ancestors and familiar names. My mom asked if I knew them, the graves of my great-great-grandparents. I said I did, but I didn’t really. I softly cried on the walk. My mom was always a fast walker, and I had to struggle to keep up. But this time she shuffled along and I was afraid she might not have the strength to make it all the way back.

This time my mom was kind towards me, almost childlike. I watched her say good-bye to her house, the only house I’ve ever seen her live in. The grief slipped from anger into sadness. My mom is gone now. She is leaving more and more every day.

17 thoughts

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This summer has been very busy and unfortunately I haven’t been able to set aside as much time as I would’ve liked for writing. Here is a summary of what has been happening which may or may not lead to future posts about the events.

  1. My mom’s POA was activated after a diagnosis of frontotemporal dementia.
  2. I set up a tour for my parents of an assisted living facility. They will be moving in this weekend.
  3. My brothers and I will be meeting over the weekend to make some hard decisions about what to do with my parents properties, vehicles, belongings, etc… As my parents are hoarders, this could take more than a year to straighten this mess out.
  4. I am still dealing with guardianship issues with my brother Matt in terms of his finances and health. My mom has been very angry with me that I am allowing him to have a diet with no restrictions. There will probably be more about this in a later post.
  5. Arabella broke up with her boyfriend. It was more of a mutual breakup and they left on good terms.
  6. Arabella has less than a month of probation left.
  7. Angel and Dan moved their camper from North Carolina to Indiana. They are doing great, but it’s been an adjustment this year not seeing them often.
  8. Paul had genetic testing done for cancer. On the test, 76 out of 77 screenings came back as normal. The other was neither negative or positive as they don’t have enough info to be certain if it’s a problem area or not.
  9. Our dog jumped the fence and was missing for 24 hours. We looked for him everywhere. We thought he was a goner until the following day when I came into the house to find him laying on the couch like he never left.
  10. The dog ran away right before I had to leave for work. That day I went in late. I left a message for my supervisor who didn’t bother to ask if we found our dog. I think that was the point where I started to despise my supervisor. The company I work for and the management really suck as I’ve seen them screw over the employees. This left me in a hard spot. I really like my job, the people I work with, and the patients. But is that enough for me to stay with a company I have no respect for because they don’t take care of their employees.
  11. Talking about employees, a previous problem employee of ours when we ran our company was convicted of felonies which landed her in prison.
  12. For the first time, I was called to go in for jury duty and was selected to be one of the jurors for a felony case involving the se#ual assault of a child.
  13. I decided to have three rings resized that were a gift from my mom when I was in my 20’s. It means a lot more to me now that my mom is ‘gone’.
  14. My son moved back into the house. He is doing really well as a musician, having a full-time job, and starting a business on the side. But in other ways he is not doing well. Like his dad, he struggles a lot with his drinking. At least at this point he is acknowledging it’s an issue he needs to work on.
  15. I really think that now is a good place to end my memoir. It’s been six years since I started it. I even finished it at one point, but life kept happening.
  16. The bar I made my stand up comedy debut in shut down. There are other venues I can try out though.
  17. There are so many things I probably forgot about…

The appointment, part 1

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My mom’s first appointment the day her POA was activated was rough. My mom was crying and begging me to be able to have Matt overnight at her house again. Due to two recent medication errors, Matt’s case manager, nurse, and I made the call to not allow Matt to stay at our parents house overnight anymore. He was, however, free to visit them between 8AM and 8PM between medication times. My mom told her doctor she was not allowed to see him at all. Her primary doctor said she would be willing to be the second signature on the POA form and gave me the form to take to her afternoon neurologist appointment.

The primary doctor said that we needed to look for a facility to take care of my mom. She said that we should look into everything before it became a crisis and it has been at crisis stage for too long now. I told the doctor my parents wanted to stay at home and refused to go. My mom was adamant that my dad was going to take care of her. She said he was loving and supportive, which couldn’t be farther from the truth. Her doctor said in her 25 years of being a doctor, she only saw two husbands that were able to care for their wives and they had large families nearby to help. Not children who lived far away and were working full-time. She said worst case scenario was that I needed to call adult protective services to have them removed from their home.

After the appointment, I dropped my mom off at home and drove an hour to close the guardianship account my parents created for my brother back in the 90’s. The rep payee account had finally come through and I needed to close the old account. Upon arriving at the bank, the teller contacted her manager stating that I wanted to close an account that wasn’t mine. The manager said absolutely not as I pulled out the guardianship paperwork. The manager had to speak to the higher ups as I sat waiting in the lobby for an hour. When they finally talked to me, they told me the original account from 1994 was not set up as a guardianship account. Although I am now the guardian, they might still need my parents to come in to sign off the account because it was listed as a joint account. At this point, I was feeling really stressed. I was trying to hold back anger and tears as I explained I lived an hour and a half away. My dad can’t walk and my mom is losing her mind. Along with becoming my brother’s guardian, my mom’s POA was most likely going to be activated that afternoon.

I didn’t know when I would be able to come back with my parents. I took the day off to deal with everything. There wasn’t much else I could do and I had to be back for my mom’s afternoon appointment. After I left, I received a call from the bank saying the higher ups approved the closing of the account. I turned around and finally closed the account.

I picked my mom up for her second appointment of the day. She was still upset with me about Matt and was now crying because she thought she was going to be committed. The doctor was running late. After waiting for another hour, we finally saw the doctor. I explained everything that was happening, how my mom was getting worse since the last appointment. The doctor seemed upset she didn’t schedule to see my mom sooner. She signed the POA forms on the spot. Then she dropped the bomb of frontotemporal dementia. Since my mom was still crying, she asked if my mom was still on anti-depressants. I thought so but I didn’t go to that appointment with her. She told me my mom needed memory care ASAP. She said being at home was a major safety concern, especially with cooking.

I asked the neurologist about genetic testing. She said that I could if I wanted to but it was a waste of time because this condition is something you don’t have any power or control over and there is no cure. My thoughts turned dark, I would do anything to not do this to my own children and spouse. But I would have no idea I was losing my mind. For several weeks, I fell into a deep dark despair. I am still grieving the loss of my mother who is still alive. I am grieving the future I thought I would have. Angel did say something that made me feel a lot better which was that they were planning on taking care of me anyway whether I was in a wheelchair or lost my mind.

POA

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Last week my mother’s power of attorney was activated as I surmised.

The neurologist gave my mom the diagnosis of frontotemporal dementia (FDT). We suspected that was the case, but the confirmation from the doctor hit me hard. That did explain a lot of my mother’s bizarre behaviors over the last several years, like sending my daughter a picture of her ex on her wedding day. The other symptoms I noticed were narcissism, jealousy, obsessions, hoarding, being melodramatic, and saying hurtful and rude things. These are the symptoms that started first before the memory issues and confusion started. It all makes sense to me now.

It’s hard to say where my mom ended and this horrible disease began. How much of my pain and anger towards her were for something that was not even something she has any control over. The disease has been progressing quickly over the last several months. My mom can go from hating on me to love bombing me within minutes. It’s hard to be around her for long periods of time because it’s depressing seeing this disease ravage her mind. It’s difficult to not feel frustrated and annoyed.

I have been feeling a lot of sadness and grief following the diagnosis. It’s hard to see the goodness in life right now. After doing research on the disease, I found that there is a strong genetic correlation between FTD and schizophrenia. I am not sure if my mom’s family suffered from this. When my mom was a teenager, her mother died in childbirth. After her mother’s death, my mother and her siblings fell out of contact with her mom’s side of the family. My mom outlived her mother and oldest sibling by over 25 years, so we really don’t know.

Out of the eight siblings, my mom has a younger brother and sister with similar personalities/symptoms. Her sister with similar symptoms has a daughter with schizophrenia. My brother has schizophrenia and my daughter has schizoaffective disorder. I would say my chances of getting FTD are very high. My dad’s side of the family has a high rate of dementia as well.

I asked the doctor if I should get tested. She said testing would do no good, it is something I have no control over and something that cannot be cured. I am terrified of what I could become. If there is a silver lining…or gray matter…my family can be prepared in a way we weren’t with my mom. I just don’t want them to have to live that way.

The beginning of July

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It’s been a wild ride since the last time I wrote.

I thoroughly enjoyed the holiday weekend. On Friday we enjoyed listening to a local favorite band and enjoyed the fireworks on a perfect July evening. On Saturday afternoon, my son’s band played and afterwards we invited the band over for a pool party. Today has been my first whole day I’ve spent at home for weeks and I’m enjoying getting stuff done around the house.

Work has been hectic. Last week we got a new supervisor that no one likes. She is around half my age with no education or supervisor experience. I am trying to have a good attitude about it. She pretty much just stops in and yells at everyone then leaves us alone. I’ve heard she has no family, significant other, or life outside of being ‘bossy’. I am comforted that most of the other employees feel the way I do so we will stick together if things get out of hand. She offers assistance when we have been short staffed but never is around.

The day shift and the night shift typically have two employees working together. Unfortunately, it seems as if the irresponsible employee is always paired with an ultra responsible employee. Then when the irresponsible employee calls in, the responsible employee is left with all of their work. This happened last week with a lady who only works two days a week, she called in screwing the other employee over. They were both supposed to work the holiday. The irresponsible worker called in again and the responsible worker (who is a single parent of 4 kids) who never calls in called in afterwards. In that situation, the supervisor is supposed to work. I really think it was brilliant for the responsible worker to call in because maybe something will be done about it now. It’s getting out of hand and nothing is ever done about it. I am supposed to work with both employees tomorrow so we’ll see what happens.

Things have been crazy on the home front as well. My mom screwed up my brother Matt’s medications for the second time. I had to make the tough call to not allow my brother to go home overnight on the weekends anymore. This was very upsetting to my mom. But as my brother’s guardian I had to make the right call that him going home was a safety concern. I’m taking my mom to two doctor appointments this week, her primary doctor for a physical and to the neurologist. I wouldn’t be surprised if they activate the power of attorney for her this week. This week might change the course of our lives. We’ll see how it plays out.

On a good note, my brother Matt’s rep payee went through and now I don’t have to worry about paying my brother’s bills anymore. Large expenses have to be preapproved, so that should take care of my mom making huge unnecessary purchases she wants me to reimburse her for. Now I just need to take a couple hours to close out the old account. The switchover has been difficult, but once everything is set it will be great.

Dan should be spending the next couple of weeks at home after being out of town for work since December. They wanted to send him back out again right away, but he told them he wanted to stay around for a while. Now Angel will be out of town for work this week. They are busy people. It’s been good to see them more. Dan bought a new Tesla. The car drives itself. It’s unbelievable how much technology has changed over the last 100 years. I can see a future where drunk driving might be a thing of the past. Wisconsin is usually pretty drunk, especially on weekends. But on holiday weekends, people have been partying harder than usual.

That’s about it around here. Arabella’s friend should be getting out of rehab tomorrow so we’ll see what happens with that. Good thing she is getting out after the holiday weekend. I even saw some people who were embracing total sobriety drink. Not that I’m judging. I’ve gotten beyond that in my life as drinking is such a cultural thing here.

Next weekend will be my birthday weekend. I have a few fun ideas I am planning. Nothing big. But something to look forward to when life around me is nothing but chaos.

The end of June

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How is June almost over already???

I’m just trying to keep my head above water. It’s a big adjustment going back to work full-time. My days off tend to be filled with running errands, cleaning, and checking in/doctor appointments. I am thinking my mom will be ruled incompetent soon. My dad is listed as POA and I am secondary. Either my dad will take on being POA so he can force us to let them stay at home or he will resign and it will be on me. Neither are good options.

Meanwhile, I am changing things up with my brother Matt who I am now guardian of. I switched his account over to a professional payee which will be easier in the long run but is an adjustment right now. Things are getting really messed up because my mom is still getting some of the notifications about bills and doctor appointments. Then she is making arrangements for him incorrectly that I know nothing about. It has lead to a lot of confusion all around to the point where the group home thought he was missing a couple times my mom cancelled his transportation.

At times my mom still wants and thinks she has full control over Matt. She has been very unreasonable with his care and I am going to change that. This has lead to stress on my part. I had a nightmare that because of the changes I made that he became violent again. There is a sliver of doubt in my mind. What if my mom was right? What if I do the wrong things for the right reason? It’s a lot of responsibility.

Arabella had her doctor appointment in there as well. The doctor is decreasing her dose of her anti-psychotic medication due to weight gain that didn’t get better on weight loss meds. We’ll see what happens with that.

Alex’s car broke down, so I have been giving him some rides to work when I can. He moved back into the house which I have mixed feelings about. He is incredibly moody and can be hard to live with but I love him anyway. He is more of a responsibility than help most of the time.

Angel is still in the area. Thankfully since confronting her stalker neighbor, things have gotten a lot better. There haven’t been any issues. Dan has been on the road all month and will be coming home soon. But after that, they have no idea what they will be doing which has been stressful for them.

Paul has been working a lot too. I am thankful for him. He offered to take Matt to his doctor appointment for me when I was scheduled to work. However, the doctor’s office ended up rescheduling Matt’s appointment and I picked a time when I can take him.

I think I’m going to call this the summer of responsibility. I try to catch little breaks when I can. Yesterday I had the day off and went to lunch with my friend Jen. It’s the little things that keep me going right now.

The beginning of June

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Just like that Memorial Day weekend has passed, and we are well on our way into unofficial summer. I received an incident report from the group home after Matt went back after the holiday weekend. Apparently my mom mixed up his medication. If it happens again, I may have to rethink allowing Matt to go to my parents house over the weekends.

My mom has been messing up her own medication and my dad’s too. My SIL Carla spent several days at my parents house taking my mom to doctor appointments and going through her medications and cupboards. My mom had 30 containers of expired peanut butter in her cupboard. This was shocking to Carla, but my brothers and I were not surprised since my mom has been hoarding food for a long time. Carla also found out that the pharmacy has been filling prescriptions that were discontinued by the doctor. Everything is a mess. But my parents have been adamant about not going into assisted living.

After a long stressful work week, I finally am starting to feel relaxed. We just got back from spending the night on the boat and visiting with friends. Thursday night after work, I did stand up comedy. I even talked Arabella’s boyfriend into giving it a try and he did an excellent job. Friday ended up being a hectic day unexpectedly. The day before the motor gave out on our washing machine mid-cycle. Friday morning I had to go shopping to buy a new one. Then I cleaned the house. Afterwards Angel came over for a visit so that was nice. Paul and I rarely have the opportunity to spend time with just her.

The upcoming week will be another busy one. Next weekend will be my first full weekend to work. I will miss being home with Paul on Father’s Day weekend. I also have a doctor appointment with Matt on my day off. I have a feeling it is going to be a long week. Alex’s tour with his band is over now and he will be making his way back home. Hopefully he will tell us all about it, but he probably will not.

Middle of May update

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The clock keeps on ticking and time seems to fly by. Today is Arabella’s birthday and I have the day off of work. We’re planning on getting our nails done and going out to eat.

Life has been eventful as of late. I ran into an old friend of Arabella and they reconnected which lead to a whole bunch of excitement. Let’s just say that several nights were spent drinking. Literally whole nights where I woke up in the morning and they were still up. Arabella’s friend was doling out shots the whole night and come morning she was totally wasted along with my son. Through their intoxication, they realized they were totally in love. Arabella and her boyfriend were trying to talk both of them to go to sleep and figure things out later when they were sober. I awoke to Arabella’s boyfriend yelling at Alex.

Alex could barely walk as I walked with him to his room. I’ve never seen him so drunk. He had to perform in his band later that evening. By this time I was fed up with the whole lot of them. That evening was more of the same. Arabella’s friend was flirting with much older strangers talking them into giving her cigarettes and buying her shots. Paul had enough of it and ended up confronting the girl and telling her she was no longer welcome at our house unless she got her drinking under control. She already has been cut off by her family and has an ignition interlock device on her car from drunk driving. I hope she gets some help and figures her life out.

This was the first time Paul told someone they were not welcome here due to their drinking. Believe me when I say her drinking was pretty out of control for Paul to say that being a drinker himself. We were both afraid it would jeopardize Arabella’s recovery and if she started dating Alex the relationship would be toxic to say the least. They probably would both take their drinking to new heights.

We were sad to see Arabella’s friend go. Arabella doesn’t have many friends and this girl has been a good friend to her in the past. The rest of the weekend was pretty mild compared to this. Mother’s Day was almost uneventful. Paul and I took my mom and Matt to her church. My mom and brother displayed inappropriate behavior both passing gas several times in the pew. My mom was very confused. She couldn’t seem to reason that she needed enough room for 4 people to sit. But in some ways I enjoyed going to my childhood church. One member said I look more and more like my grandma the older I get. It made me feel good to receive that compliment and to be around people that remembered family long dead.

The rest of the time with my mom was stressful and I couldn’t wait to leave. She was confused about her medication. Earlier in the week I received a call from my dad who said that she took too many pills and ran out. She gets angry and emotional easily. Her food hoarding has gotten out of control. She wanted me to reimburse her out of Matt’s account (I am now his guardian) for over $200 worth of food which included 8 bags of gluten free flour and a dozen containers of breading.

Some good things did happen so far this week. I met with my therapist who said I am in a good spot and after almost a decade said I didn’t need therapy anymore. I saw a quote recently I thought applied to this which said that as someone with Complex PTSD we don’t need to know how to survive trauma and pain. This is something we are used to dealing with skillfully. What we need is to know how to handle joy and happiness, something I never learned how to do. It really resonated with me.

Over the next couple of days, I am looking forward to spending some time with Arabella for her birthday. Alex’s band is playing outdoors this weekend. Early next week Angel and her husband will be back home for a couple weeks.