Paranoia and Blame to Caregiver- VENT

bluegreenjill

I do not have a family support group besides my husband to help me express my frustrations about taking care of my father with Alzheimer's. My father lived with us for about a year and it was the worst time of my life. I moved him into a retirement community right down the street from me and that was a huge weight lifted off my shoulders but now I feel like some of his symptoms are getting worse and every negative thought and feeling he has is taken out on me and only me. 

He goes to the VA for all of his medical appointments and I take him. Meaning I have to adjust my work schedule and business travel to be available for his appointments. On Monday I went over to see him and spend some time with him and I saw on his calendar that he had cancelled his eye appointment at the VA for Tuesday morning. I asked him how he changed the appointment and he said that the VA text him to confirm and he replied to reschedule. I immediately blocked the number from his phone because they will call me going forward. I asked him if he thought it was important to talk to me before making these decisions and he says "why, Im the one that needed a break from these appointments"! I had to try to remain calm and explain to him that I have a schedule I have to re-arrange in order to have the time to take him. He got all angry like I was scolding him.

I also ordered him a new phone because his old I-phone was due for an upgrade and having all sorts of issues. I had the phone mailed to my house and me, my husband and teenage son went over there to set it up for him. We transferred all the files to his new phone and completely wiped the old phone clean. During this, my son asked him if he wanted to keep the phone. Dad said yes but I said NO because I know he will just get confused with which phone is the new one and try to continue to use his old phone. He also needed to send the old phone back to get a credit. I told him I was taking his phone with me. At 3am that night I get a text from my Dad asking if I took his old phone. I replied and said, its 3am, I have work in the morning, please do not text me this late/early. When I got up, I text him and said, yes I took the phone, I need to send it back and he LOST HIS MIND.. He started saying that he wanted the phone and I knew he wanted to keep it and I stole it from him. He told me he couldnt sleep at all because he was so upset and bothered by his pld phone being gone. He said why would ATT want an old phone back anyways and he did not trust me in returning it. He sent me some crazy email about a person being scammed when returning their phone. I called ATT and asked them to send me the return label. I text my dad and said, the return label was sent to your email so forward it to me. He then took screenshots of the label and text them. I replied and said "So are you okay with me sending it back"? He only replied two days later saying "yes"..Im the only person that takes care of him besides my husband. My sister is across the country. I take him to all of his appointments, refill all of his medications, pay all of his bills, order his groceries and cook for him once a week. He does not see ANY of this. He sees me as this mean disrespectful person that is always out to get him. Its taking its toll on me. 

CanyonGal

I think what you are experiencing is a control issue, increasingly loss of independence, and not being able to keep up with the conversation in what is happening with the phone upgrade. 

Mom tended to go single-minded on some issues into a meltdown. The dog needed to be registered in their county and you needed to bring their shot records. The shot records were in the car. She found them but insisted she needed the dog's birth certificate. There was no birth certificate on this dog, and it wasn't a required item to register the dog, but she tore up the house looking for an imaginary birth certificate.

I had difficulty getting rid of clothing that was too large for her. She never wore the items, and we needed closet space but those were her clothes! I had to slip them away when she was out of the room.

She would cancel appointments too. When we had rehabilitation at home, she kept canceling the appointments that she lost that opportunity. You want to give them some control over their life but within reason.

We went to a land-line phone because she refused to charge the cell phone. She insisted it would start a fire.

dayn2nite2

Time to start minimizing your burden.

- Stop involving him in decisions.  He needed a new phone?  You get him one, set it up and take away the old phone with no discussion, no asking if he wants to keep it..

- He's tired of going to appointments?  Fantastic, less work for you.  Let him cancel all the appointments he wants and honestly, it's time to start minimizing the number of appointments.  Can his primary handle the bulk of what he needs?  So he doesn't get an eye exam, does he have a chronic condition that he needs it for?

- What is your legal status as far as handling his affairs?  You should be the point person for all appointments anyway.  Why is he still in the decision making realm on these?

- Stop cooking for him once a week.  Why should you cook for someone who treats you like this?  Family or not.  Does his retirement community serve meals or is it a building that happens to have a lot of seniors in it?  Maybe he needs something where meals are provided and he has a kitchenette with a fridge for snacks and small meals?

- Next time you take him to the VA, get the paperwork done that needs to be for you to be the point person and the person the doctors talk to (he can be there but you need to be involved).

- For involvement, you are the CEO and you make all the decisions about when appointments will happen, when things need to be replaced/traded in, etc.  

- Don't make an effort to spend time with him if he's mean.  Order the groceries, take him to the appointment, but don't carve time out of your already busy life to sit and chat with this person, father or not.

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bluegreenjill

I could absolutely see my Dad doing something like that with the shot records. Its like they pick just one thing to focus on and nothing else matters. 

I do have landline for him to for emergencies if he has'nt unplugged it yet!

bluegreenjill

This is the type of "tough love" I need to hear but then I feel guilty. I travel about twice a month for work and I write on his calendar when I will be out of town. He forgets and when I say Im coming over he puts this guilt trip on me by saying, oh its been SO long since Ive seen you.

My daughter had her 2nd grade performance at school in November. I didnt even ask my Dad to come. So I shared some photos on the event and then my Dad sees it and shares it with the comment "Guess I missed this"... A little passive aggressive IMO. I asked him about why he would say that and he said, well everyone was there right? I said my husband and her father were there and I explained how there were hundreds of people and he would have had mass anxiety. He also would have to walk pretty far to the parking lot. He said, but you didnt even ask me to go! I then explained how I asked him to go to my son's band performances multiple times and he always said no. 

Later that night we argues about something and I said I just feel like you use me. You only text me when you need something and all I ever do is tasks or chores for you. Then he says- This is why we dont get along and have a good relationship! I literally just walked out after that. Then at about 2am he texts me and says that the sharing on facebook was to God and not regarding me. He said he shared it to God because He is angry with God for his situation.. WHAT??

How do I become tougher and take care of myself as a priority but not let the guilt get in the way???

bluegreenjill

@Victoria2020

Its an assisted living but very independent. He has his own apartment and he comes down for two meals a day. He stays up too late and misses breakfast. 

I also have to explain that my Dad has always been stubborn and lazy. My entire life since I was 5 years old, I had to make his coffee and lunches. He absolutely glorifies in the fact that people make all he meals now. He still expects me to drive him to get cigarettes in the middle of the day when Im working. While there is a small liquor store right behind his house.

I do have POA already. The problem is he has a hard time giving up things. He wants his independence but is barely able to maintain it at this point. If I try to take over everything he will just hate me more. He already resents me. 

Wilted Daughter

Bluegreenjill,

As soon as I read the word "phone" I cringed with flashbacks of what I went through before/period after diagnoses. Losing control or the ability to understand must be hard, but even harder on the person who is trying to explain/carry out required tasks. 

Having someone with AD/D try to manage business affairs is like a toddler feeding/dressing themselves. 

I learned the hard way to stop including mom in decision making and eventually she stopped trying to control every aspect of her life, but it seems like a long time and took an emotional toll for me. 

harshedbuzz

I'll write more later. My take on this aligns pretty well with Victoria and Dayn2's thoughts.

In the meantime, I just want to share that this stage of dementia where a person is not capable of real independence but isn't so progressed into the disease that you feel the urgency to drive the bus was the worst for me. I found once I was more assertive and transparent in calling the shots, dad actually relaxed a bit and was easier to manage. YMMV.

My dad was misogynous control freak before the dementia that exacerbated these traits. When I told my mechanic Frank, who knew dad pre-dementia, that he'd been diagnosed, he let out a long low whistle and said "well, that's got to be something--Jack Buzzed with dementia". 

HB

ChicagoGal

Hello Bluegreenjill - My mom had a very tough time giving up control, but as her capabilities diminished I took over.  I learned with time not to explain what I am doing and not to try to reason with her.  It only made the two of us frustrated.  Mom also would keep on asking me to visit and would tell me that I never do - which of course was not true.  I could be there Monday and when I came the next day on Tuesday she would claim that it has been a very long time since I came to see her.  I stopped defending myself and trying to explain that I was just there the day before - but it was very hard to stop correcting her.  When I realized that she has no concept of time and often confuses me with other people it was easier to just look at her and say yes, I will come soon.  I started thinking of my mom as a seven year old, and then a three year old... and started interacting with her as if she was that age.  Difficult and sad but it made our interactions much more pleasant.

bluegreenjill

@ChicagoGal Thank you for sharing your experiences. I have learned that talking/chatting with people that are familiar with my circumstances is the best type of support I have. When I call my sister to explain an event with Dad or try to vent she never really gets it. She will tell me that she appreciates me but she does not know that almost every day I'm doing something to care for Dad. Dad texts her funny pictures and nice messages and all I get is "Did my medication come yet"..

I try to remind him when the last time I visited him was and Ill show him the calendar when Im out of town. I know I should not take things so personal but what really gets me is when he posts stuff or shares stuff online that makes it sound like Im never there. ALL of our family is in California and I am very close to his brother and sister but I dont want our family to think that he isnt being taken care of. I know I just need to get over this.

bluegreenjill

@harshedbuzz

This made me laugh- Your dad being who he was prior to the diagnosis and your friend saying "thats got to be something".. 

I think its SO similar to what my uncle said when my dad was diagnosed. He knows how absolutely lazy my father is and knew he would get as much out of people including me that he could. My Dad was a Marine and had a very regimented schedule for everything. I understand how frustrated he must feel but he also is too lazy to do anything. There are all sorts of activities at his house but he will only go if we come over and bring him down out of his apartment. There are weekly trips to the store but he wont go because he has to wait for the others to finish shopping. 

This is absolutely the worst part for me.

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harshedbuzz

bluegreenjill wrote:

@harshedbuzz

This made me laugh- Your dad being who he was prior to the diagnosis and your friend saying "thats got to be something".. 

I think its SO similar to what my uncle said when my dad was diagnosed. He knows how absolutely lazy my father is and knew he would get as much out of people including me that he could. My Dad was a Marine and had a very regimented schedule for everything. I understand how frustrated he must feel but he also is too lazy to do anything. There are all sorts of activities at his house but he will only go if we come over and bring him down out of his apartment. There are weekly trips to the store but he wont go because he has to wait for the others to finish shopping. 

This is absolutely the worst part for me.

People new to dementia often think of it in terms of memory loss. But there are also losses in executive function and personality changes fairly early on. Two things that really struck me with my dad, a former social butterfly, were the onset of inertia and apathy. He couldn't make a plan to get off the couch and he no longer gave AF about anything.

This helped me wrap my mind around his thinking.

understanding-the-dementia-experience.pdf (alzconnected.org)

harshedbuzz

BGJ-

I am sorry you are in this situation.

It sounds like your dad doesn't have the temperament to be truly independent without staff (you) by virtue of who he is intersecting with his dementia.

I feel like part of what makes this difficult for you in not fully understanding the concept of it's the disease talking as the scripts are not really new to you. This was really hard for me to, too. My dad had always been difficult so it was hard to see his behavior as a function of a damaged brain. Dad was diagnosed well into the middle stages of the disease and we started psychoactive medications to take the edge off the anxiety and depression that drove his worst behavior. It wasn't perfect, but it dialed things back enough that could redirect and validate to diffuse most of the worst he threw at us. 

One concept to understand is that you dad may have anosognosia a condition that often travels with dementia that prevents the PWD from being able to recognize that they've had a cognitive shift and are no longer as capable as they once were. 

Do you have the legal paperwork in order to make decisions for him? A durable or sprung POA for health and financial/guardianship? If not, you'll need that as well as having all the HIPAA documentation to interact with his medical team.

Dealing with the VA sounds tough-- they seem to do a lot of referrals which may no longer make sense. Does he have any health conditions that require multiple specialist appointments? Keeping in mind the Alzheimer's is a terminal illness, you might want to change how you approach his medical care around preventative screenings and the management of chronic issues. My dad had a lot of medical issues. Upon his diagnosis we revisited his medical care and jettisoned anything that didn't contribute to his comfort-- I kept his pulmo and a urologist to continue his ADT for prostate cancer (a quick appointment 2 x yearly) but ditched his cardiologist, retinal specialist, endocrinologist and allergist and let his PCP take over managing things like T2D and BP issues. You might want to take a hard look at the level of care and what is does or doesn't bring to the party. In your shoes, I might also change his contact information to your email and phone if you can pull it off.

It sounds like he is no longer appropriate for independent living. He sounds better suited to perhaps AL with an eye towards MC at some point. If he's in a CCRC, perhaps he could be moved to the next level which should reduce your "need" to provide meals. You could also investigate meals-on-wheels as an option. 

I would also put his bills on autopay to save time and headaches. 

Good luck.

HB

HollyBerry

I went through some of this with my mom and am now going through other pieces of it with my partner.

My mom had balanced her checkbook to the penny before her stroke.  It killed her to not be able to do things for herself and my brother and I had to finesse things very carefully to avoid a meltdown.  Electronic banking, bills, etc turned out to be our savior, because while she had her computer on her desk she couldn't use it, and we would tell her "this (whatever) has to be done online now, I can help you with that next time I'm here."  She wanted to see the bills and file the papers but we did most of the actual work across the room while she "supervised," and later set it up so we could do it from home when we could actually concentrate.  We tried pretty hard to maintain her dignity and some feeling of control and she was generally pretty good about letting us do things as long as she felt like she was in the loop. 

You may find assisted living will save you a TON of time, because they usually manage the meds, personal care items, housekeeping, etc. When you visit, you can actually visit - get a cup of coffee and chat, attend an activity, or just watch tv together.  They can sometimes arrange transportation to appointments so you can meet him there; I did this a few times when work was uncooperative and it was expensive but a welcome luxury to save a couple hours of time. 

Re visits - I bought a dry erase board and a calendar.  I would put a message on the dry erase "I will be here on Tuesday, January 17 after supper."  That also helped the staff when they were planning showers or other things better done when she didn't have a visitor, and also they would share the activity calendar and I would try to come when there was music or something we both enjoyed.  I will add, my mom was a little obsessive about calendars, dates, times, etc and she would check the board and the calendar (one of many) over and over so she knew her schedule, even if she had no idea what day it was.

With my partner, who is in Stage 4 of Alzheimers - the other day she said "Alzheimers only affects my memory, it doesn't make me dumb."  It was all I could do to keep my mouth shut.  She can just about use her credit card in the machine at the grocery store without prompting (most of the time) and can text her sister but gets it confused with email.  Her chief complaint in life is that she has no control over anything and I have taken over, and I make her do every thing she hates.  She says things to me that she probably said to one of her exes, years ago, that aren't actually relevant to anything in our relationship now but they pour out of her mouth as if the ex is standing here instead of me.  This morning she insisted that I yelled at her for something related to the dog, but I was downstairs folding laundry when the dog yelped and never even mentioned it.  Her tone of voice resembles a snotty 12-year-old who (in my world!) would be grounded for speaking to anyone that way - but you can't send a 73-year-old woman to her room.  

Someone here recently said they had to step back and look at all the caregiving tasks as "Mom, Inc." and consider their role CEO of Mom, Inc.  There's a point where this role takes on a life of its own that's completely different from partner, spouse, son/daughter, sibling or whatever other role you had in the past.  I haven't named this new corporation yet but I'm thinking CEO might be ok.