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My Fears vs Reality?
4mouseketeers
Posted: Saturday, May 30, 2020 4:31 PM
Joined: 5/24/2020
Posts: 6


Hi everyone - this is my first post here. My dad has his neuro appt this Friday, but after a hospital stay for Altered Mental State and a positive Covid test (asymptomatic) we have an MRI that shows atrophy of the brain and vascular changes. Combined with his confusion, memory issues, loss of cognitive skills, etc the doctors sent him home from the hospital with a dementia/Alzheimer's likely diagnosis.

My dad lives on his own - my mom passed from a hard cancer battle 3 years ago. They had been married 50 years. My dad is 74. I'm 47, married with a 14 and 9 yr old. He has a lady friend that we like very much and they've been dating a year. She now stays with him a good amount which is helpful, but she's not a "caretaker", she's definitely more of a girlfriend role. And I don't know how long she will be able to stay with him as he progresses - that's a lot on a fairly new relationship.

My question is this. Well - I have a thousand, but here's the main one - how do I temper my fears about what "might" happen to him, or what he "might" do, with reality? I'm so scared that he'll hit someone driving or make a bad driving decision, but I don't know that he's progressed enough to "take his keys". I'm so afraid he'll leave the stove on, but he's 74, fairly young and not so far progressed that I would tell him "no cooking". Etc. Etc. I'm afraid he'll fall, I'm afraid he'll wander. But he has not.

If I had to guess a stage I would say 3, maybe 3.5? I don't know. He is confused often, cannot process timing, planning, what week's have passed - his sense of time is way off. He forgets his wallet, his belt, etc. all the time. He's not shaving or taking care of himself like he always has. He knows the grandkids, but struggles with their names sometimes. 

He's mad that we locked up his medicines (anti-anxiety and anti-depression/sleep disorder) but he wants to mess with them and take them as he thinks is best, not what the doctor says.

He knows he has dementia, but he does not think that he is acting any different, and of course gets defensive or aggitated if we try to explain it at all. We worry about sundowners as his anger and aggitation really hit towards the evening. 

I'm sorry - long post and I'm just feeling very overwhelmed about all of this. I love my dad and I'm so close to him. My brother and I just want him safe and for him to be able to live a high quality of life without safety being an issue. Neither of us can move him in with us. He refuses to even talk about assisted living and leaving his house. His house is huge and way too much for him even before all of this.

So - at what point is it fear over the "what-if's" but he's probably ok and better than we think, or at what point do we have to begin a conversation that we know he will be so upset about and is not even willing to consider?

Oh goodness - I hope that made sense... thanks for any thoughts. I really appreciate it. I know I probably didn't give all the details I needed to, but it seemed so long as is.

 


star26
Posted: Saturday, May 30, 2020 5:14 PM
Joined: 2/6/2018
Posts: 287


Dealing with dementia isn't like other worries and fears. Your fears are justified and you should be worried and taking action on those worries now to prevent bad things from happening. Rather than him being better than you think, I bet he is worse than you think.  

 
The neuro may tell you whether it's appropriate for Dad to be driving. Unless he says no driving, you need to drive with your Dad and do your own observations. That's a subject of it's own and you can get info on this board of what to look for. You can also have a driving assessment done by an occupational therapist. This is something you'll need to regularly reassess unless he's already not safe to drive. 
 
Continue medication management. 
 
Whether you say 'no cooking' or 'no this or that' depends on if it's a safety risk. One needs to drop in unannounced and observe regularly to determine some of these things. My Dad was forgetting things on the stove and starting fires early on. 

Do what you need to do and don't factor the girlfriend into the equation at all. Assume she's not in the picture because she probably won't be for long. Exception: make sure she's not in a position to financially exploit him or turn him against family. 

If it's not already done, you need to get a durable power of attorney for finances and for healthcare, pronto. It's best if this is completed before getting a formal dementia diagnosis. Now is the time to at least start overseeing the finances to look for problems. 

Realize Dad is going to be mad about all the current and future changes. This can't stop you from keeping him safe. There are tips here on how to deal with that. Explaining the real reasons, such as his poor judgement and memory, is generally not advisable because he won't agree and it makes you the bad guy.  

This forum can be a great resource and place for support. Others will respond as well. It might take a couple days. 


zauberflote
Posted: Saturday, May 30, 2020 5:44 PM
Joined: 10/24/2018
Posts: 1077


Welcome, 4mouse! The question you ask in your next-to-last paragraph, about "at what point?"-- I have heard it said many times here-- if you are asking that question, it is already time. That will always be earlier than we would wish, too. Sadly.
harshedbuzz
Posted: Sunday, May 31, 2020 6:32 AM
Joined: 3/6/2017
Posts: 2221


4mouseketeers wrote:

Hi everyone - this is my first post here. My dad has his neuro appt this Friday, but after a hospital stay for Altered Mental State and a positive Covid test (asymptomatic) we have an MRI that shows atrophy of the brain and vascular changes. Combined with his confusion, memory issues, loss of cognitive skills, etc the doctors sent him home from the hospital with a dementia/Alzheimer's likely diagnosis.

I hope the neurologist appointment brings some clarity. Be sure to go with him and to write your questions down so you don't forget them. When I went to dad's doctor's appointments, I always positioned myself behind him facing the doctor so I could nonverbally communicate whether what dad was reporting was accurate without verbally contradicting him.

Did they come up with a reason for the altered mental state? Our path to a diagnosis for dad started with an ER visit for the same. It's not typical to get a tentative diagnosis of dementia in the hospital.

My dad lives on his own - my mom passed from a hard cancer battle 3 years ago. They had been married 50 years. My dad is 74. I'm 47, married with a 14 and 9 yr old. He has a lady friend that we like very much and they've been dating a year. She now stays with him a good amount which is helpful, but she's not a "caretaker", she's definitely more of a girlfriend role. And I don't know how long she will be able to stay with him as he progresses - that's a lot on a fairly new relationship.

The girlfriend complicates things. It's great that you like her. There are a couple of things to watch for. The first piece is that he is not the girlfriend's responsibility and resentment can build if she feels taken advantage of. It's also likely that the relationship will fade as  your dad as he becomes needier and less interesting as the disease progresses. Another is that finances can get sticky. Other posters here have had their parent taken advantage of by a romantic partner. Sometimes a boyfriend or girlfriend feels entitled to assets in return for care given. Sometimes a friend encourages the PWD to spend beyond their means on things they can both enjoy like meals out and vacations. 

My question is this. Well - I have a thousand, but here's the main one - how do I temper my fears about what "might" happen to him, or what he "might" do, with reality?

You might want to work with a therapist for a while; my mom did. Coming here is great, my IRL support group was even better. For me, knowledge is the best weapon. Understanding the disease and the stages helped me plan for what was ahead. 

One thing that was helpful for me, was spending a couple of days 24/7 with dad. I knew dad wasn't himself, but it wasn't until mom was hospitalized and I traveled to see her and stayed with dad that I got a full sense of what dad could and couldn't do. Many PWD have days or times of day when they are doing better; if you only do an afternoon visit on the weekend, you have no idea what he does the rest of the time. A dear friend's mom began to exhibit memory loss symptoms and friend decided they needed to move mom in. Before this, she saw her mom daily picking her up by 2pm and bringing her home to cook, have dinner and hang out before taking her home at 8pm. She thought she had a good sense of mom's behavior until they moved into their new house and she discovered mom was wandering the house all night.


 I'm so scared that he'll hit someone driving or make a bad driving decision, but I don't know that he's progressed enough to "take his keys". I'm so afraid he'll leave the stove on, but he's 74, fairly young and not so far progressed that I would tell him "no cooking". Etc. Etc. I'm afraid he'll fall, I'm afraid he'll wander. But he has not.

This is a question for the neurologist. Dad's said no driving and no financial decisions while he was still in the hospital; the doc looked at me as if I was a blithering idiot for having to ask. Dad's car looked as if it had been in a demolition derby; when we sold it, it had less than 6K miles on it. If his doctor won't make that call, you could get an evaluation with a specialist OT who can determine if he's still fit to drive. You can generally get a sense of his skill by driving with him- the bolded in the next paragraph are some of the reasons why PWD become unsafe to drive fairly early in the disease process. 

If he does get a dementia diagnosis, you can check with his insurance company to see if his policy will still cover him. Ours did not.
 

If I had to guess a stage I would say 3, maybe 3.5? I don't know. He is confused often, cannot process timing, planning, what week's have passed - his sense of time is way off. He forgets his wallet, his belt, etc. all the time. He's not shaving or taking care of himself like he always has. He knows the grandkids, but struggles with their names sometimes. 

He's mad that we locked up his medicines (anti-anxiety and anti-depression/sleep disorder) but he wants to mess with them and take them as he thinks is best, not what the doctor says.

The stages can give a sense of where someone is in the disease process. Generally, a person is considered to be in the latest stage for which they have any symptoms/behaviors. The neurologists tend to use a 3 stage model. 

He knows he has dementia, but he does not think that he is acting any different, and of course gets defensive or aggitated if we try to explain it at all. We worry about sundowners as his anger and aggitation really hit towards the evening. 

He likely has anosognosia- an inability to appreciate his cognitive deficits- he doesn't know what he doesn't know. Dementia is not just about memory. It's also about executive function and reasoning skills which are lost fairly early in the disease. His reality is that he is as fine as he has ever been and you will need to find work arounds to keep him safe rather than trying to have a rational discussion about why you are taking over. 

Rule one of Dementia Fight Club is that you do not try to reason with a person who has a broken "reasoner". 

I'm sorry - long post and I'm just feeling very overwhelmed about all of this. I love my dad and I'm so close to him. My brother and I just want him safe and for him to be able to live a high quality of life without safety being an issue. Neither of us can move him in with us. He refuses to even talk about assisted living and leaving his house. His house is huge and way too much for him even before all of this.

Stop talking. You and your brother need to get the documents needed to act on dad's behalf. If he has POAs a diagnosis may trigger them. If not, you may need to file for guardianship assuming he's far enough into the disease to be deemed incompetent. At that point, you and your brother would find a nice AL with MC that will accept Medicaid should he outlive his assets and pull the trigger. 

So - at what point is it fear over the "what-if's" but he's probably ok and better than we think, or at what point do we have to begin a conversation that we know he will be so upset about and is not even willing to consider?

TBH, unless you are living with a PWD, you are probably seeing the tip of the iceberg. Have the conversation with the doctor and with your brother. 

Oh goodness - I hope that made sense... thanks for any thoughts. I really appreciate it. I know I probably didn't give all the details I needed to, but it seemed so long as is.

 



jfkoc
Posted: Sunday, May 31, 2020 12:26 PM
Joined: 12/4/2011
Posts: 18499


I would agree that your father is probably less able than you think. 

In the name of fear take care of what you able able to....legal/medical issues....now.

Learn all you can about the care of someone who is compromised for your sake as well as his. It is no different than needing how to be in charge of caring for someone with another illness. You have to learn and you can.

We are here for education as well as support and there is an encyclcopedia of info online and sooo many books. 


Army_Vet60
Posted: Sunday, May 31, 2020 1:23 PM
Joined: 6/21/2019
Posts: 714


4mousketeers,

Here's a chart of the 7 stages of Alzheimer's.

This is a general roadmap to how the disease works. The symptoms don't always appear that order, but they will appear.

Reviewing it will give you a good idea of which stage your father is around.

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

 

 


4mouseketeers
Posted: Sunday, June 7, 2020 7:26 PM
Joined: 5/24/2020
Posts: 6


Just wanted to say thank you so much for your replies. They were very helpful.