Odd phone call from my Mom (1 Viewer)

Galileo said:

Absolutely...had to drag my father kicking and screaming through this process.  But it is incredibly important to get your "ducks in a row" if they are not already.

Click to expand...

I had to trick my dad to sign. Once he got deep enough into it, and we dragged our feet, he became very suspicious and would not sign anything. I had to wait, too long, until he didn't really know anything anymore. It caused our family a lot of pain and anguish. Get #### signed right now!!!!

Sorry my dude and best wishes and luck.

As always, we’re here for you and anyone else who going through a similar trial. 

Mrs. Rannous said:

I'm sorry to hear of the diagnosis.  Whether it's accurate or not, NOW is the time to see that someone has Power of Attorney, Medical PoA, access to safe deposit boxes, and so on.  Make sure there is an updated will.  Taking care of those things lets you focus on family knowing you have done what you can.  Good luck.

Click to expand...

This

KC, this is tough and some in your group may not want to deal with how things really are. The "recoveries" are brief and, in my experience, things hasten the other way on the backslide.

This disease runs one way, my friend. It sucks and my condolences.

Thoughts, prayers and best wishes to your dad and your family.

KC - very sorry to hear this.  Good luck to your pops.

Thank you to everyone that has offered advice and encouraging words. I think I have a pretty good understanding of vascular dementia, but will hopefully be able to attend his next drs appointment in 6 months. In the meantime, I'm going to push to get as many things documented as possible. I didn't get a chance to talk to my older brother before he went out of town. That will need to wait until next week. Afterwards I am going to talk with my mom to get a better understanding of where her mind is and what she will need from us. 

With all that, I'm trying to make a decision and would like some input. For the last 2 years, my wife and I have been working towards the goal of downsizing our house, buying a motorhome and traveling the country full time. I retired this year and my wife is planning to retire after the first of the year. One of the reasons we our doing this now, in our 50's, is that my wife has a rare eye disease that causes her to lose her vision. The longer we wait, the greater the risk that she won't be able to see the things we want to see. Our son just finished his welding degree and started a job. My daughter will finish her Masters degree in the Spring and will hopefully have a job shortly after. We just signed paperwork yesterday on a home equity line of credit in order to buy a smaller house, move, and then sell our current home. The smaller home would allow our daughter to cover the taxes/insurance costs on her own and give us a place to keep some of our stuff after downsizing. Downsizing still may happen. We've bought a few things with the idea that we are going to be living in a motorhome sometime next year. The biggest being the Jeep Liberty that can be towed behind. 

When we made the decision to travel, we discussed the possibility of one of our parents falling ill before or during that time. We both agreed that we would deal with it if it came up. My wife said that she was okay with not being around every day. When her Dad passed from lung cancer, she did 90% of everything before and after. She is going to let her sister take care of her Mom if need be. I'm the middle child. My oldest brother has been a black sheep his whole life. He's had a drug problem and hasn't talked to any of us siblings for 15 years. He's in no condition to take care of himself, much less Mom or Dad. My older brother has never had kids. He's newly divorced and lives about 25 miles away on a lake house. He's responsible to a degree, but didn't want kids because he like his independence. My sister lives in Oklahoma, is divorced and has two teenage daughters. She could move back to town to help out, but I suspect she will not in order to keep things at arms length. My younger brother was a surprise child. He's 18 years younger than me. He's not married, doesn't have any kids and has needed help getting his own house. I don't know if he's going to step up. It makes me feel like my Mom may be looking at me to be the responsible one. I've been married 30 years, raised 3 kids, never accepted a dime of help from them,  and been there to help when needed. 

My wife and I have had some conversations. She's a saint and said that she would understand if we delayed the motorhome plan. If her eyes get worse, it just wasn't meant to be. Some of this will be clarified when I talk to my brother, an more so my Mom. My thought is that I will continue to spend more time with my Dad over the next year. Depending on what happens at his next Dr appointment, I will know where he stands on the progression scale. I don't know what my Mom's plans are for care and living arrangements. Is she wanting to move into a home as soon as she no longer feels comfortable. I believe they are financially set for this, but will need to discuss. Is she looking at us to help so that they can stay in their home as long as possible? I know my Dad would say go, see the world. Send me lots of pictures. I'm also wondering if I can be a caregiver after a certain point. If there becomes a point where he no longer even knows who I am? Am I there for him, for my Mom, or for me? I also wonder if I travel in the motorhome, will he forget who I am sooner because I'm not around. 

In the end, I wonder if I'm being selfish. But, I feel like I'm bound to disappoint someone. I'm concerned that I will be looked at to fill a larger portion of the void because I'm already retired and I live 5 minutes away. 

Again, sorry for rambling. I've not slept well the last few nights and I have all these things running through my head. I'm a person that likes things to have clear answers. I can't find that answer and probably won't. 

Thanks again for listening. 

It sounds to me like your father is in the pretty early stages of the disease.  Everyone is different, but the progression can go on for several years.  The difficulty in trying to assess your mother's needs is that right now, she doesn't know what her needs will be.  Those needs are going to continually evolve and change as the disease progresses.  You may be able to do a little traveling now while he is in the early stages.  You can monitor the situation and have a plan to return when things get tougher mom.  It is a tremendous emotional, psychological and physical drain on a caregiver.  My mother does not deal with it well.  I am fortunate enough to have 4 siblings (only 3 live locally), but we have all been actively involved in trying to support my parents (and each other) through this.  It has been very demanding for all.   My father is now 88 and we have been dealing with his situation for about 3.5 years.  We have been trying to maintain living at home as long as possible, but we are quickly approaching the end of that phase.     

I was able to chat with my older brother this morning and spent a few hours at my parents house this afternoon (45 minutes of which was talking to my Mom alone)

My brother thinks he is in the early stages, but hasn't done any research into dementia on which to base that opinion. My Dad likes to hunt and has a conceal carry permit. This has been one of my biggest concerns from the moment I heard the diagnosis. My brother agrees, but is not sure how we approach the subject with him. He wants to take it slow and have one on one personal talks with my Dad. When I asked my mother about his guns, she just said she was going to wait until next year to see how he progresses. (hunting season is over for this year). 

When I asked my Mom about her plans, she said that my Dad couldn't get approved for long term health insurance because he was drinking 5 beers a night when they applied?? She has long term insurance. Said they have money set aside for something like this. But, she also said that she wants to stay in the house as long as possible and have in home care come as necessary. Once she could no longer handle it, they would look at moving to a home. 

The most concerning thing is that she said she thought he was in the early stages and that it could be 10-15 years before it becomes an issue. And, since he's going to be 80 next year, it may not be a factor. Also, she called me shortly after I left to ask that I not share his diagnosis with anyone. They aren't telling any of their friends until he shows more signs. 

While I was there, we were discussing new cell phones and plans. My Dad asked how long I've had mine? I asked "the phone or the plan?"  He just nodded and said "Yeah". I asked him again, were you asking how long I had my phone or how long I have had my plan. And again, he said "yes, that's what we want".  My Mom was sitting next to me and she wasn't sure what was going on. I explained it a third time, and then he understood and said "your phone, how long have you had your phone?".  Both my Mom and Dad use hearing aids, but I think my Mom excuses a lot of these incidents off as him not being able to hear. 

I also discussed our plans to travel and she said that she doesn't want us to change anything. Again, referring to the possibility that it could be 10 years before it becomes and issue. She did mention that my younger brother has his own things that he is dealing with and wouldn't be much help. (not sure how his problems now are certain to be his problem in 10 years). And she said that my older brother probably wouldn't be able to help much because of his job. That leaves her and I. And I don't know how she's going to be able to do this on her own if I'm 1000 miles away.

At this point, everything is on hold until the next doctors appointment. I'm going to take advantage of being retired and being 5 minutes away. As some of you may know, we home schooled our kids. I worked my vending business around their school and my wife's work schedule. I spent tons of times with my kids. I've never looked back and thought, I should have spent more time with them. That won't be the case with my Dad either. 

Tough call.

If it was me, I would still travel and route my travel to where I could get through home every month or so. You will be in a motorhome, so obviously you have a ton of flexibility.

Take them with you for a long weekend here or there.  You are a good son for being willing to postpone your dream for them. But if you dad says to go, go.

You have other family close by to help if necessary. Swing through town as part of your travel plans. Say everything you need to say to your dad now - he will appreciate it and you will be glad to say the words.

And when times get tough, you can get home. And if you can also help your wife see the things she has always wanted to see, do it for her too.

You are a good man for caring about others and their needs. Your dad and mom did a good job. 

Gotta keep living your life. Move forward with your motor home plan. They seem like they’re in a pretty good position for now and the future.

Visit when you can and keep involved with the decisions. When it’s time for them to be in a home you’ll know. As others said get POA and updated will taken care of, for Mom too.

It will be tough on your mom taking care of him so before it gets too rough move them both to a place that has a memory unit for him and she can have an apt. possibly in the same complex to visit daily.

See how the conceal carry thing goes. He may lose interest and/or feel nervous about his deteriorating skills and voluntarily give them up. Check when it needs to renew and discuss it. It would be terrible for an accident to happen so maybe “borrow” his guns and let Mom know you have them if it comes to that over time.

You’re doing great! Take care.

ChiefD said:

Tough call.

If it was me, I would still travel and route my travel to where I could get through home every month or so. You will be in a motorhome, so obviously you have a ton of flexibility.

Take them with you for a long weekend here or there.  You are a good son for being willing to postpone your dream for them. But if you dad says to go, go.

You have other family close by to help if necessary. Swing through town as part of your travel plans. Say everything you need to say to your dad now - he will appreciate it and you will be glad to say the words.

And when times get tough, you can get home. And if you can also help your wife see the things she has always wanted to see, do it for her too.

You are a good man for caring about others and their needs. Your dad and mom did a good job. 

Click to expand...

I'm not planning on being that close each month. 

Johnny Rock said:

Gotta keep living your life. Move forward with your motor home plan. They seem like they’re in a pretty good position for now and the future.

Visit when you can and keep involved with the decisions. When it’s time for them to be in a home you’ll know. As others said get POA and updated will taken care of, for Mom too.

It will be tough on your mom taking care of him so before it gets too rough move them both to a place that has a memory unit for him and she can have an apt. possibly in the same complex to visit daily.

See how the conceal carry thing goes. He may lose interest and/or feel nervous about his deteriorating skills and voluntarily give them up. Check when it needs to renew and discuss it. It would be terrible for an accident to happen so maybe “borrow” his guns and let Mom know you have them if it comes to that over time.

You’re doing great! Take care.

Click to expand...

Thanks to both for the suggestions. 

I'm having a hard time overcoming the day my Dad no longer knows who I am. I remember my aunt not remembering me because I was only seeing her a few times a year. Whereas, she remembered her kids because she saw them weekly or multiple times a week. I guess I'm being selfish to want to hold on to that for as long as I can. My Dad won't know the difference either way. For some reason, I feel like it would make him more comfortable not having some stranger giving him hugs every few months.  

Walking Boot said:

Do the motorhome thing with your wife, no doubt. Do it as soon as you can. 

Click to expand...

I'm a year out. 

Step 1 was to downsize the house so that overhead was low enough for daughter to rent next summer. After she finishes her Masters Degree

Step 2 was to buy motorhome and hit the road next fall. 

There's no way I would allow my kids in a house with guns and someone who may not have the awareness to protect them.  I think I'd talk to him alone and see if he would be willing to let them be stored at a gun range or someplace where he can't make a mistake with them.  I'm pretty sure he wouldn't want that to be his legacy.

(Part of the reason I'm saying this is because of something that happened to a friend of my in-laws.  She ended up with Alzheimer's.  She would go outside and wave a gun around because she had become paranoid and scared.  It's just not fair that her kids didn't take them away;  because she would never have wanted to hurt a neighbor, a policeman, or worst of all, a child.)

Sorry to hear about this.

For all, I put my parents on Life360 a few months ago.  They live on a 2000 acre farm now.    Nobody within a mile.   I figure if their phone stops moving, that's when I need to worry.  Sadly, I think it's a necessity for all to do this once they hit 70 or so.

KCitons said:

Vascular Dementia. The more I think about it, and hear things that my Mom and siblings have seen, the more I think he's had it for a few years.

He had a memory test 5 years ago and scored 29. His recent test put him at 21. I'm trying to understand the progression and where he falls on the scale. I think some of the family are underestimating it. (Chalking it up to old age)

My biggest concern lies with the rest of the family taking a wait and see approach at this point and the fact that my Dad (and even my Mom to a degree) are skeptical of the diagnoses. My dad even said "I feel fine" and "I still know how to get to X and back".

They gave him medicine to attempt to slow the process. But I'm not sure that does much. 

My aunt (his sister) passed away from Alzheimers about 12 years ago. If he's processing information correctly, he should recall what it was like for her. One day she was fine, the next she couldn't find her way home. I think he is either in denial about his diagnosis, or he's oblivious because of the dementia.

I'm going to talk to my older brother some more today. But I get the feeling he is downplaying this right now. Either it's his coping mechanism or he doesn't have a full understanding. Basically, wait 6 months to see what the next Dr visit reveals. Depending on when my Dad started symptoms, I dont know that there is a guarantee he will be safe during those 6 months.

Sorry. Still rambling. More questions than answers. 

Click to expand...

I'm responding to this before reading the rest of this thread.

So sorry to hear. I get the denial part. My dad's condition points to Mills Syndrome, a rarer form of neuromuscular disease. You have ALS. Then there's PLS (primary lateral sclerosis), then even rarer than that, Mills Syndrome. It effects only 1 side. Everything else has been ruled out. My dad still believes it's stroke. He has full sensation in his left limbs so that confirms it's not stroke either along with other tests. I told him once and his walking anxiety level that's always 100 hit 1000. So I quit. We decided it's not about the diagnosis but treating symptoms the best they can and quality of life. So my advice is let your dad sort of figure it out. Eventually he will. But his coping as with many of us hit with devastating news is denial. Same with other family members. My brother downright yells at me for bringing up neuromuscular disease. He refuses to believe it, especially since there is no test that says PLS or Mills Syndrome. It's a wait and see thing. His PT and friend said we aren't treating the diagnosis, we treat the person. So it's about symptom management. I agree so no more mention about the name. 

Your mom will be keeping an eye on him and hopefully not let him go out by himself, not only for his safety but maybe others. My friend's mom was driving and when she'd come back home, new dents on the car. Lots of hit and runs.

My advice dealing with a loved one with such an awful disease.. take it 1 day at a time. Have plans in place but all of you live today. Spend more time with him if you can. At Thanksgiving I wouldn't talk about it. Enjoy the time. 

Sending you and your family the energy to deal with this and ts and ps. Xxx

My Mom asked that we not tell anyone. When I told my wife that, she said "oops".  She had seen my cousin over the weekend. Her Mom was Dad's sister. The aunt that passed away from Alzheimers. My wife said when she told her about the diagnosis, her response was "I was wondering when someone was going to say that".  She see's my Dad fairly frequently as they own a small farm about 20 minutes away. My Dad hunts there and spends time helping out occasionally. (my Dad grew up on a farm before moving to Omaha in his late teens)

I know each person going through this shows different symptoms. But, something that stands out is the change in my Dad's personality over the past few months. The best way to describe it is that he has lost some of his filter or has 6 year old moments. He's always been a person that cares about others and other's feelings. Living by the motto "If you don't have anything nice to say, don't say anything at all". My wife mentioned that he mode a "scolding" comment a couple of months ago when we were there. Another example would be while I was there yesterday. We are bringing the dessert for Thanksgiving dinner. My Dad likes chocolate cream pie. So, we already have a one of those and a pumpkin pie purchased. I asked what kind of pie they wanted us to bring. My Dad's normal answer would be whatever you bring will be delicious. But yesterday he said. "chocolate cream". I just responded with "absolutely, we also have a pumpkin. Do you want anything else?"  Coming from a simple upbringing, he's always been grateful for anything he has. His comment caught me off guard. 

I agree with travel now. With dementia it can go up and down. Last October my friend's mom was on hospice, bedridden and eating pureed food. She had 2 weeks. People came from all over to say goodbye. Thanksgiving came, she's still here. By Christmas she was sitting at the dining table eating on her own. No one had ever seen such a turn around. A year later at 93 she's still at the plateau. My friend decided not to wait anymore and moved 2 hours away to be near her kids. She visits once a week and makes sure she's taken care of. No one can predict the future. We only have now. 

I agree, your wife is awesome. Things will become more difficult just from the natural aging process, so I'd take the opportunity now. 

KCitons said:

My Mom asked that we not tell anyone. When I told my wife that, she said "oops". 

Click to expand...

This made me laugh out loud.  It reminds me of the MASH episode where they have to diffuse a bomb.  Cut the red wire.  But first...