The doctor says this is just the beginning..

Casey8

Which, to me, seems unimaginable. My father was diagnosed with Alzheimer's 5 years ago. He is/was an extremely brilliant financial investment advisor at the very top of his game. The past six months, the loops have gotten extremely short, his paranoia is terrible and his combativeness is worse. My mother is his primary caretaker in St. Louis, MO and my sister lives close by. At this point he cannot be alone and if my mother is gone for any extended period of time, his anxiety goes through the roof. I moved out to Denver 15 years ago, received my CPA and had a successful career as a tax accountant. I quit my job last August to spend more time in St. Louis, leaving my wife for a week or longer every month to stay in my parent's house. One of my father's more prominent loops is his retirement which he believes just happened, but was 4 years ago. He has no hobbies outside of watching the ticker on CNBC and noting the stock performances. He spends his days doing that and playing online solitaire and has no other hobbies or interests, although he is quite bored and gets frustrated often because "there's nothing to do." He has always been a drinker and refuses to quit even though it's quite clear that the alcohol compounds the problem. When I go back to St. Louis, it's at this point, to just be there with my mom. She sees my dad's condition as her burden to bear. No suggestions that I have are considered. The only headway I've had is to hide the guns that were in the house. I'm back in Denver, first day back. My life is split. Trying to be present with my wife and my life here but it's a constant thought, concern, weight.. It's getting harder every time I go. My mom mentioned to my father that we might need someone to be at the house to assist and he quickly dismissed the idea. I wished she hadn't even mentioned it. Now, there's no way we'll be able to get someone to help. I'm approaching my 40th birthday and I feel completely helpless, hopeless, and lost. I'm not even sure that this is the appropriate place to put this type of information. I just thought there might be others that are in a similar boat and might have some suggestions. I'm at a loss. Any input or support would be extremely appreciated.

SusanB-dil

Welcome Casey8  -  sorry you 'have to be here'... but yes, this is the right place. I've found much information - and commiseration - here, in the short time I've joined.

Hopefully, your mom will see that assistance would be invaluable. Maybe they are not open to that at this time, but not sure why that would be completely off the table going forward. ?  I have seen others call a person as their own assistant, or that they are actually assisting the assistant (ie: giving them job, or something to do). Do be sure to take care of your own family unit.  They are not open to your suggestions, but in any case, you can only do so much.  It sounds like the stress of stretching yourself too thin is wearing on you.

Casey8

Thank you for reading and your advice. I think we could make something like that work if we said mom needed help. They live in this huge house and only utilize about 30% of it. I guess that would be an "in"

Arrowhead

Saying that this is just the beginning is probably the doctor’s way of saying things are going to get a lot worse. It appears to me that you’re doing just about all that you can considering the distance. Don’t try to do more than you’re able to because it will wear you down. Be grateful that you have a sister who lives near them. Nothing will change with your mother until she is ready to make the change. Nothing will change your father’s attitude and eventually decisions will have to be made for him. This is a very appropriate place to put this type of information because there are others that are in a similar boat and do have some suggestions. 

On a personal note, my wife was also diagnosed five years ago, we live in St. Louis, and I have a brother living in Colorado Springs.

harshedbuzz

Casey8 wrote:

Which, to me, seems unimaginable. My father was diagnosed with Alzheimer's 5 years ago.

If your dad was impaired enough, given his considerable cognitive reserve, to be diagnosed 5 years ago, you are likely well into the middle stages of the disease progression rather than "just the beginning".

Stages of Dementia Dr. Tam Cummings

He is/was an extremely brilliant financial investment advisor at the very top of his game. The past six months, the loops have gotten extremely short, his paranoia is terrible and his combativeness is worse.

Has anyone suggested a consult with a geriatric psychiatrist to discuss medication to dial back the aggression and paranoia? These are powerful emotions he may no longer have bandwidth to process effectively and it would be a kindness to dull them pharmacologically. Taking the edge off would make non-medical strategies like validation and redirection more effective.

My mother is his primary caretaker in St. Louis, MO and my sister lives close by. At this point he cannot be alone and if my mother is gone for any extended period of time, his anxiety goes through the roof.

It's not unusual for someone in the mid to latter stages to glom onto one caregiver as their "safe person". Sometimes this will including physically following them around in a behavior called "shadowing" which can be unnerving.

I moved out to Denver 15 years ago, received my CPA and had a successful career as a tax accountant. I quit my job last August to spend more time in St. Louis, leaving my wife for a week or longer every month to stay in my parent's house.

Ugh. The long distance is difficult, and with Alzheimer's being a marathon rather than a sprint, you may need to explore what your role can be without imploding your own marriage and career. This is especially true given that your mom is in charge here and she doesn't sound very receptive to making changes you suggest. 

One of my father's more prominent loops is his retirement which he believes just happened, but was 4 years ago. He has no hobbies outside of watching the ticker on CNBC and noting the stock performances. He spends his days doing that and playing online solitaire and has no other hobbies or interests, although he is quite bored and gets frustrated often because "there's nothing to do." He has always been a drinker and refuses to quit even though it's quite clear that the alcohol compounds the problem.

So much of what you describe could be my story. My parents, too, lived at a distance until I moved them closer to me. My mother was passive and deferred to the wishes of my dad's diseased and alcohol soaked brain to the exclusion of what she needed for her own well-being. TL;DR- she neglected her own health in caring for him and had her own medical crisis not long after he died landing in the hospital for a week then blowing out an optic nerve and losing the ability to drive and her independence. Dad became very apathetic and while he could still decode the written word, he couldn't hold thoughts long enough to actually read with any comprehension. Since you are a CPA, I would encourage you to- with mom's permission- do a deep dive into any accounts they have to make sure dad hasn't been scammed or done anything with their finances. My dad day-traded away $350K early in the disease process and wasted thousands on recurring purchases and random things. Dad also kind of time-traveled and would often return to the late 1970s asking after creepy clothes he'd owned, old coworkers and carrying on about prices. 

When I go back to St. Louis, it's at this point, to just be there with my mom. She sees my dad's condition as her burden to bear. No suggestions that I have are considered.

I had this with my mom too. She refused any and all suggestions that might improve quality of life for them both. Two things helped. One was getting her a psychiatrist and therapist to give her a safe place to share and process her feelings and experiences as well as meds for her depression and anxiety. The other thing was getting her into an IRL ALZ support group where her peers were able to proffer the very same suggestions I made but where she would listen and actually implement them.

The only headway I've had is to hide the guns that were in the house.


I had to get rid of guns, too. It's best if they are out of the house. Even unloaded, they could cause an issue if he found one and LE was called in an emergency. First responders won't know they aren't loaded and he could be shot. You need to rid the house of anything that could be weaponized- I took out golf clubs, cast iron pans, small tables.

 I'm back in Denver, first day back. My life is split. Trying to be present with my wife and my life here but it's a constant thought, concern, weight.. It's getting harder every time I go. My mom mentioned to my father that we might need someone to be at the house to assist and he quickly dismissed the idea. I wished she hadn't even mentioned it. Now, there's no way we'll be able to get someone to help.

To my ear, it sounds as if your mom is a bigger problem in implementing a plan than your dad. She's reasoning with a PWD and taking directions from someone whose brain is broken. When my mom was behaving in a similar manner I told her I was on the verge of taking her for an evaluation because she wasn't thinking or acting in a rational manner. Later, she made a really poor decision to let dad drive AMA and I ripped her a new one saying she could go back to her old life and leave me out of their shenanigans. I was willing to help, but I wasn't short changing my own family so she could make poor decisions. If your mom isn't listening or considering your advice, it's OK to let her go it alone.

My dad forbid outside help the first time I tried to bring it in. But the second time I told him they were to help my mom recover from TKR and that if he interfered with it, they would both go to a nursing home where she could get better. 

 I'm approaching my 40th birthday and I feel completely helpless, hopeless, and lost. I'm not even sure that this is the appropriate place to put this type of information. I just thought there might be others that are in a similar boat and might have some suggestions. I'm at a loss. Any input or support would be extremely appreciated.

This is an ideal place for you to share your thoughts and vent. I'm just sorry you need to.

HB

loveskitties

You are not alone in your situation.  My father has dementia and my mother is his caregiver.  Both are in mid-90's.

I live about 1 1/2 hrs away but it might as well be across country.  I too have had all suggestions/recommendations shot down (most times without any thought) as to what would help them both.  It took over a year of discussing to get her to even consider moving to sr. living situation, but then all she did was put a deposit down and saying she wasn't even considering a move until next year some time.

My daughter and I have given her a number of different agencies to try to get some in-home help, but mother always finds fault with something about them.

As my son keeps reminding me, as long as she is "driving the bus" we can only sit back and wait for the crisis which will eventually happen.  We do have all legal paperwork done for finances and medical, but until my mother is no longer considered competent (or she says she can't do it any more) we are stuck.

You do need to take care of your life.  That is one thing you have the ability to control with your wife.  The rest of it is frustrating and worrisome, but you can only offer your suggestions.

Wishing you the best as you sort thru this maze.

Iris L.

loveskitties wrote:

My daughter and I have given her a number of different agencies to try to get some in-home help, but mother always finds fault with something about them.

This is addressed to everyone.  Older adults even without dementia may have some degree of difficulty in the area of executing tasks and projects.  This is especially true in this era of Covid restrictions, when so much has changed and in a time when so much is computerized and the pace of everything is very fast.    It may be easier to simply find fault than to analyze various options.  

Iris

harshedbuzz

Cobbling onto what @loveskitties said about the crisis looming.

One thing I forgot to mention is the plan B. When my mom was blowing me off around getting dad a diagnosis, I had already sorted out the best diagnostic clinic near me, a good CELA and started the process of vetting facilities in the event she became too ill to provide care or died first. 

You mention a sibling; have you shared concerns with each other? Are you on the same page or is there likely to be contention between you moving forward? Have you discussed this with them?

MimiMinder

So glad you reached out to the forum. My first thought is to get all of the guns out of the house. Now. A hiding place isn't as safe as gone. My next thought would be to get a game plan in place for help in the home. Maybe you and your sister could brainstorm and come up with something that sounds plausible - old college friend down on his/her luck needs a place to stay temporarily or needs to do some odd jobs or wants to practice repices and needs to borrow a kitchen. Or someone from church needs help or possibly the housing for a new intern at the financial investment firm fell through. Or you could 'gift' them a cleaning service or a cooking service. But it sounds like your mother could use some assistance.

Does your father have any former colleagues from his firm who might come over and give your mother a break? Maybe someone could stop by with coffee and donuts and your mother could then have a bit of time to herself? Do they have any neighbors or friends who might be willing to help out? Sometimes we have to reach out for help, which can be challenging for independent folks. But this really shouldn't be your mother's burden to bear alone and the monthly trips seem to be taking a toll on you. Is your wife in a position that she could come with you sometime? Maybe not for a week plus, but could it be a long weekend sometime? She might have some great insight or ideas. Added to that, having her with you might be a huge comfort.

Turing 40 can be challenging enough, but dealing with Alz compounds the issue. I would hope you are doing lots of good things to keep yourself mentally and physically fit. The anticipatory grief we all deal with can be overwhelming and a lot of us have gotten professional help to work through the issues. 

Please take good care of yourself and give your wife an extra hug!

mharrisz

Hi Casey8,

I don't think I can offer much in the way of helpful input but, I can definitely tell you that you're not alone.  My dad was diagnosed around 7 years ago.  I'm 41, I live in California with my wife and 1.5 year old and my dad is in Michigan with my mom serving as his caretaker.  In the last year and a half or so, it's taken a notable turn for the worse; paranoia, aggression (thankfully just verbal), and spending the day either sitting in the same spot doing nothing, or pacing around looking for random things.  I'm not sure if his decline is related to isolation from the pandemic, the recent surgery to have his prostate removed, or if it's just the natural progression of the disease, but whatever the cause, it sucks to say the least.

Being an only child and living out of state, the burden has fallen almost entirely on my mom.  I feel terrible that I haven't been able to help out more.  There's guilt about living so far away and missing out on his "good" years, and also for prioritizing my wife and child over my parents.  I wish I had more to offer you besides my sympathy.  But, I do want to thank you for sharing your story.  It's helped knowing that there are other people going through very similar issues.

MH 

Paris20

Casey8, I’m sorry you’re going through what all of us on this forum know is an awful situation that only gets worse. I just want to add my point of view based on my experience as caregiver to my husband, who was diagnosed with Alzheimer’s in 2015.

You can’t look at your parents’ interactions with you in the same way you did in the past. What I mean by that is two-fold. First, your father is not able to comprehend what is happening to him so it follows that he thinks he needs no help. He does and so does your mother. I learned the hard way, winding up in the hospital, because as my husband worsened I became more enmeshed in his care, neglecting my own. Turn to agencies that can help.

We like to think we can handle anything that comes our way but it’s almost impossible to describe the scope of the damage this disease can have on a family…financial, physical and,  above all, emotional. Read as much as you can about this disease. No intellectual activities will alter the outcome. Find anything safe that your father can enjoy, whatever it is, and accept that he’ll be less and less able to appreciate what he once did. I know this sounds like a real downer but this is what you’re dealing with. I’m truly sorry.

Casey8

I appreciate your comments and it's nice to know that there are people dealing with similar issues. Even nice to know that they are close geographically.