Has anyone here dealt with family with dementia

[Oregonhunter5]

Just curious as a my dad is in the beginning stages. Or most likely far into it. We have never talked to him about it since he's a man. A proud man. Super successful man, that's the definition of driven. But life is what it is. It's humbling. Anyways any tips of thoughts would love to hear. My siblings and I are all not speaking. Well my sister and I are, but we have nothing to do with our brothers. And that makes these things harder. My mom is taking the brunt of it of course. Real hard for her. He's only 78. Played D1 football. But the illness is deep in his family. I know I'm headed for it. Cause I've had over 20 concussions due to football and accidents.

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[41mag]

I had several older family members afflicted with Alzheimers.

There are phases and each becomes more difficult. I don't believe the condition is as hard on the one so afflicted as those around trying to support them.

Of course proper medical exam/diagnosis is fundamental. And having all legal issues firmly in hand via 'durable power of attorney' is essential. 'Conservator' or 'estate manager' by whatever term will be additionally stressed as multiple siblings all have typically differing notions of what proper medical management is, while not being willing to participate in any responsibility of decision making or day to day needs of the patient.

Whether siblings talk to each other or not eventually the outcome stresses everyone.
There are support groups out there I've been told. This process of debilitation is not unique and not rare. Good luck in developing your own action plan. Research will assist finding your choices. Don't overlook consult with attorney on estate management issues to be determined. Getting certain papers signed while he is still relatively intact will be beneficial.

 

[3MTA3]

Just curious as a my dad is in the beginning stages. Or most likely far into it. We have never talked to him about it since he's a man. A proud man. Super successful man, that's the definition of driven. But life is what it is. It's humbling. Anyways any tips of thoughts would love to hear. My siblings and I are all not speaking. Well my sister and I are, but we have nothing to do with our brothers. And that makes these things harder. My mom is taking the brunt of it of course. Real hard for her. He's only 78. Played D1 football. But the illness is deep in his family. I know I'm headed for it. Cause I've had over 20 concussions due to football and accidents.

Where to start... My Dad's dementia started as the result of a major stroke over ten years ago. He had surgery and miraculously recovered to nearly 100%. My wife and I moved in to help out, then when it looked like things were better we moved out. Several months later signs of dementia came back, much due to a common complication of strokes - the inability of the brain to regulate sodium levels. Add to the fact than Mom and Dad were in their 80's we moved back in ultimately giving care to them for the rest of their lives.

It's incredibly difficult at times for caregivers, but ultimately you will not regret any of it and at the end of the day you will know that you did everything you could do for your parents. Your Mom needs your support perhaps more than your Dad. It is likely that he is her "rock" and signs of his inability to to provide that security will be very unsettling to her combined with the extra work that includes over time having to be alert 100% of the time as to what he is doing and if he is rational.

At times you will need to take over and become the parent when your Mom is overwhelmed and decisions have to be made. I can't tell you how difficult it is to take that step the first time.

Right now anything you can do to help your Mom with daily business like help cleaning the house, shopping, meals, and most of all just being there to give her a break. It's also essential because you want to spend as much time with your Dad while he is still mostly or even partially there. It's difficult. You will be tested likely more than you have been previously. You will grow and you will be grateful later that you did everything you could.

 

[AMT]

Not to be ugly but if the family is "fighting" now, just wait, it will get worse. I also hate to say it, make sure your parents "affairs" are in order. (ie: ensure that a reasonably intelligent (and trustworthy) family member is given the LEGAL authority to make decisions. Get some sort of paperwork done NOW. Guaranteed, if you and your sister are having issues with your brothers now, it will be MUCH WORSE later, and that is something that you don't need to add to your things to deal with.)

As mentioned, your mom will more than likely focus on your dad. Or start to "shut down" (teetering on depression?) because of the situation. Both your mom and dad are going to need you there, and you'll need to remain strong.

Remember, your dad will do things that may seem normal to him. (ie: going out to get the mail in his underwear (if your lucky, he'll put on underwear). Don't get angry/upset/fed-up. Always remember, he's not going to be himself and you'll need to be patient with him.

Good luck and stay strong!

 

[BigBull 301]

You and your sis need to take your mom to an elder care attorney. They will hep you with a plan for both parents and the estate. I would start looking for quality care services near your parents home, eventually it may come down to that depending on his condition. Being a full-time care giver to your family member is a daunting task that will break the strongest.

We had both of my in-laws eventually had issues. They were 180 miles away and their two kids that lived in the same town ignored them. We moved them here, into a care facility that had a dementia unit. They were GREAT! We visited daily before they both passed.

 

[Joe13]

Only heard the stories from my dad about my grandpa as I could not afford to be in TX much but it seemed like a huge task.

Others have fairly well summed up what I heard.

The only thing I will add is if he is not on a strict routine, then start that sooner then later. He may forget who he is talking to or what about but a schedule might stick and at least give the simblance of normalcy.

Also, stretch his brain a bit when he is up for it - puzzles, cards, dominos etc may help.

Best of Luck and my and my family's well wishes for all to go well.


BTW - I don't talk with my siblings so my parents passing will be a real b***ch on top of the normal drama

 

[41mag]

OP:
not to <thread drift> too much, in my own parents case, it was simply amazing what their passing did to stimulate sudden emergence from those parental 'inlaws/outlaws/exlaws' of their life & times, who managed to ignore/avoid/conflict with them in the decades prior to their descent into final illness. A couple that I hadn't seen in over 20 years even tried to mount legal claim to estate property as well.

If you are truly a 'prepper', be advised to gird yourself in all realms emotional/financial/legal/relational relating to your upcoming family changes.

 

[ikemay]

My father-in-law developed Alzheimer's disease. It was slow at first. We would talk a little about it. I would ask him if he still enjoyed movies and books, he said not so much because he couldn't remember the plot or characters very well. I asked if he still enjoyed baseball games that we watched together. He said he did because even though he couldn't track the game that well, he still liked the at-bats, pitching, and defense on a play by play basis.

I know it was frustrating for him because he knew he was forgetting things and couldn't do anything about it. I let him ask the same questions and/or make the same comments over and over without pointing out that he had already said those things. I simply responded to him every time like it was brand new. When we did projects together I would say something like "Do you have a wrench set?" He would invariably say yes. Knowing he would forget as soon as he turned around, I would walk with him to the garage, knowing he had already forgotten. When we'd get there I'd say something like ..... hey, where do you keep your wrenches? He always knew where they were. Then he'd ask what I needed them for. I'd tell him we might as well fix the garden fountain since we were thinking about it, he would agree and off we'd go.

Anyway, I guess my point is, be patient.


He passed 1 1/2 years ago. My wife (his daughter) and I were at his side when he took his last breath. I dearly miss my friend of 30 years.

1) While your dad is still able to make decisions on his own ........ get all his affairs in order. This includes finding a care facility now, not waiting. At least look into them and get your name on a waiting list.
2) Ask all your questions now while he is still able to answer them.
3) If you have something to say to him, do it now.
4) Keep a routine.
5) Be patient with him.
6) As strange as this might sound, be yourself around him. If you told each other jokes, continue to do so. If you talked about work, continue to do so. If he had certain things he liked to do or talk about, do them.

I mean, those are the basics. His condition might take months or many years to fully debilitate him. Take advantage of him still knowing your name.

As far as you developing Alzheimer's because of your past concussions, that should not be considered a foregone conclusion. It's simply a definite maybe. One worry at a time.

Best of luck.

 

[41mag]

One of my own heartbreaking moments was taking Dad down to 'his bank'. The rural area where we had moved 40 years before still had traces of the old corn field down at the intersection with the main road, where he had driven past daily all those year.

He looked around, lost, stating "I don't know where I am". At a minimum, he had passed that way at least 12,000 times in those decades. It seemed like he was momentarily suddenly aware that not all was as it had been in his life.

Later a few miles away, getting out of his pickup, he was unable to release the seat belt. Meeting with his bank manager, of virtually lifelong acquaintance, further demonstrated how rapidly his dwindling was progressing.

Patience, yes.....patience. That is a welcome tool for the task.

 

[etrain16]

My FIL is in early stage as well, thankfully not progressing rapidly, but it's there. His mother had it, her mother before her - it runs in the family, which means I may have to deal with it with my wife some day. I never met his mother, but my MIL tells me it was pretty bad with her for a time.

As others have said, patience is key. You will be tempted to get angry. You will get frustrated. And it's hard, at times, not to think they're doing this on purpose - and everyone, no matter how well centered, can lose that perspective. I am in awe at the patience my MIL shows to him, because at times she is really tested. But she stands by him. We help where we can, but she hates to leave him, even with us, because she doesn't want to make anyone else deal with it.

My prayers for your family and that your father's life will be as peaceful as is possible.

 

[Oregonhunter5]

You all are very sweet natured. Thanks for the thoughtfulness and pointers. The estate is all done since that was his career. They also have very insurance you can buy including long term care.
Really it's the waiting game. He doesn't want to admit, and we don't want to admit either really. My dad and I battled most our lives. Sucks now. Both are guilty. But for peace of mind I will take the blame. I kinda tired of losing the older generation.

 

[Oregonhunter5]

TWo more thoughts.
1. Its kinda scary how many on this site had a story to share. The disease is that wide sweeping.

2. I feel people with guns are more sensitive to the spirit above and have genuine care in them. Which is the complete opposite of the lying story tellers....

 

[3MTA3]

TWo more thoughts.
1. Its kinda scary how many on this site had a story to share. The disease is that wide sweeping.

2. I feel people with guns are more sensitive to the spirit above and have genuine care in them. Which is the complete opposite of the lying story tellers....

I think the reason we see so much more dementia is because people are living long enough for the symptoms to occur. It may be an unintended consequence of improved overall health and longer lifespans



As I explained on another forum I had two major surgeries in my 50's, both to cure conditions that were only detectable by modern equipment (CAT). Had I lived in earlier times it's likely I'd have passed away before either had been detected and cured.

 

[41mag]

OP:
disagree about 'waiting game'.....with a little reflection, this period can well become 'filled in' and all those places in the coloring book neither have dared ventured before you can now freely go....within the lines, or without the lines....you can use whatever crayola you choose to make the next picture whatever you want. Those old unsolvable conflicts dissolve before your next turn of the page in 'the New Coloring Book'.....

 

[clearconscience]

Really sorry to hear that man. I don't have much of a relationship with my family, but I can't imagine how hard that must be.

 

[CoastRange57]

The wife and I have our estate set up so that none of the kids will be executor or have anything to do with distribution of assets. I hope to hell I can spend every last dime we have and then croak the next day. A local lawyer will handle the process, and personal things are being noted as to who gets what, with tape and a name on it now.

I will not have our kids hating each other in their 40's and 50's over what will probably be not much of an estate. My wife and her two sisters and brother have not spoken to each other in 4 years since their mother died. The sister who was the executor worked it pretty good for her benefit and pretty much hosed everybody else. This happened in their parents so it seems to run in families. We hope to break the cycle with our kids.

Dementia runs in my family and hopefully I can retain enough sanity and ability to have a fishing or hiking accident before I get that bad.

 

[JRuby]

I told my wife that if I had dementia set in that it would not be my problem. She looked me in eyes and said that it would not be her problem for long. Ain't love grand.

On the serious side my dad has a stage of dementia he is forgetting how to get home when he goes somewhere and is selling off his guns. It saddens me greatly to see the lion slowly dieing. He has given up on hunting something he truly loved. He turned 80 this last April.

 

[L84Cabo]

My mom passed 3.5 years ago after a five year battle with Alzheimers. She was 75 when she died which is young for Alzheimers. I'm very sorry you and your family are going through this. It's an evil, vile disease that I wouldn't wish on my worst enemy. I'll tell you some things I learned through this and I'm happy to answer any questions if I can.

In no particular order...

• I encourage everyone to have a discussion with their loved ones about their wants and wishes should they come down with a debilitating disease. It isn't a pleasant topic but it needs to be done as you may not be able to once it happens. This goes for making sure you have both a trust and will in place. A good trust package will also include things like a Power of Attorney, a Durable Power of Attorney for Healthcare, Hippa forms, any appropriate Do Not Resuscitate directives (DNR), etc. These things are invaluable if and when they're needed.

• Usually a diagnosis of Alzheimers starts with a family GP. But once that's been done get the person in to the best Neurologist you can find as soon as possible. Neurologists are the experts in the area of dementia and can confirm the diagnosis and plot an appropriate plan to manage the disease. While Alzheimer's is not curable, there are some medications that can help slow it's progress so you don't want to delay this assessment. I personally also believe it's beneficial to build a strong relationship with your neurologist. Knowing the history and the rate of progression can be invaluable as the disease progresses, so find a good doctor and stick with him.

• This disease takes an enormous amount out of the supporting family members. There is an enormous amount of stress and emotion with this disease but also a very large amount of work...even if your loved one is in a facility. The more family members or help you have, the better. I understand family dynamics can be complex. However if there ever was a time to come together and burry the hatchet on past issues, it would be now. I realize this may not be possible.

• With regards to the family members/care givers...I can't stress enough how important it is for you to make sure you're taking care of yourselves. And particularly your mom if she's the one handling the brunt of things. It's very easy for caregivers to neglect themselves physically and mentally and/or develop deep depression as the disease progresses. Do not hesitate to seek out qualified counseling to help deal with the mental and emotional aspects of this. You may even want to do some sessions with the whole family.

• The issue or dilemma of how to care for the Alzheimers patient can be very challenging. Specifically, is the family going to care for him at home or put him in a facility. Obviously there can be a lot of stress, emotions, and even guilt around this decision. After having been through this, I am very much of the opinion that after a certain point (after the early stages), moving the patient to a good facility is in everyone's best interest and particularly the patient's (finances permitting of course). First and foremost there is an enormous amount of work taking care of an Alzheimers patient. The amount of work is well beyond what a single working adult is capable of supporting. And I'd say well beyond what an elderly spouse is capable of supporting. But aside from the work, there is a very large mental stimulation component that is critical. Keeping an Alzheimers patient mentally active and engaged can really help slow the progression of the disease. And this can usually be done much better in a good facility than it can at home. A good facility will have lots of activities throughout the day as well as critical interaction with the staff and other patients. This just can't usually be achieved at home.

• Finances - It is probably too late for this but it may helps someone else. Assisted living and Alzheimer's care is enormously expensive. When my mom came down with it and we were looking for a facility, the cheapest place we found was $3200/month. But it wasn't a place that you would want your loved one. The facility we settled on was $6200/mo and it was by no means "high end". When she passed away five years later, the cost had risen to $9000/mo. This was just for the facility which included room, board, and care. Things like meds, toiletries, incidentals, etc. were obviously extra. The killer here is that nothing pays for this except Long Term Care Insurance. Regular medical insurance and medicare won't cover assisted living. Medicaid will cover some but it usually won't kick in until you exhaust all of the person's assets. And it's probably not going pay for the type of place that you would actually want your loved one in. I can't stress enough to people to look into Long Term Care insurance if you've got an aging parent and especially if you believe they are susceptible to a disease like this (i.e. if it runs int he family)

• I'm probably stating the obvious but if there is anything that you want to say to your father, you should do it sooner rather than later. Hopefully you guys have a good relationship. But if not, swallow whatever pride needs to be swallowed and say what needs to be said. Spend as much time with him as you are able. Beyond that just do the best that you can and know that it's enough.

I wish you and your family strength and peace as this progresses.

 

[teflon6string]

From experience - be present and be patient. Love the person, hate the disease.

 

[GOG]

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