[Cog]

I'm posting this in hopes it will help others who may face this situation. If you have any questions you can ask them here or by pm if you prefer. I posted this originally on another forum back in March 2015. My father's Alzheimer's has made a rapid progression since then and he is in the end of life state.

March 2015

My father (age 90) started showing the classical signs of dementia about two years ago. He lived on our family farm with his second wife. His initial symptoms were short term memory loss which is not at all uncommon as we age. These later progressed into behavioral changes. Rage, making foolish decisions, and generally having difficulty making day to day decisions. We as a family explored the issue at this point about being appointed his guardian, but he refused it and there was no clear and present danger to himself or others.

About a year ago, these behavioral changes manifested themselves into threatening to kill himself, then threatening to kill himself and his wife. Once the police were involved at this level, I was able to remove the guns from the house. I was subjected to a lot of abuse by my father for this action and I really hated doing this. I love the Second Amendment. My sister and I talked to him repeatedly about moving into an assisted care place but he always refused this.

After his threats to kill his wife, she moved back in with her daughter that lives in Memphis. This left my father alone on the farm. Then begins a different sort of behavior. He starts stalking women. Now most of these women would simply give him the brush-off or call us and tell us his behavior was not welcomed. Then he would move on to the next one. His last one took out a restraining order on him and then things begin to get interesting.

My father promptly violated the restraining order, told the police he had no intention of stopping visiting her, and they arrested him. At that point, my sister was made temporary guardian by the court with the thought this would be permanent. My father was placed in a nursing home which specialized in the care of Alzheimer's patients.

The legal process from this point is a painful one. The elderly have rights. The guardian ad litem(court appointed) explained his rights not to have a legal guardian and my father demanded a trial by jury. This typically never happens but the elderly have this right for very good reason. As temporary guardians you end up in a weird situation. You end up paying for his attorney fighting the guardianship and for your attorney in obtaining it. To be more specific, as temporary guardians we used my father's money to pay for both. Perfectly legal. My father is not rich by some standards but very well off.

Anyway, while my father was in an Alzheimer's wing, the attorneys on both sides are busy racking up chargeable time and preparing their cases. Court dates are delayed several times. Everyone is stressed. My father, who I visit regularly has no concept of why he is even asking for a trial. All he knows and understands, which is typical of people with Alzheimer's, is that he wants to go home.


Ok the big day arrives, the jury is picked. I'm sitting outside the court room with my father and he asks me why we are at the court house. He has no memory of him invoking his right to trial or anything leading up to why he is there. Very sad.

Moments before we are getting ready to start the trial, his attorney comes over and says we aren't having a trial. Your father has agreed to you and your sister being his guardian. A small meeting with the judge, attorneys, and us two prospective guardians ensues. My father sits in utter confusion but does say the words the judge wants to hear. Everyone sitting in the room can see my father can't function on his own but the legal process must be observed.

Very stressful time for all involved. Now begins my work as guardian. He is in an excellent facility close to home. His finances and taxes will be sorted out and unscrewed and he has enough money to keep him there until he dies.

Being a legal guardian means that every action you take from thereon must be solely for the person you are guardian for. Whether it be finances or his care, that can be your only consideration. The court monitors that you aren't looting the treasury, so to speak, and doing so involves serious prison time.

[Cog]

I've learned a bit about dementia when dealing with my father. I hope these tips will assist you when you have to deal with it.

1) Embrace their reality and don't waste time trying to correct them into your reality. You will only make them angry or more fearful than they already are. If I got on here and accused one of you of robbing a bank, you would deny it since you know you didn't do it. Now, if I continued to insist that you did the deed, you would get pissed off at me. This is how their world works. They honestly have no idea of what you are talking about when you try to correct them back to your reality. Waste of time for you and just makes them more afraid.

2) Use short sentences that address their reality. If you use more than two sentences, they will lose track of what you are talking about and it confuses them. If they ask you if they can go home, tell them perhaps later or when the weather is nicer. A person with dementia remembers what home is. It may be the home they just left or they might be thinking about the home they grew up in as a child.

3) Stay calm even if they are verbally abusive to you. In their reality you might be a stranger who steals from them, responsible for them being in a strange place, etc. Reassure them that they are in control and safe. And that you care about them. Hug them. I'm not a hugger but I have learned how to be.

4) If they are fixated on a certain thing and it is upsetting them, change the subject back to something that they are comfortable in their long term memories. Things they did growing up, favorite car, whatever you know they found pleasant in the past.

5) Every dementia person is unique. Some have moments of clarity, some have rapid declines, and some more gradual.

[Cog]

So here I am a year later dealing with and trying to understand my father's disease. The deal with dementia is that every single person with it is unique. With some it is early onset in their early 60's, or later in life, with some its a very gradual process, with some its very aggressive and ends a person's life very quickly. With my father it has been a very aggressive disease with stair steps down instead of a gradual diminishment of capabilities.

But usually it goes like this:

Loss of short term memory
Behavior changes
Difficulty with walking
Difficulty with communication
Delusional thinking
Difficulty in swallowing
Incontinence

With my father, he has stair stepped down. Loss of ability to walk, incontinence, can not swallow solid food. All within a year. Since my father started aspirating food instead of swallowing it that led to aspiration pneumonia. Which led to 3 day stays in the hospital with the usual regime of antibiotics to cure it. On the advice of a hospice MD, the nursing home doctor, and his personal doctor, he won't be going back to the hospital again.

At this point he can't swallow food, his lungs are filling with fluid since he can't cough out saliva like a normal person can. In a semi-coma right now. Hospice is providing pain relief. He might recover from this. Sometimes dementia patients do that very thing. But we know that eventually he won't. His directives are no feeding tubes, no IV's, and do not resuscitate. If you haven't set up end of life directives you really need to do so. In my father's case, we can do this as guardians. Set up medical power of attorney with your parents if you can. It will help stop endless trips to a hospital if there is no hope for recovery.

I know this topic is depressing. But my wish is you at least think about such things in advance so you can deal with your parents and if you are getting older remove some of the pain and burden from your own kids by making your wishes known now.

[Tanada]

Cog my deepest sympathies, my father passed in 2012 at the age of 85 so they were born near the same time. In my case it was my fathers companion who developed Alzheimer but I was fortunate that her daughter was able to move in as a care giver. Towards the end of her life she forgot who I was and would sometimes confuse me with long lost relatives from her youth, and yes hugging was what made her feel safe and cared for like nothing else. My father passed from a coronary event about a year before his companion so he never experienced the very end, but he was sad to see her fade so quickly from sharp witted to almost vegetative. She was only in her mid 70's when it started and it took about 4 years to end.

[Timo]

Points all taken with deepest humility, Cog. My sympathies and admiration for your efforts and duties on your father's behalf. Alzheimer's is never enjoyable to witness under any circumstances. My mother's brother had Alzheimer's Disease, and died quite young, early 60s, i believe. My own mother died from complications of Parkinson's when she was 69. My father's brother also has Parkinson's. As for myself, being the survivor of a traumatic brain injury, i'm 7x more likely to come down with both Alzheimer's and Parkinson's, and not just because both are in my family's genes. So far, i have fun with this potential outcome in my life by consistently reminding my wife that if/when i do come down with dementia, my normal character and behavior is so obtuse that she'll probably never recognize that anything is fundamentally different about me.

All that said, the legal system with regards to persons with any kinds of mental illness, be it dementia, or schizophrenia, or bi-polar, or even something as common as depression, is seriously FUBAR! Those people who write the laws, and those people who are in charge of enforcing our laws for the most part do not have the first-hand experience of dealing with the subject of those laws. They do not have any first-hand experience in dealing with, or caring for someone who has lost their abilities to think and function independently. Laws were written for people like you and me, presumably sane and rational people who can understand the laws, and right from wrong. Unfortunately, our brain and mental capacities are subject to decay, yet the laws rarely take such scenarios into account.

I can't really offer any suggestions for your plight, other than to urge you to keep doing what you're doing. Nothing is easy, but you are better for accepting your responsibilities for your father's care.

[careinke]

Cog,

Having recently gone through the same trials with my departed mother, I feel for you. You seem to be up to the task, hang in there, it does end.

I think your first point is the most important when dealing with dementia, and is worth mentioning again:

1) Embrace their reality and don't waste time trying to correct them into your reality. You will only make them angry or more fearful than they already are. If I got on here and accused one of you of robbing a bank, you would deny it since you know you didn't do it. Now, if I continued to insist that you did the deed, you would get pissed off at me. This is how their world works. They honestly have no idea of what you are talking about when you try to correct them back to your reality. Waste of time for you and just makes them more afraid.

So many people when dealing with dementia seem so obsessed with trying to "correct" their loved one. Let it go, and enjoy what little time you have left with them.

I was bedside with both my dad and mom when they died (20 years apart). I don't know if you have observed death up close. If you haven't, be prepared in knowing sometimes it is not a peaceful process. Convulsions are common, the nurse can give him something to help. The best thing you can do is hold their hand while they leave.

If you are religious, you can think of it as the birthing process to another plane. If not, you can still take comfort knowing you were standing with him at his final moments.

I applaud you for these posts, hopefully they will help others when they are faced with this.

Thanks,
Cliff

[Cog]

I want to thank you guys and gals for your kind comments. The main purpose of me making this thread was to offer my help up to any of you going through this or anticipating going through it. I am at peace and acceptance of it all now.

If any of you want to communicate privately I can offer you what I know and can point you in the right direction if I don't know. We have many disagreements on the board, about a whole host of issues, but in this thing we can help each other get through the rough patch of what dementia does to those we love.

[Ibon]

Hi Cog,

I am in south carolina at the moment with my 90 year old dad. He has dementia but not Alzheimers. He can only walk a few stops before losing his breath but still insists on going for walks, small steps at a time. Our parents, our elders, deserve to exit with dignity and deserve their children being there and giving something back from all they gave. He took me on fishing and hunting trips starting when I was 6 years old, he opened up my eyes to nature's timeless wisdom. He is fading now, but what he shared lives on. My brother did most of the hard work caring for my dad while I have been in Panama. You seem to have had the role with your dad that my brother has assumed. Very very honorable.

[Cog]

My father passed on this morning. His ashes will be scattered on the farm that has been in our family for over 150 years. I think he would have liked that.

[WildRose]

My deepest sympathies, Cog, to you and your family. How fitting that your father's ashes will be a part of the family farm.

My mom-in-law is in the advanced stages of Alzheimer's now; I will share some of that later.

Wishing you peace.

[careinke]

Cog, my sympathies, It's always hard to lose ones parent.

[Timo]

Carry on, Cog. You did good, and i'm sure you made your father proud.

[Ibon]

My sympathies Cog. Sadness and relief I am sure. Tonight has been a rough one for my dad, he is on oxygen and helpless and does not want me to leave the room until he falls asleep. These final chapters are not easy.

[jedrider]

Isn't it better to kill oneself once alzheimer's sets in?

I remember reading about this woman journalist independent person who left herself instructions on how to kill herself that even a demented person could follow.

If I succumb to a mental illness before the world falls apart, I wouldn't want to burden my kids with looking after me. I think I would arrange for some inexpensive help as long as possible.

[Cog]

I guess I would make the case that if you live long enough you will be a burden to someone even if you don't have Alzheimer's. Arthritis, heart disease, diabetes, etc can all be issues that require help from others to live out your senior years.

I do not want to leave the impression that the various forms of dementia are pleasant. They clearly are not. But every person is unique in this respect. Some people with dementia are only mildly impaired with it and die of something else before they get to the end stages of dementia.

Just a short story of my father's last year and half in the dementia wing of a nursing home. My father was a notorious flirt, with the nurses and with the other dementia female patients. He would insist on being clean shaven, hair combed, and he used cologne. From time to time, when I visited him, he would introduce me to his new "wife". Occasionally another woman would wheel herself to our table and there would be an argument between the ladies about who was my father's wife. This sounds rather disturbing at first but instead of disagreeing with my father, I learned to just go with it.

Now this may seem to be a sad thing at first, but my father was enjoying himself immensely. Most likely in his mind, he was a teenager again dating girls. I do not know if that is exactly what we call quality of life or not. I couldn't see inside his head. But to the extent possible, I tried to let him live out this world he had created in his head and didn't correct him back to my reality.

[Subjectivist]

My father passed on this morning. His ashes will be scattered on the farm that has been in our family for over 150 years. I think he would have liked that.

My sympathies Cog, losing family is always rough.

[Timo]

I guess I would make the case that if you live long enough you will be a burden to someone even if you don't have Alzheimer's. Arthritis, heart disease, diabetes, etc can all be issues that require help from others to live out your senior years.

I do not want to leave the impression that the various forms of dementia are pleasant. They clearly are not. But every person is unique in this respect. Some people with dementia are only mildly impaired with it and die of something else before they get to the end stages of dementia.

Just a short story of my father's last year and half in the dementia wing of a nursing home. My father was a notorious flirt, with the nurses and with the other dementia female patients. He would insist on being clean shaven, hair combed, and he used cologne. From time to time, when I visited him, he would introduce me to his new "wife". Occasionally another woman would wheel herself to our table and there would be an argument between the ladies about who was my father's wife. This sounds rather disturbing at first but instead of disagreeing with my father, I learned to just go with it.

Now this may seem to be a sad thing at first, but my father was enjoying himself immensely. Most likely in his mind, he was a teenager again dating girls. I do not know if that is exactly what we call quality of life or not. I couldn't see inside his head. But to the extent possible, I tried to let him live out this world he had created in his head and didn't correct him back to my reality.

Exactly right, Cog. There is no prescription for dying at the end of our lives. Everyone has to figure that out on their own.

My mother went into a coma three days before she died. That was long enough to gather the entire family to be at her beside for her final two days. When she took her last breath, it was a relief - to her, and to her husband, and to all of her children, all of us there with her until the end. Death was inevitable, and her suffering ceased.

[Cog]

As I have donned my executor hat, instead of my guardianship hat, there will be some drama coming up with some of my relatives. As my lawyer has explained, nothing brings out the worst in people than an estate settlement. In this case, I will be selling my father's farm to a farmer and not to my nephew. The farmer's bid was higher, he wants to buy it as is, and with no inspection contingencies. But I know I am going to get some crap about it.

The deal is as executor, your goal is to maximize the assets of the estate and not let family desires/ heartburn affect your decisions. Legally, I don't have to accept any offer, from anyone.

I'm trying to ignore the fact that my nephew couldn't possibly get the financing for this deal. I'm going with the farmer, who has the money, and has pursued the property for months now.

[Plantagenet]

As I have donned my executor hat, instead of my guardianship hat, there will be some drama coming up with some of my relatives. As my lawyer has explained, nothing brings out the worst in people than an estate settlement. In this case, I will be selling my father's farm to a farmer and not to my nephew. The farmer's bid was higher, he wants to buy it as is, and with no inspection contingencies. But I know I am going to get some crap about it.

The deal is as executor, your goal is to maximize the assets of the estate and not let family desires/ heartburn affect your decisions.

We had an elderly relative die a few years and the executor felt her goal was to maximize her own share of the inheritance. The executor wound up diverting hundreds of thousands of dollars from the estate into her own pocket.

-------------------------

You've got a tough job ahead of you there, Cog. Good luck!

[Cog]

I've heard of situations like that Plant. You can spend many years in jail for using that position to put money in your pocket. I know it happens but it is despicable. This is why I have an attorney to assist me. I might not make the relatives happy but I'll stay out of jail.

On a side note, at least in Illinois, the precedence of paying bills is the funeral home first. Even before taxes, inheritors, and health care costs. They must have a hell of a lobby to get that into the statutes.