Alzheimers support

[kmw1954]

Hello everyone. My situation is this, I have an older brother that is alone in that he has no spouse or children, just myself and one younger brother locally to care for him. He is just starting to show early onset with confusion and forgetfulness. He has made me the executor and power of Attorney for his estate and medical care.

Anyone with advice and direction feel free to comment. I have never had to deal with this before and have no idea as to what to expect.

Kevin

[Wayne Smith]

First get him to a neurologist and get him on meds if he isn't. The medication only slows the process, does not reverse or stop it. The hope is that the medication slows the process enough that he dies of other causes before the dementia becomes debilitating.

Secondly, every family tries to do too much. There has been a book, put out and renewed yearly by John Hopkins Press, called The 36 Hour Day. The basic message of the book is that there is no such thing as a 36 hour day, but that is what is needed to care for the demented. It takes a team. The book then describes how to establish that team.

Third, there is probably in your area one or more companies who provide home care. Investigate them. You will need to use one of them, find the best.

Fourth, find an Elder Lawyer and get some legal advice with/for him now while his is still competent. There will come a time when he will not be competent. You will then have to act for him.

Fifth, this is a degenerative, fatal disease. That means that it is all downhill from here. He may have good days but that does not mean that he is getting better, he won't.

Sixth, there will come a time when the family and home care can no longer care for him safely/adequately. This often happens when the patient becomes combative. Now you need to be looking for a care home - placement, usually secure if he is a wanderer, and good ones are few and far between. Again, do your homework now so that when the time comes - perhaps years in the future, but it will come, when you have to make that decision it is all but already made.

You and your brother need to begin doing the research for putting together a care team and handling medical and legal issues. Establish those things now so that, a) they already know you when the need is immediate and b) for your education now.

The above is a beginning. If you have specific questions don't hesitate to PM me. I am a Licensed Clinical Psychologist.

[docbrown]

Wayne, solid advice. The more you prep now while your brother still has his faculties the better for everyone. The last thing you want down the road is to be second guessing yourself. Find out what HE wants (sad to say, including end of life decisions) now, and you will have a measure of peace of mind when the time comes.

It cannot be stressed enough to seek medical assistance NOW. As was mentioned, there are medications that can slow the progress of the disease and the sooner he starts on them, the more time you will have with your brother.

My heart goes out to you and your family as this is a terrible disease. I have watched my father-in-law, grandmother and a close friend go down this road. My thoughts and prayers for you and yours to have wisdom and strength in the days ahead.

[jcren]

The above is sound advise. He will decline, it does not get better or easier and it will be harder on you and loved ones that the person with the disease. My father has Alzheimer's and he has bad days and good days. He won't remember the bad days or hateful/inappropriate things that are said or happen, but those around will.
God bless and protect your family. You are not alone.
Joe

[rockrat]

My Sister has Alzheimers and doesn't know anyone anymore. Tried to get her to the doctor, but she refused. After a few years, she went and was diagnosed but refused to accept it and refused to take the meds prescribed for her. Saying everyone had the problem, not her. At least we got a Power of Attorney and medical power of attorney while she knew what was going on. Its been 5 years now since I noticed things were not right. Awful disease.

[oldscool]

I call BS on meds to help. Been through this twice with both parents, and the try this or that pill is a farce. Yes you can turn your loved one into a vegetable, but what kind of life is that?

This disease is terrible for all involved, and there is NO CURE or or anything that helps to alleviate as of now.

The shrinks can shove DSM-5 up it!

BTW I am not a lawyer or a shrink, just someone who has been through this. Beware of sending your brother to a facility for "evaluation". That was the beginning of the end for my Mother.........

[kmw1954]

Thank you all. Tonight I was able to talk with my brother and I got him to agree to set up an apt for both of us with his family Dr.. I need to meet him and to make him aware who I am and that I have POA for my brother. I just want to know the Dr. and where he is and how to contact him and also to find out what he knows about my brothers current condition.

We are also still talking about how we are going to deal with all his guns. I feel we need to do that sooner than later.

[facetious]

"Fourth, find an Elder Lawyer and get some legal advice with/for him now while his is still competent. There will come a time when he will not be competent. You will then have to act for him."

THIS IS IMPORTANT!!!! After my dad died I found my self taking care of my mom who had it for nine years. My sister lived in another state and had a kid who was a paraplegic so she had her hands full also. She knew a lawayer and got things set up for us. One of the first thing he told us was that this was to protect us as much as to help her. And I can tell you it was the hardest time of my life. My wife had been hurt and was going through her thing too so I ended up as the care giver for both of them and am still caring for my wife, I end up doing about 80% of every thing now.

The one thing I remember was after my mom died and I had every thing done that had to be done, was the day I got up and ended up just sitting all day becouse I didn't know what to do. It had been so long sence I had a day that somthing didn't have to be done. It was like I had to learn how to live all over.

Take my advice and say yes every time someone ask's you if thy can help with any thing. Take all the help you can get. By the time it was getting to the end of her time it felt like every last part of my soul had been sucked out of me and all I wanted was to fall off the face of the earth. It has been 15 years that she has been gone yet it seem's like maybe five at the most .

[Petander]

Yep,listen to Wayne.

I've been in a "Team" for five years, my Father In Law already went but Mother In Law is still here.

Last week she had a dinner with The Queen, won a singing contest and took a cruise to Sweden.

[facetious]

One more thing. When you are having good day's , enjoy the he** out of them. Thy are the things you want to remember, the rest you will try to forget.

And like Petander said, there will be stories that you could never have made up and at some point you have to try and give up and just go along with them and let them take you on a trip to their world.

[Handloader109]

I'll agree with oldschool. There are really NO meds that truly reduce the inevitable outcome and they only sedate the patient.
I was with Baxter Healthcare when they were researching a blood plasma protein based 'cure'. Totally failed to do anything for the patients, placebo was just as good.
Do get him to dr. as meds might really be necessary later if he becomes combative. And the other advice is solid.

[MrWolf]

Lot of great advise. Went through it with my Mom. My Father paid a lot of penance in caring for her. Was not easy. It really hurts when they don't know who you are but you are all they have. Don't be afraid to ask for help. It was stated previously that basically a 36 hour day. Prayers sent and good luck. You are being smart early in the process.

[Wayne Smith]

Medication called Cholinesterase inhibitors work in the early stages of Alzheimer's and may only work for one or two years and do not work for everyone. These limitations are well known and the research is in the early stages. Glutamate is a neurotransmitter that is excessive in those with Alzheimer's and a different medication blocks the release of glutamate. Again, limited life and does not work for everyone.

You never know if a medication will work for you until you try. If it does you are ahead, if it doesn't you are no worse typically than you were before. Thus it is worth giving them a try. There are no other 'alternate pharmacologic' materials that work at this time. Research is ongoing all the time.

[phonejack]

My father had Alzheimer's. I couldn't tell if the meds were any help. Your patience will be tested again and again.

[frogleg]

This may sound odd Now. But Try to keep your sense of Humor. My wife and I went through this with her Mother, She lived with us as long as possible but finally had to have professional care, and Now when we look back, we remember the funny things she did and said.

[popper]

Understand your situation, mom was in a memory care unit for 3 years. Several there were Az, some just stroke and some dementia. Lots of meds but the crew were very good for caring. Find a lawyer that specializes in these cases, watch out for state institutions and Medicare. There are many elder care advisers, find a good one that tracks facilities and problems. Tough road for sure.

[kmw1954]

Today we met with his family Dr. and did an exam and we discussed a few other issues in regards to his general health and went over his records to see who they have listed as Power and about advance directives. The Dr. did then order a visit to a team of neurologist that specialize in Alzheimer's and we can proceed with them.

So part of this is not just him but the mounting strain I'm feeling this week from sisters that are 1000mi away. They think they are helping but all they are doing is adding on.

[Parson]

As a pastor I have had to council a number of families facing these issues, experienced it first hand with my father. While every case is different to some degree, there is one thing I say to every family confronted with these many decisions, I tell them “I can guarantee you that ten years from now you will wish you had done some things differently but you comfort yourself by saying “I made the best decisions I could with the information I had at the time”

[Wayne Smith]

If your sisters are reasonable people ... then feed them as much specific information as you can. We all fill in the blanks of what we know with the information already in our minds - we call them assumptions - and the more accurate information they have, no matter how difficult, the fewer assumptions they will make. Most specifically share with them the uncertainties and lack of specific knowledge as well as facts. Let them know your struggles as well as your decisions. You are on the cutting edge of medical research. There is a lot more that we don't know than what we do.

If they are not reasonable people then you literally have to ignore them - and that is hard. Of course, if they are not reasonable people you probably have not paid a lot of attention to them for years.

You get the best advice you can from the experts available to you and make the best decisions given your situation and the advice you have that you can. There will always be more than one was to skin a cat. Military officers are trained not to overrule the man on the ground without very good reason. You are the man on the ground and your sisters are far away and operating from limited information and false assumptions. Keep this perspective in mind when talking to them. If they are not willing to listen there is no point in communicating. Further, if they are not willing to listen their assumptions will be further and further from current fact as time goes on, and the less and less valid their concerns are.

You have to operate from current and ever changing situations and facts. As long as your brother retains some competency things are likely to go smoothly. As this changes you will see how willing they are to listen to and adjust to the changing situation. This will then advise you in your willingness to be involved in listening to their 'advice'.

Realize I am describing a process of years, not months. You will have time to think about this, to listen to them carefully, and to judge what to do as time goes on. This is not a time for abrupt judgments but rather a time for attempts to educate them to the real situation and see if they will listen and adjust.

If they do listen and adjust and educate themslves they can become effective members of the treatement team even at a long distance.

[Wis Tom]

My father passed this summer, as my wife and I, have taken care of him since 2006. Without my wife, I would not have been able to do this, and even, as a team, we were tired, always. I totally get the post, that after he was gone, you just sit, wondering, what to do. It will overtake your own life, and anyone that is there to help. I loved my father, and honored him, to the end, living in our home, but my wife and I, are learning, all over, to live together, a new life. All the work, the endless hours, the complete lack of sleep, the never leaving him alone, so never going anywhere together, has my wife, and I, starting over. I will pray for you, for strength, as it is hard now, and it never gets easier, until their journey, is done. Get as many people as you can, involved, as there is no thing, as too much help. Stay strong, and when somebody tells you, that they will take over, even for an hour, or 5 hours, take it, as you will need every break, that you can get, as you start losing yourself, if you can understand what that means. Take care.