Dealing with Altzheimers

[Fosgate]

Hoping someone out there can help me with tips of coping with this disease. My father just made it to the age of 73 which is a record in his family. However, the family curse is rearing it's ugly head. While both his parents died of Cancer, his 3 sisters and brother have all contracted Alzheimer in the end of their life.

I was once over at some relatives when one of my aunts and her husband came to visit. She walked into the room all surprised to see me and we had a short conversation. She walked out of the room and came back in and the scene repeated. As I had the same conversation no one flinched and waited for the conversation to pass. She did not survive much longer as all the siblings went within a couple years of showing obvious symptoms.

After moving back I immediately noticed the change and how my step mother is trying to side skirt it. I found out when my step sister ran her to the emergency room the day I got home and asked me to go pickup my father because she didn't trust him. I'm thinking my father has always been a great driver and the only guy I know of that has done a 180 without stopping at 60mph on a gravel road in a '65 GTO? (Guy in the backseat crying afterward and another confirmed it). What? I was dumbfounded and then I discovered he has been showing signs of Alzheimers as my step sister cuts his hair shorter than normal because he does not always remember to shower. I confronted my step mother after the emergency had passed. We had a family gathering and she still would not admit it saying he had a bunch of mini strokes that have slowed him down to where he shuffles his feet as the reason why the remodeled the entire upstairs to include wood floors so he doesn't catch his feet on carpet etc.

I notice there are days he is really on top of things and he is very easy to interact with. Then there are days when he is aggressive and you can see things are not clicking upstairs like he cannot focus. At these times he talks to us like we are kids again and is pretty unbearable to be around. My step mother has asked us to spend more time with him to help give her a little relief as well, which we do. I found though that she is also restricting him in fear of his well being from doing household chores and other activities. By doing this I see him wasting away physically and he is finding it harder to walk simply because he is not up and about as much. Tried taking him to a retirement community where they have a membership but due to a mishap with my step mother and a treadmill that resulted in pretty bad injuries, he refuses to go.

The scary part is I talked to many of their friends and they all say my father constantly talks about dying and how he has survived the longest and doesn't expect to be around much longer. This is what disturbs me the most, not just a high suicide rate for senior citizens but I can hardly believe these words come out of my fathers mouth but I have heard them myself. Are there any tips out there from people who have lived through this that they can share?

[Scroats]

Only to hang on, it sucks hard-core. Sorry man, it's a real terrible disease.

[JohnS]

Fos,

I went through this in my late teens/ early twenties with my grandfather. It is a terrible disease, honestly I would prefer cancer and having my mental facilities than this. What is worse is the impact on the immediate family, there is a lot of denial for quite some time as people go through loss and grief at different stages.

What I feel is important is for immediate family members to try to come to some consensus for care for your father as the condition deteriotes him. Believe it or not, what he is saying right now and how he is acting is not as critical, my grandfather also had these retrospective, agressive episodes, they will pass.

Mate, I feel for you. Remember, try to get consensus about care with close relatives without all involved been overly emotional. This is a difficult process.

all the best,

John.

[Hunter1974]

I know how it feels my grandfather had that dreadful disease.the hardest thing about it . Was the day the man who practically raised me asked me who are you . It sucks . All I can say is be strong , pray and I'll pray for you . Wish I had more advice my friend. Good luck and God bless .

[Vortigan]

I wish I could offer you something more but solidarity and understanding I have.My brother (biologically my half brother) died at age 45 from the early onset version,his mother having passed away with the same thing.The two years ago his daughter,my niece,who was only a few months older than me,succumbed to it also,at 44.

It is,without a doubt,a cruel and vicious disease and I am truly sorry to hear that it has visited your family in this way.With just a cursory search online and in local phone books and press etc I'm sure you'll be able to find lots of local and national support and people that you can turn to for practical and emotional support.My thoughts are with you.

http://www.alz.org/

[MIKA27]

So saddened to read the news about your father.

I have no idea about what advice to give because I honestly don't believe there is a magic method in dealing with this disease.

It is hardest on those who must take care of a loved one who is suffering with this disease, I do know that much because not only are you looking after that loved one watching them change in front of your eyes, but the changes in mood also is quite alarming.

My wife works in a High Care facility that deal with returned service men and women both past and current generations. A lot of the elderly she deals with suffer from this disease and she often tells me startling stories about how this affects everyone in the family.

I guess, be there for your father when you can, comfort him, love him, comfort those around you, your step mother and sister as they seem from what I read, to be caring and kind. Be there for each other.

Most importantly, if YOU are suffering through this, please speak to someone about your feelings, yes, grown guys often shy from doing this and this is what makes US STUPID because we think we are above that. Well, you're not. Speak to friends, family or seek some counselling which may help you. You already have reached out on this forum and that is a great start.

Lastly, please take this as a heads up to perhaps check yourself out. Reading your story where you note cancer and Altzheimers in the family is maybe some insight to look into your own health. While you're young, the suffering of your family before you may end up being their legacy to provide YOU a way of avoiding this and or at the very least, slow down the progression to not suffer in your later years.

I wish I could part with some better ideas but again, this is a most terrible disease and one which has no cure. Not for the sufferer and not for their loved ones who are going through this ordeal.

[wabashcr]

I'm sorry to hear of this. I had a grandmother and a grandfather who both had Alzheimer's. It's devastating.

The only thing I can say that may (or may not) be of any solace, is that at least they can't see themselves the same way you can see them. While early on they may certainly be cognizant of the fact that something is wrong, by and large they don't seem to grasp what's going on with the disease. It's heartbreaking for the family and loved ones, but I don't think there's a lot of suffering involved.

Both of my grandparents lived 5-6 years after the symptoms became obvious, and neither ever had any real physical issues until the end. There are little mental games and puzzles you can play with them that some researchers believe to slow the progression. Looking at photos they recognize helps, too. Plenty of good info out there.

Savor your time with your father. In the early stages you should still have plenty of good time to share. That's how I like to remember my grandparents, not the shell of themselves they both became. I wish you all the best.

[topdiesel]

It is a terrible disease. It runs in my family on both sides and it just seems to get tougher to deal with. The hardest part for me is watching someone that you respect (slowly or quickly depending on the person) disappear before your eyes. There is no advice that I have other than to cherish the moments that you have, be as patient as possible, and tell them how much you love them and the things that they have done to or for you that you are thankful for.

https://www.youtube.com/watch?v=0NzwbFQUsQ0

This is a link to a touching video.

[oliverdst]

be strong.

[Fuzz AI]

One word. Patience.

Though your dad may get angry for no reason you can see, forget things, repeat himself constantly, and then suddenly appear to be perfectly normal, be patient with him. He has no control over what he is now going through, and it will only get harder on you and your family as the disease progresses.

I found that talking with my grand uncle about old times and doing the little things he used to enjoy when he was more mobile, brought a lot of happiness to him in his final years.

[Dozerhead]

I'm sorry to hear about your father. As others have said, it's a terrible disease. One that takes a heavy toll on the family and loved ones that are close by because those afflicted will require 24 hour supervision.. It takes a lot of time and energy to properly care for someone with this disease. It sounds like your family is doing a really good job of making the house safer for him. They are to be commended for that. Sadly, not everyone with this disease has such supportive family members.

[mash]

Sorry to hear what you're going through. My dad died of dementia, and I deal with this a lot in my work life. If I could offer any suggestions they would be:

1) Talk to your dad. Ask him how he's doing, what he notices, what kind of help if any he thinks he needs, how he's getting along with his wife, what are his wishes for care down the road, what if any suicidal thoughts he's had. You may get a lot of this on a good day, but it is really important and it's a limited time opportunity. If you have any sibs of your own, you may want to get them to help you out with this.

2) I don't want know what your relationship is like with your step mother, but her reaction is actually pretty typical. Keep in touch with her and tell her what you're seeing. Recommend she talk to the Alzheimer's Society. They are a great resource for caregivers. You may find this helpful as well.

3) Knowledge is power. There are great online resources, and also some good literature from the Alzheimer's Society. There is a good book called "The 36 Hour Day".

4) From what your stepmother is saying, this may not be a pure Alzheimer's Dementia. Often dementias have a mixed component of Alzheimer's and cerebrovascular disease (the "mini strokes" and dragging his feet). Has your dad seen his GP? Does he know what's going on? If your stepmother is hiding it from you, she may be hiding it from the doctor. Even if your dad sees his doctor, he may be going on good days. If the doctor doesn't ask the right questions, he may miss the diagnosis.

5) Following up on this, it is important that if your dad has other medical conditions (hypertension, diabetes, afib) that they be controlled.

6) Avoid arguing with your dad. Pick your battles. He may not be able to remember, reason, express himself well, show good judgment etc. This is part of the disease. Bob Marley used to say "Once a man, twice a child". He wasn't far off.

7) Take care of yourself. This may be a marathon, not a sprint. This can be very frustrating, much more so with a blended family. Don't give up your friends, family, leisure etc.

Good luck with this.

[mash]

Sorry, forgot one thing. There are 2 classes of medications that we use to try and slow the progress of dementia. They are not wonder drugs, and they don't alter the ultimate course of the disease, but they can buy time. Something to consider.

[forgop]

I've seen many patients with this horrible disease. It strips those with the disease of their identity and places a huge strain on the family if they take in the family member. Sorry about the news.

[El Presidente]

Heartbreaking Fos. I feel for you mate.

[Zigatoh]

Sorry to hear this, sounds rough.

Not sure if this is what you were asking but there may be ways to help with the symptoms, odd to raise on this forum but it might be worth looking into nicotine therapy (so not smoking but patches/sprays/gum) as there has been more recent research that shows that nicotine can relieve the symptoms of illnesses like alzheimer's due to it behaving like acetylcholine in the brain - I also have anecdotal evidence from a friend who went through this with his father 15-20 years ago, he actually persuaded his father to re-start smoking as he was generally more lucid when smoking - lesser of two evils I guess.

There is also a group of drugs called Racetams I believe that again can help with symptoms by promoting uptake of acetylcholine in the brain, I think the most prescribed and researched is Piracetam, though there are stronger drugs I don't think they have the same level of testing such as Phenylpiracetam. It is also generally recommended to make sure they are combined with a source of Choline in the diet, so either supplemental or through diet (eggs for instance).

Might be worth speaking to a GP about anyway, and apologies if this isn't the kind of information you were asking about.

And good luck with this.

Martin

[Quahetas]

I am so sorry you have to deal with this. I am going through this with my mother as we speak. She is late stage 6 early 7. The most important thing I have learned so far is to always have patience. Her mood and behavior have changed drastically, but I realize it is not her fault. I answer questions and fulfill requests as if it were the 1st time and not the 10th time today. She has slowly forgotten so many loved ones, even me at times. I remind myself daily that although she will eventually forget who I am, I will never forget who she is.

[Perla]

So sorry to hear from your father.

As many other mentioned above. - be patience - with your father, your stepmother/ -sister and more important with you.

This way is really a though way and you will learn very very much.

What to do to help your father? May it sounds silly but most of our parents are drinking to less. Try to encourage him to drink more it helps quite a lot (and it is not so important what it is as long as it is liquid and yes nothing against a good Bourbon or a ice cold beer), it helps (a bit)

Alzheimer patients are often depressed and its hard to cheer them up. What you could do is give him back his own control. Meaning your father is not allowed to drive the car any longer from your stepmother side (that's okay - no offend). On the other hand you described him as a good driver. Probably he is suffering of this insufficiency - to help him out put a car key into his trousers. This could do him good and he has the feeling to have control over his life (what he don't have) and more important he has not the feeling of having ripped off his balls (you might laugh but don't underestimate this).

If he is upset - cuddle him, this will calm him down (may be a hard lesson for your tough guys but give it a try - a friend of mine did this with his father and at least both enjoyed it very much)

If he is frightened - do it like you did with your kids when they had there monsters under the bed

And what also is possible old hidden memories will pop up. Be his travel companion.

Last thing is treat yourself good. You will need your time out and oasis.

[ogus]

pm sent

[mash]

Sorry, but I have to comment on one thing that was said above re: giving your dad a car key to hold onto.

One of the toughest issues to deal with in dementia is restricting driving. The person has no insight into their cognitive problems and is desperate to drive. I have had patients use a hacksaw to cut off a steering wheel club that the family put on the car. If your dad is upset that he can't drive, get every reminder of his car away. Move the car if you can. Every time he sees anything related to the car he will relive his anger and want to get behind the wheel. Giving him a car key will reinforce his lack of control and increase his frustration. Out of sight may not necessarily mean out of mind but it's the best option.

[Perla]

Sorry, but I have to comment on one thing that was said above re: giving your dad a car key to hold onto.

One of the toughest issues to deal with in dementia is restricting driving. The person has no insight into their cognitive problems and is desperate to drive. I have had patients use a hacksaw to cut off a steering wheel club that the family put on the car. If your dad is upset that he can't drive, get every reminder of his car away. Move the car if you can. Every time he sees anything related to the car he will relive his anger and want to get behind the wheel. Giving him a car key will reinforce his lack of control and increase his frustration. Out of sight may not necessarily mean out of mind but it's the best option.

Sorry my bad - language mistake.

Did not mean that Fosgate father should be able drive - that's far too dangerous and it does not help in any case.

What I mean was that Fosgate father should have in his trouser pocket a car key dummy. Something what is like a real car key but does not fit into any car lock. Sorry for the misunderstanding.

[mash]

Sorry my bad - language mistake.

Did not mean that Fosgate father should be able drive - that's far too dangerous and it does not help in any case.

What I mean was that Fosgate father should have in his trouser pocket a car key dummy. Something what is like a real car key but does not fit into any car lock. Sorry for the misunderstanding.

It wasn't a language mistake. What I'm saying is that if driving is an issue he should not have anything that resembles a car key or reminds him of his car. He may not be able to distinguish a fake key from a real one, and every time he sees it, it will bring up the issue of driving and cause frustration and problems.

[Fosgate]

Thanks for all the advise and support. I have to say we have been somewhat prepared for this over the years of watching his siblings and his best friend growing up get hit with it. We went up to a retirement home twice about a year ago to visit his old friend who has both Alzheimers and Parkinsons. We waited our turn to visit sitting just outside the cafeteria while everyone was sitting in total silence, many not knowing what's going on around them. My father had that freaked out look and said to me on the way home not to put him in a place like that. Also about 15 years back I worked at my families dealership in Gillette Wyoming and my uncle would drive over from Spearfish South Dakota to get his oil changed, go out to lunch with my cousin and I and then head back to Spearfish. One day he forgot to pull off and wound up in Billings Montana. After that his kids sold his car and he didn't drive anymore. About the same time my father bought a long term care insurance policy so we have him covered for care.

I think many of the things said here are right. I think his balls have been snipped in a way and doesn't feel much purpose. Last night I called my step mother and suggested I give her a day off to do whatever and I will take him over to "supervise" me and a couple friends he has not seen for awhile, build a fence. She said that was fine so I called him and I heard him perk right up. I was going to drive out to his house and pick him up which is the opposite way we need to go. Today he called me and said he's driving and I'm betting he shows up with tools also. He has always loved doing these neighbor projects and I think it will be good for him. I really think we have to keep the thought juices flowing and activities to do. I remember when we took my uncles car away he fell out of his routines and lost motivation. He went quick after that and others noted to that it seemed like he gave up.

I can't imagine how terrified my father is after seeing all his siblings hit with this. It's got to be like you know a demon you know is coming for you and waiting for the day you realize he is standing right next to you. Again, thank you for all the kind words.

[bossman3]

I had to jump in. My Grandmother had this disease. I took care of her along with my mom until she passed back in 1990. Love ,patience and caring for yourself is a big plus. It hurts ,its disappointing but if you believe ,pray. Stay strong and help the family understand. Its none of anyone's fault. The person didnt ask for their life to end up this way. So love them ALL THE WAY TO THE END....praying for you all.

[CanuckSARTech]

Fos, that's a crappy situation bud. Best wishes for you and your family as you move onwards.

My wife and I have done the civvy search-and-rescue thing for a number of years - probably about half of the various SAR call-outs that we've done over the years has been for Alzheimer's / dementia walk-aways. As such, we've done lots of specialized training with this, and I might have a few tidbits to help, also with my wife being a registered-nurse, and some of this patient-care being within her specialties / unit abilities....

1. As others have said - patience is one of the biggest things. Don't forget - it's not your Dad's fault, nor your fault, nor any family member's fault. It's just....what is.

2. Don't be afraid...nay, ENSURE you use....outside help. You and/or your family may want to do everything, to keep everything within the family, in house. Use OUTSIDE resources. Otherwise you WILL burn out. A family can't do everything - the emotional burden is too much. Using outside help does NOT mean that it makes you or any of your family members less loving of your Dad, or less "worthy" so to speak. Actually, using outside help can frequently be better for your Dad even, and allows the family breathing room too. Similar to using a babysitter or daycare for your children doesn't make you any less of a loving parent, neither does using outside help make you any less loving of a family to your Dad.

3. If your father grew up with another language than English as his primary language (ie - if he was Ukrainian, and emmigrated to the US in his grade-school years, and learned English then), he will revert to using his primary language again, and will likely be unable to speak in his adoptive tongue. If that's the case, prepare your family for that, and try to ensure someone can speak the old language.

4. Remember, it's all a form of dementia - Alzheimer's itself cannot be 100% positively identified until after death, with an autopsy on the brain. There's many forms of dementia - as such, some things with your Dad may be textbook, but be prepared that many may not.

5. If there's not a care home nearby that you or your family and/or your Dad wish to use (and even if there is), ENSURE you look at tracking/finding technologies - even with care homes, walkaways are an issue. Here, we have "Project Lifesaver" - http://www.projectlifesaver.org/ - see if you have this, or another similar service, in your area. DO NOT think of this as "dog tracking", as many unfortunately do. There WILL be a point when wandering will come into play. No one deserves to die, exposed to the elements, alone and afraid, because family members were too proud to put a simple radio-transmission-beacon watch onto a loved one. GET THIS, even if your Dad doesn't want it. As much as a pacemaker is critical to extending time with a loved one, this is another useful medical tool.

6. With most forms of dementia / Alzheimer's, sometimes the person reverts back to earlier thinking / memories. If there is a wander, for us in our area, they frequently will track on a south-to-southwest bearing (they're "following the sun", so to speak, in it's movement). They see the actual sun, but can be walking through the middle of a corn field, and believe that they're actually at the county fair when they were 16, literally visualizing all this, going to meet a new boy-/girlfriend, similar in theory to a movie flashback. The sun may trigger these older, happy memories. I mention this, as it can be disturbing for family members when they're around, not knowing how to converse with them, and fearing that the family member is "slipping away". Don't be disturbed by this. No matter what you may want, they will slowly fade away (and therein is the pain for family members sometimes). But know that they are remembering and reimagining some of the happiest and most exciting parts of their lives, remembering the good times.

7. Frequently, families say it's unfair, that you don't have enough time left with them. Know this - you have advance warning, and everyone is cognizant of the eventual path/effect of these unfortunate diseases. My own Dad.....I had basically a 3-hour window to say goodbye. Many others have less, and/or have family members that pass away in much more painful methods. As hard as it may be to hear....be HAPPY for the time you have left together, and cherish the memories. As my wife told me when I basically had less than an hour left with my Dad, "don't leave anything left unsaid, good or bad". Leave no stone unturned, and have no regrets. If you love your Dad, let him know that, word for word, and discuss it with him without beating around the bush about things.

Fos, as much as you and I sometimes don't agree with things, as much as we may debate or jibe back and forth about subjects relating around politics or other ilk, know that my eye watered up while working my way through this for you. Know that many feel your pain, and wish you nothing but as-calm-as-can-be seas ahead of you. Best wishes and good karma being wished along for you and your family, bud.