Anyone Dealing With Alzheimer's/dementia

[jaideeguy]

I am dealing with my 90 yr old father who was diagnosed 4 yrs ago with mild dementia and because of a broken hip [3.5 yrs ago], we took him into our home in LOS to care give and my Thai wife used to refer to his forgetfullness/nastiness/complaining/stupidity as just being a 'naughty old man' when it was kind of cute and innocent.

Well, things took a trun for the worse when he refused to give a small token gift of 500thb to my adopted 10yr old daughter and admitted his dislike/hate for her. A blow below the belt for me and an insult to my wife. I was also hurt and extremely insulted and realised that mayby

his dementia has progressed into a more severe dementia and/or alzheimers??. He sees no fault in his nasty remark and has forgotten it the next day.......a symptom?

It is a terrible disease that I wouldn't wish on anyone.....the patient or the caregiver.

Does anyone know if there are any resources and/or if it is even recognized here where insanity is often accepted as the norm??

And is anyone else dealing with it or has experience with it??

I need help in dealing with it [on a care giver's level] and is it controlable or curable??

And are there any English support groups or resources up here in Chiang Mai??

Edited December 21, 2009 by jaideeguy

[Mosha]

My dad had Alzheimers, I lived with him through the early stages, but holding a job down made that arrangement impossible as he got worse. He never forgot his own kids but spouses were another matter. He was never really nasty with anyone, and that I suppose was his nature shining through. We used to have meetings with his social worker and doctors. We were told he was having ministrokes, and his deteriating would be like watching someone descending a flight of stairs. That was wrong, it was like someone taking an almighty leap of the top step and landing at the bottom of the stairs.

In the early days it is like an eccentricity, as it got worse he became a danger to himself and to me. Turning the gas on without lighting it was the last straw, along with deficating in his bed 2x in one night. I must admit I was at my lowest ebb that night, and would cheerfully have driven my self into the Yorkshite Pennines with a length of hose to stick in the car exhaust. If it is Alzheimers his brain will eventually get to a stage where it can't control his basic functions. I was the last to see dad alive from the family, I think he knew he was dying. I believe that people in dad's position are given a last few hours of lucidity to clear things up with family etc. He was fighting for every btreath, and his last words to me were "Help me Stephen". I was in a position where I could do nothing except weep. I was working next day, so I gave the nursing home my number and to call me if anything haapened. As I walked into the plant office the phone was ringing. We had 2 ring tones, on site, and one off site. It was the latter tone and I knew even though it was not my office that that was the call.

My Eldest brothers Mother in Law also had it. She could read a daily newspaper several times a day, and each time was like she had just picked it up for the 1st time. They say it is not herditary, well dad was the 3rd in his immediate family. A younger brother and elder sister had it too.

One symptom that will tell you is, if he crosses from one floor colour to another on a flat surface, and he steps over it like a small barrier is there. Well his doctors told me that all Alzheimer sufferers do that.

I hope there are support groups for you, but I would not bet on it.

[Mosha]

This might help

http://www.alz.org/alzheimers_disease_know_the_10_signs.asp

BTW the Koreans call it "The long Goodbye", it's set to become a major problem esp in SE Asia as life expectency increases.

[h1lander]

I am in healthcare in the UK (part-time NHS and part-time private) and am dealing with patients on a regular basis who have all sorts of debilitating diseases. Sad to say, but it does sound as though the condition is worsening in your Dad.

It is not uncommon for patients like your Dad (and worse) to ask the same question of me at least once a minute despite being told the answer repeadedly. Changes in character are quite common. It can be extremely taxing on relatives an relationships as the person you see becomes less and less the person you knew and loved.

You need to have the patience and understanding of a saint to cope. I wish you all the best.

[Sheryl]

I am afraid there isn't much of anything available in LOS (altho on the plus side, live-in help is much cheaper than in the west!). But there are on-line supports you can access

http://www.ec-online.net/

http://groups.yahoo.com/group/alzheimers/summary

http://www.alz.org/living_with_alzheimers_..._boards_lwa.asp

And the US National Institute on Aging has a good booklet for caregiviers you can access online at http://www.nia.nih.gov/Alzheimers/Caregiving/HomeAndFamily/

Good luck

[phetaroi]

My experience is only second hand, but I offer it.

I had been very close friends with a couple when I taught in Maryland years ago. He had been a principal, she a co-teacher of mine. After a few years I moved to Virginia, which although an adjacent state was still a far distance, so for a couple of years we didn't see each other, although I would talk with the wife on the phone a couple of times a year. One day I called and the husband answered the phone and it was clear he had no idea who I was. I still didn't think too much of it.

Then we didn't chat for a couple of years...you know how it is...out of sight, out of mind. But finally I got back in touch with the wife and we got together for dinner. She told me the whole sad story of how the husband had rather quickly fallen into Alzheimer's. His was one of the more aggressive and severe cases. At first it was just weird stuff and she handled it like a veteran (for example, his saying, "My goodness, my violin. I haven't played it in ages," while holding a candle holder...and having never played the violin!

But then it devolved to the point where he could not even function in basic ways -- going to the bathroom, eating, and so forth. Finally the wife gave up and found a very good institution for him. Broke her heart, but as she said, "He's not the man I knew and he has no idea who I am. And, I simply can't care for him at this point. I am not capable of doing so. So, I did what had to be done...though it broke my heart." He died in a fairly short time. I still think of him and what a wonderful guy he was, but I also know that his wife rescued her own life by putting him in special care.

I wish you the best of luck with your family...all of it.

Edited December 21, 2009 by phetaroi

[jaideeguy]

Thanks to all for sharing your experiences and tips.......I've been consulting with Dr Google for the last couple of days and gleaning info in my crash course in Alz and Dementia.

have had a few conversations with Pop that seem to be going nowhere......he still doesn't remember the event and won't cop to the damage/pain he caused and maintains he did no wrong.

I'm wondering if giving him the dementia check list of symptoms would do more harm or maybe some good??

Is the paitient knowing about their condition good or bad??

[Mosha]

It's often said, the real sufferers are people who are in the position you are now. I hope you are able to explain things to your significant other, I never had that problem I was on my own. If you like PM me.

[jaideeguy]

It is absolutely, definately, for sure the hardest, worst, most thankless, most irritating, lowest paying, frustrating, least appreciated, dirtiest job I have ever taken on, but I volunteered for it and I will see it thru......or put the old fart into a home!! Unless he outlives me....which is possible.

[jaideeguy]

Just today.......3 days after the 'incident', I spoke with him in a calm manner and he still doesn't see his hurtfull insulting remarks as wrong and stubbornly refuses to apologize.........my sick father can rot in hel_l and not a tear will be shed by me when he goes. Imagine how my wife feels by the insult to her 10yr old daughter. She is avoiding him completely which lays more responsibility on me to interact with the nasty old monster......so I continue to just 'do my job' with no love, respect or feelings except pitty and anger.

[sbk]

You have my deepest sympathies jdguy. But, look at it from his perspective, if he honestly cannot remember saying it, then he probably believes that he did not say it at all.

That said, personality changes are not unusual and while its difficult for you, its equally difficult for him. My dad is quite a bit younger than yours but equally immobile --and more willing to talk about it. He said its hel_l going from being a strong man who can do everything and anything and take care of himself to being dependent, crippled and feeling utterly useless. He gets frustrated and sometimes that frustration turns to anger which gets taken out on my sister or her son (my sister is his caregiver). She said at first she took it personally but finally she realized that if she were in the same position, she'd probably be equally a pain in the ass. So, she lets it go.

[Pdaz]

I had something to say... But for the life of me I can't remember what it was.. dam_n 'Old timers' is catching up with me again...

[jaideeguy]

I do empathise with 'the old fart' [his description of himself].....I call him much worse names now. I do hope to die before tha pain, suffering and indignity set in, but we can't call all the shots. It's ironic [and sad] that my dear sweet mother died at an early age and my nasty old fart of a father, who I was never close to is cursed with a long life. My Buddhist wife says he has to go thru the suffering because he was never loving....but why do I have to suffer along with him??

So sbk....... How does your sister 'let it go'?? I need some tricks so I can remain detached....this is driving me mad.

[Mosha]

When dad was mentally fit. He hadn't being physically fit since I was 15 after a massive heart attack and 2 strokes. He used to say he didn't want to end his days where he was incapable of helping himself to life's basics. That's exactly how his life ended. Rather than taking him through the check list, use it for personal observations.

Some of the things that upset the family at the time, well now we smile at. Like I said dad was the 3rd of his siblings, so after we would compare notes. Before my dad's younger brother died. His daughter cared for him without telling the family what he was suffering. That mainly because another brother referred to people with mental illnesses as nutters. He changed his attitude after his sister died and another brother (my dad) became inflicted with that curse.

As SBK says, your dad can't help it. How he is, is part of the illness. If your wife doesn't understand Alzheimers the Thai name is rôhk an-sai-mer.

I have just found this, it might help.

Alzheimer's and Related Disorders Association of Thailand

114 Pinakorn 4

Boramratchachunee Road

Talingchan

Bangkok 10170

Thailand

Tel: +66 2 880 8542/7539

Fax: +66 2 880 7244

Web: www.azthai.org

[goldfinger]

jaideeguy,

ever thought about looking for a professional nurse to take care for your dad?

because the problems will increase, its better for you and your family to get some distance.

[sbk]

I do empathise with 'the old fart' [his description of himself].....I call him much worse names now. I do hope to die before tha pain, suffering and indignity set in, but we can't call all the shots. It's ironic [and sad] that my dear sweet mother died at an early age and my nasty old fart of a father, who I was never close to is cursed with a long life. My Buddhist wife says he has to go thru the suffering because he was never loving....but why do I have to suffer along with him??

So sbk....... How does your sister 'let it go'?? I need some tricks so I can remain detached....this is driving me mad.

I spent the summer at my sister's house and found him difficult to deal with at times too. The main problem my sister has is she is exactly like my dad, so even if he were fully fit they'd still rub each other the wrong way. Admitting to that fact was the first step for her.

But to be honest, we both love our dad dearly and it pains us greatly to see him deteriorate -- with the physical incapability has come a, well, deadening of his will or spirit. When my mom died, he gave up. Unfortunately for him, his body hasn't. So, basically, when he really angers my siser, she walks away. Then, gets out the old photos and remembers how lucky we were to have a really great dad and all the things he did for us and how much he loves us. that helps alot she says. You will have to find your own way to let it go, but I really think the first step you have to make is to admitting that the anger only harms you. when you get mad at your dad, take your daughter out for the fatherly things she will always remember and you can then think that when you are a crotchety old fart she will have those good memories to look back on as well

[villagefarang]

From experience let me say this we be an ongoing problem and it will continue to get worse. There are some drugs that can help with "some" symptoms but you never get back the person you once knew.

Any form of confrontation only makes things worse, like correcting them or lecturing them about how many times you have already told them. In essence you are dealing with the disease not the person you used to know.

Eventually they respond to emotion more than words or rationale so you must control your temper, speak softly and smile. They no longer live in our world so our rules just don't apply. Don't let your feelings get hurt by what they say. They didn't say it, the disease said it.

[goldfinger]

@villagefarang,

very good , its very sad, bu the patients really stay in another world

[jaideeguy]

Thanks all for sharing your suggestions and experiences.

To answer a few.....we did hire a daytime caregiver that may become a live in soon if this progresses more. Good, experienced and caring guy but somewhat limited English.

"You will have to find your own way to let it go, but I really think the first step you have to make is to admitting that the anger only harms you. when you get mad at your dad, take your daughter out for the fatherly things she will always remember and you can then think that when you are a crotchety old fart she will have those good memories to look back on as well"

good words sbk.....if I learn one thing from this miserable experience is that I don't want my kids or anyone having bad memories of me. I will say that my father and I were never that close and fate is twisted in that I have become his primary caregiver. We were never that close and probably never will be.

The only way I can cope with him now is strictly professional and detached and over the course of this afternoon, we only exchanged 8 to 10 words. My last full sentence to him was 'I will continue to "do my job", but don't expect my love, respect or compassion'.

mosha....i did check out that website www.azthai.org , but it's in Thai only.

Maybe someone could guide me to an English support group here in LOS?? I will check out support groups in the US, as I can talk free via magicjack or skype. Someone to talk to would be great.

I did get a couple of leeds on counseling up here in CM, but unfortunately they were religious based and i would prefer no religion.....I got my own.

Edited December 22, 2009 by jaideeguy

[Mosha]

The website may help your wife to understand.

[L33tsp33k]

I'm afraid I don't know of any such organizations but I just wanted to say good luck with everything. I cared for a family member for a while before she passed on as a result of Alzheimer's and it is such a debilitating disease that causes both frustration and hurt on the caregiver as well. My thoughts are with you.

Good luck.

[billp]

The thing is he's not a "crochety old fart" or a nasty old man or anything. He's just a very sick person. He honestly doesn't remember things, relationships or conversations and place them in context. The things he says or does are not meant with malice and they shouldn't be taken seriously by those around him. Just try to think "it's the disease talking, not him." As this goes on, the world will become very random and arbitrary for him and he may react with anger, even physical violence. Each stage will be temporary. At the end he probably won't talk any more at all, and his body may "forget" how to perform functions like digesting food, and he'll look like a concentration camp survivor. My wife has been acting for years as legal guardian of an old friend with Alzheimer. He just died recently at age 92 and that's how it went.

[jaideeguy]

the following is my observation of his dementia......he says he scores low......[his delusion]

the caps are my assessment and three YESSES mean severe

His physical limitations are that he has osteoporosis and has been bedridden for the last 2 months with his 4th fractured verterbrae..........cause for a lot of his frustrations and possible faster onset of dementia. I don't think that his condition has yet progressed to Alz and what good would a diagnosis do?? Alz is just another form of dementia, right?

This quick dementia assessment coppied from webmd

Early dementia

Word-finding difficulty - May be able to compensate by using synonyms or defining the word

YESYESYES

Forgetting names, appointments, or whether or not the person has done something; losing things

YESYES

Difficulty performing familiar tasks - Driving, cooking a meal, household chores, managing personal finances

YES

Personality changes (for example, sociable person becomes withdrawn or a quiet person is coarse and silly)

ALWAYS BEEN WITHDRAWN/UNSOCIABLE [iN MY MEMORY]/NO CHANGES UNFORTUNATELY

Uncharacteristic behavior

BEING A GROUCH HAS ALWAYS BEEN HIS CHARACTER

Mood swings, often with brief periods of anger or rage

YESYES

Poor judgment

YES

Behavior disorders - Paranoia and suspiciousness

YESYES

Decline in level of functioning but able to follow established routines at home

YES, BUT NO

Confusion, disorientation in unfamiliar surroundings - May wander, trying to return to familiar surroundings

YESYES

Intermediate dementia

Worsening of symptoms seen in early dementia, with less ability to compensate

YESYES

Unable to carry out activities of daily living (eg, bathing, dressing, grooming, feeding, using the toilet) without help

YES, BUT BECAUSE OF PHYSICAL LIMITATIONS

Disrupted sleep (often napping in the daytime, up at night)

YES, BUT SLEEP PATTERNS CONTROLED BY XANAX AT NIGHT

Unable to learn new information

YESYESYES

Increasing disorientation and confusion even in familiar surroundings

YESYES

Greater risk of falls and accidents due to poor judgment and confusion

YESYESYES

Behavior disorders - Paranoid delusions, aggressiveness, agitation, inappropriate sexual behavior

YESYESYES, EXCEPT FOR SEXUAL

Hallucinations

YESYES

Confabulation (believing the person has done or experienced things that never happened)

YESYES

Inattention, poor concentration, loss of interest in the outside world

YESYESYES

Abnormal moods (anxiety, depression)

YESYESYES

severe dementia

Worsening of symptoms seen in early and intermediate dementia

YESYES

Complete dependence on others for activities of daily living

YESYES, BUT PHYSICAL

May be unable to walk or move from place to place unassisted

YES, BUT PHYSICAL

Impairment of other movements such as swallowing - Increases risk of malnutrition, choking, and aspiration (inhaling foods and beverages, saliva, or mucus into lungs)

YESYES

Complete loss of short- and long-term memory - May be unable to recognize even close relatives and friends

HIS MEMORY OR LACK OF SEEMS TO BE SELECTIVE AND i WILL BE GLAD WHEN WHEN HE LOOSES IT ALL...THEN MAYBE HE WON'T BE SO NASTY.

The person may not be aware of these problems, especially the behavior problems. This is especially true in the later stages of dementia.

Depression in elderly people can cause dementialike symptoms. As many as 40% of people with dementia are also depressed.

[Mosha]

Even if we are a bit spread out, it seems you have a little on-line moral support group here.

[jaideeguy]

Yes, and I thank you all and wish you all HAPPY HOLIDAYS!!

this forum and [most of] it's members have been my best friend for several years and I would like to especially thank the mods for providing/maintaining this forum for us misfits over here in this strange land.

[sbk]

happy holidays to you as well

[Mosha]

Most of my observations in the early days came from neighbours. Dad would stand at the corner of the house, and keep peeping round the corner. Obviously part of increased anxiety. When we as a family decided it was time to alert the local health authorities, was when one day he got lost. He had been to the village post office to collect is pension, then went to do some shopping. At this stage he was about 500yds from home. He left that shop and turned the wrong way, and ended up about a mile from home. He was walking up and down peoples paths, this bloke saw him and asked him what he was looking for. Dad told him that he was lost, but he lived on Smithy "something". The something was Parade, but he could not remember. The knew roughly where dad mean't and brought him back to where dad knew where he was. Some parts of where I lived were not all that pleasant, and the thoughts of dad wandering through them with 120 pound in his wallet was not a pleasant one. One of the things I did almost immediately was get power of attourney, and the rights to collect his pension.

When he was placed in a home the most stupid question was being asked if it was all right for him to smoke. I just replied. "It's a bit late for him to stop now isn't it?' He was in his early 70s.

[jaideeguy]

I've 'chilled out' quite a bit since my earlier posts....time heals and the overload of knowledge out there on Dr. Google as well as joining a great forum alz.org that has caregivers going thru much worse than me. A caring counselor brought me to tears with her acknowledgement of my situation on the alz.org hotline.

Have also learned some coping methods and have somewhat of a direction to go in. As Sheryl said early on....'there's not much here in LOS for alz/dementia support' but I did manage to contact an English speaking dr with alzthai.org and he suggested the govmt hospital in CM for a place to start.

Conferences with my brother and sister as well as Pop make me want to slow down when it comes to Dx [labeling] at 90 yrs....maybe just go with the flow.

Also have confered with Pop's GP dr and he will give Pop a complete physical to rule out any contributing diseases that may be manefesting in his outburst.

now I'm suffering from formation overload' but want to thank those who replied with their kind advise.

2010 looks good so far.

[sbk]

Glad to hear you've found the support you need, best of luck with your dad.

[Wrong Turn]

There is a history of Alzheimer's in my family (dad's side) and also dementia (mother's side) with my Grandmother's sister.

My Grandmother is 94, independent by living alone and still driving.

She's very clear headed, and can hold conversations on a variety of topics.

However.....she is making accusations that are bizarre, and factually untrue.

She accused the neighbor in the apartment below of trying to "steal her papers" and thought he was going to "kill her" by hitting her on the head with a hammer. She also called the police. No evidence of this, and the neighbor is very nice, and our family knows his parents.

She has made other bizarre accusations of family members: she accused my father of "planting" the neighbor below here, so the neighbor could "steal her papers."

After these accusations (of which there are many) she talks and acts normal and rationale.

I am quite sure that she is in early stages of dementia - can anyone give info if this is true?

I think it will only get worse, as time goes on.