It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-30-2012, 12:42 AM   #1
Newbie
(female)
 
Bardess's Avatar
 
Join Date: Jan 2012
Location: Thunder Bay, ONtario, Canada
Posts: 5
Bardess HB User
Early Onset Alzheimer's Parents

Hi everyone.

I've been looking for a place to talk with others who are also going through the heartbreak of Early Onset. My Da was officiall diagnosed 3 years ago now, after 4 years of what they were calling 'Mild Cognitive Impairment' because nobody really wanted to use the "A" word. He's 52. I'm 32, and have 4 younger brothers. The youngest has just turned 13. The boys all live at home still. My partner and i sold our old house, and bought a new one a block and a half away from my parents home to be closer, to be able to help out a little more.

It's all been rather frustrating to deal with. But i guess what's finally pushing me to post/find others today would be the annual work-up Da went to yesterday. He has significantly declined (which we knew of course). He's now testing in the 'severe' range. It's hard because there are these amazing things. For example? His clock is PERFECT! Beautiful even. (But i suppose that's no surprise, he's been an architect, and police officer his whole life. Precision has been his daily focus for a good 30 years!) However he cannot get the hands to point where they need to go. Most things he's awful at though, which is of course why he tests so low.

What's the hardest sometimes? That nobody else really gets it. Even if i know someone who has a family member with Alzheimer's - It's usually their grandparent, or perhaps a very elderly parent. Things with Early Onset are just SO different. Nobody gets that. And because my Da is still 'young' and healthy looking people either don't believe there's a problem (Da begged for almost a full year for our church to make someone else the treasurer, as he KNEW he was unable to do it any longer. Nobody paid any attention to him. ARGH!) or they sort of wave it off like 'oh yeah my great uncle had it'.

It's not the same. Besides that, we as his children are all so young it's hard to really grasp what's going on. My youngest brother doesn't really understand and often says 'Da we talked about that like 5 minutes ago.' My 18 year old brother is unfortunately stuck being remembered by Da as the 'difficult angsty teenager', even though over the last year or two he's really grown into a great young adult. My 7 year old asks why Papa has such an awful disease.

I wondered if perhaps there are others out there who are going through this same disorienting experience, and wouldn't mind sharing a little? It's just so hard when it seems like nobody gets it.

And as positive as my parents are (Da still scores very well on the 'feelings' checklist and is not depressed or negative about his situation at all) and as wonderful as our lives truly are and we are making the most out of these years that we can, it's still an awful horrible disease and i hate it.


.... Anybody?

 
The following user gives a hug of support to Bardess:
ninamarc (01-30-2012)
Sponsors Lightbulb
   
Old 01-30-2012, 04:15 AM   #2
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
re: Early Onset Alzheimer's Parents

Hi Bardess. We have 3 kids who ranged from 10 to 16 when their Dad was diagnosed, and I understand completely. It's horrible. Yes, their Dad also looked "normal" and it became increasingly difficult to manage every day life.

I still remember being in the grocery store, and guiding him to help us put groceries in the cart. He was trying to be helpful. The cashier gave me the dirtiest look for how I was treating him! Those looks were frequent. We'd order for him in restaurants, tell the barber how to cut his hair, or guide him to sit in movies or at school events, and people would look at us like we were being horrible to him. I had to hold an umbrella for him, since he didn't know what it was for. I didn't want to have to explain his illness, and obviously there's no "Early Onset Alzheimers" badge.

I remember the clock drawings. We got to the the point where the clock was a marginal circle with a few marks, around year 6 after diagnosis. By year 7, DH wouldn't understand the request to draw a clock anymore.

Anyway, our kids are now 19-25. Their Dad entered a nursing home 2 years ago. We kept him home with the help of day-care and a home health care worker until he was wandering, wouldn't sleep at all, couldn't understand speech, didn't know how to use a toilet or how to dress himself, and was having some outbursts. He had to sit in the back seat of a car since he would try to open car doors when the car was moving. Our entire family became caregivers. I have a job that supported the family, but worked very long hours. In our case, DH always appeared to know he had AD. He was generally cooperative with our efforts to care for him.

One of our kids wanted to "hide" their Dad's illness through school, because it's very hard to be different as a teenager. One of our kids went off to college and didn't ever ask about how things were going with the rest of us. One of our kids became a caregiver and completely gave up a personal life (against my wishes), rushing home from school every day to try to help. I met with the school guidance counselors, and they knew what was going on. There was at least one episode where a kid broke down crying in school.

We learned that we were not alone with dealing with tragedy. There were a surprising number of other kids in the school dealing with hard times, like parents who were dying of cancer.

There were some horrible times, like when DH wandered away and I couldn't pick up a kid from a school event since I was working with the police to try to find him. They each had one or two good friends who helped a lot. I tried to encourage them to go to their friends' houses. DH would try to sit with them at our house. They volunteered a lot (which also helped to get them out of the house). One played a sport, which gave this kid a break from caregiving and even led to college recruiting.

There is an AFA Teen website, that is especially designed for kids in this situation. There's even a scholarship at this site. Our local AZ association was not helpful. They had a early onset group, but said that we were "too far along" and would be discouraging to other families. Two of our kids volunteered for them though, and one of our kids actually became a speaker at various events in the region. Our kids offered to talk to other kids of early onset patients through the local AZ association.

I tried going to several support groups, but only encountered people with elderly family members. Their issues and experiences (fall risks, interactions of medicines, giving up their homes or managing assisted living, elderly parents) were very different from the issues and experiences of early onset families (losing wages and jobs, dealing with children's issues, loss of spousal companionship/sex, physically healthy patients becoming aggressive, etc.)

Overall, the 8 years until DH went into the nursing home got tougher and tougher. There are times when you become impatient or even angry with the patient. Sometimes it's hard not to want the patient to "try harder," or "be more careful." Then you feel guilt and remorse. My kids have told me that they don't really remember what their Dad was like before he got sick. I'm very glad that we had a lot of pictures of them doing things with him, since it appears that their memories are now tied to those pictures.

It took about a year after their Dad went into the nursing home to start to normalize the family and get back to sleeping, having friends over to the house (we had to replace a lot of furniture for yukky reasons), etc. They still don't tell people about their Dad, unless they get to know the people well. They have encountered two situations in which parents of other kids have told their children not to get romantically involved with my kids because my kids had "bad genes."

They are doing well though. Two are in grad schools and one is in college, all doing great academically. They still volunteer a lot, and one raised almost $1,000 for Alzheimers reseach this year. Two are becoming medical professionals (Pat self on back!).

Hard to believe we're going into year 3 in the NH. DH is now in a geri-chair, and has stopped walking. I think he still knows us though.

 
The Following 3 Users Say Thank You to Beginning For This Useful Post:
Bardess (01-31-2012), CSkel12 (06-26-2012), odettetoabird (07-06-2012)
Old 01-30-2012, 06:17 AM   #3
Newbie
(female)
 
Bardess's Avatar
 
Join Date: Jan 2012
Location: Thunder Bay, ONtario, Canada
Posts: 5
Bardess HB User
re: Early Onset Alzheimer's Parents

Yes! Thank you, Beginning. The support group thing is especially difficult for my Mother. It's the same issue. Except we don't even have an early onset group. So Mum isn't comfortable going because there's just not much help there when we're talking about people her age dealing with their elderly parents, or the elderly dealing with their spouses. She just doesn't fit in. They of course feel that she doesn't fit in either, because my Da isn't like all the others either. As if my mother doesn't NEED support because what she's going through isn't the same as them. Gah!

Thank you for sharing your experience with me. It really means a lot. My brothers are all over the board when it comes to dealing with all things Da related. The youngest is at home with him the most, just by nature of his age. However he does have a good friend base, and spends quite a bit of time out of the house pursuing after school activities and such. The oldest of the boys (who i really feel should be stepping up and HELPING our Mum out, as he is 30!) really doesn't seem to care much one way or the other. He's fairly selfish i suppose. I'm not sure he's even grasped what's actually going on in the house. I know our reactions are all going to be different, but i wish it wasn't so hard.

Mum is determined that he not go into a home, ever. I hope this changes as things get more difficult. This past year she was forced to quit her job to stay at home with Da, or the doctor said he would have to recommend Da to a NH. This of course makes things even more difficult on the home front, as the boys are still young enough to have lots of activities that require money. I know it's tough on her. But i'm not sure what else i can do to help.

 
Old 01-30-2012, 09:37 AM   #4
Veteran
(female)
 
jagsmu's Avatar
 
Join Date: May 2008
Location: BC, Canada
Posts: 387
jagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB User
re: Early Onset Alzheimer's Parents

welcome aboard,my mom is in the older catagory, I am glad to see you posting. your range of questions will differ from most on here and your experiences will also be different. Make sure your mom has regular time off, an afternoon for girly things, or shopping, perhaps if as you say you are close arrange to take dad to the dr.s appointments so mom can have a rest. looking after someone with alz, old or young is not only physically hard but mentally hard. Just being there for mom to talk will be a great help. you are a great son to be so invovled with your parents.

judy

Last edited by jagsmu; 01-30-2012 at 09:43 AM.

 
The Following User Says Thank You to jagsmu For This Useful Post:
Bardess (01-31-2012)
Old 01-30-2012, 09:52 AM   #5
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
re: Early Onset Alzheimer's Parents

My FIL who is 91 has severe stage of Alzheimer's. I have no experience with early onset.
I am sure this is heartbreaking. I am so sorry that you, your Mom and your siblings are having a hard time.
Indeed the person would have strange behaviors and often the family are hurt by his "innocent" remarks and etc.

Beginning knows more about this.

Weclome to the board and we are here to support you!

Hugs,
Nina

Last edited by ninamarc; 01-30-2012 at 01:44 PM.

 
The Following User Says Thank You to ninamarc For This Useful Post:
Bardess (01-31-2012)
Old 01-30-2012, 01:50 PM   #6
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
re: Early Onset Alzheimer's Parents

Your Mom is great that she wants to devote to him 100%. However as most of us have experienced so far, it is hard. Unless we have lots of money and manpower, there is no way we can help the person all the way until the last minute (unless the person dies quickly from heart attack or other conditions earlier.)
It took us 7 or 8 years to take care of my FIL after my late MIL died in 2004.
He has been in a NH for almost a year and half. The money for the NH is also another issue.
Your Mom will need help for caregivers and etc. later on.
When he is in moderate/late stage, he will be more difficult. It is not about being positive. It is the way the disease is in mid/late stage. He will be more and more cynical (mentally ill) and he will get sicker physically. He will stop walking/talking/eating/thinking... Early onset may take 5 to 10 years... (I knew it is 5 years for a typical early onset case.)

As well, early onset also has stronger genetic link for the kids. But it does not mean the kids will get it.

Indeed it is hard for the kids now because they have to be Dad's parents now. It is hard.
Dad may be like a Dad now given the bad talks, but he will be like a kid with the body of an adult. It is hard and also: kids are cute, the patient is not!

Please seriously consider help from outside - your Mom won't be able to do it all alone later.

Take care,
Nina

Last edited by ninamarc; 01-30-2012 at 01:55 PM.

 
Old 01-30-2012, 04:35 PM   #7
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
re: Early Onset Alzheimer's Parents

I'd say that the best things you can do right now are

(1) start to learn about Medicaid, or whatever other resources may be available if you're not in the U.S. As much as your Mom and the rest of the family thinks she can handle it by herself, the odds are heavily against her. As others have mentioned, the time comes that physically she won't be able to lift him, toilet him, shave him and cut his toe nails, manage possible anger issues, etc. Despite all of the good intentions in the world, her own health may also suffer to the point that she may not be able to care for him full time. He may begin to have some of the other possible health effects relating to AD, like seizures. You can help her by using this time to gather information, so that if he needs placement the family is prepared.

We ultimately realized that DH's life would be improved by being in a faciity with 24-hour a day caregivers, who were trained to care for Alzheimers' patients. His world expanded (from being stuck in our house), to a safe Nursing Home ward with people coming going, trained staff and various activities. We are still his caregivers, since we visit frequently, monitor his health, decorate his room, etc.

2. You can help her by offering to take care of him for a few hours every week. Maybe she'll go into a room by herself to nap. Maybe she'll make her own doctor appointments. Maybe she'll go grocery shopping, which may become increasingly difficult to do with him. Maybe she'll schedule a school conference. As the patient becomes increasingly ill, it's harder and harder to take them places. Knowing that she has some time of her own will be a tremendous relief.

3. You can help your family by taking the younger kids into your home, when they need a break. Just being there for them will be a huge help. Maybe their Dad won't be there for school activities, but having you there means that they still have a family that cares. Any normality that you can give them will be appreciated forever.

4. You can help your family by keeping the oldest informed about what is going on. Check with your Mom though. She might actually be talking to him more than you know. Family dynamics can get very weird during caregiving. Siblings fight over everything from who is doing more for the family to who gets family mementos...the stress of this illness hits everyone differently, but old sibling rivalries can pop up again. This can sneak up on families. He might not be a good caregiver but maybe he can help your Mom with some of the manly things (LOL) that your father would have done, like getting oil changes for the car.

5. You can take care of yourself. Find things to enjoy about life, and share them with your parents. Take pictures. Tell him how much you love him, and tell your Mom how great you think she's doing. AD patients pick up on stress, even if they may not understand the reasons for it. They're very good at reading facial expressions, even when words fail them. They don't do as well with a lot of noise, crowds, changes, etc. Your Mom will find some peace in knowing that you're doing ok.

I hope these tips help. It's such a long road of ups and downs. Just when you think that you're able to manage a particular stage, there's a drop off or a new problem that appears to be insurmountable. Then you adjust to the new stage, and it starts all over again.

 
The Following User Says Thank You to Beginning For This Useful Post:
Bardess (01-31-2012)
Old 01-30-2012, 08:07 PM   #8
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,182
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
re: Early Onset Alzheimer's Parents

Welcome aboard Bardess. Yes, each case is different but they all have much in common. No matter the ages there are difficulties. It is not "normal aging". Glad Beginning is here to answer your specific questions She is our resident EOAD expert! Hang around....

Love, deb

 
The Following User Says Thank You to Gabriel For This Useful Post:
Bardess (01-31-2012)
Old 01-31-2012, 10:11 PM   #9
Newbie
(female)
 
Bardess's Avatar
 
Join Date: Jan 2012
Location: Thunder Bay, ONtario, Canada
Posts: 5
Bardess HB User
re: Early Onset Alzheimer's Parents

Thank you all, for your kind words and support!

I know my Mum won't always be able to care for Da. I think deep down she knows it too. Perhaps she's just saying she will be able to do it on her own forever just for the younger boys' sake? Either way, for now it's fine. She has one weekend a month where the boys and I make sure we're around the house, and she goes all day friday/sat/sunday to a sewing/quilting group thing. She also has a Tuesday night group she takes part in. She and Da have a bowling adult league they are in. And whenever i need to do a shopping trip for new clothes for my son (at 7 years old he's growing out of clothing every other week!!) I 'pretend' i need her expertise and take her with me while the boys (and Da) play video games with my son.

The reasons for buying a house 2 blocks from my parents was just as much to help my Mum, as to be a place/haven for my little brothers. They know they are always welcome, and we have a futon in the playroom just for them. Our house is often full of boys, which is good.

My Mum tries very hard not to be negative about the oldest of the boys (30 yrs old). But i know he doesn't talk to her, or listen to her about anything. I also know it took him wanting something done in the backyard for HIMSELF (buiding a brick firepit, which Da had promised Mum years ago) before he offered to help at all with anything. I know he's mostly a drain on Mum (she has told me this, though she also admits she just 'worries' about him) but i'm not exactly sure if there would be anything i could say to him that would improve any of that. Part of me just wishes he'd be more 'there' and pitch in around the house. Even if it's just taking the garbage out or doing some dishes. the other part of me feels that it would be a bigger relief for Mum if he actually was proactive about his life and found himself an apartment and showed he could take care of himself, so she doesn't have to worry and be caretaker for 2 adults and herself, as well as the 3 teenagers!

Things with my Da look ok from the outside, i think. People don't really give it much thought. And really, if someone asked how he was doing i suppose our answer would be 'he has his good days and bad days'. We've learned that indulging his sweet tooth often results in severe 'spaciness' as he calls it. Like he zones right out and is unable to peice together what's going on around him or take part in things. Though he also says it doesn't really concern him when it happens. So at least he's not freaking out inside. There are days when he asks the same exact question 18 times in the space of 30 minutes. This is the thing that bothers my brothers the most i think.

One day, one of the teenagers (L) had left to walk to school. It was chilly outside. There was a sweater draped across one of the lounge chairs in my parent's TV room. My Da walked out into the kitchen and asked one of the other teens (T) where L had gone. T said he was on his way to school. Da asked if T ever ran into L at school. T said - not really. Da said, 'oh, ok, i guess he'll just be cold then!' and went back into his sitting room. About 4 minutes later the exact same scenario was enacted. After the third time T was smart enough to realize it was the sweater triggering everything, so he went into the sitting room, chatted with Da about his TV program, and then discreetly took the sweater with him. That ended the cycle. Luckily before any of his 'teenage haughtiness' made Da flustered. Which is often the case with them.

It's the patience that teenagers are notorious for NOT having, that they really need to be able to deal with Da, and it's rough trying to teach them that. They're rowdy and restless and BOYS. You know? Also teenagers. These are not good combinations when Da decides to lecture them, and cannot remember the words 'responsibility' and 'morals'.

Anyway, i'm sorry for blabbering on and on forever. This is all just not something we ever thought we'd have to deal with. (I know, nobody ever does) but especially this early in life.

 
The Following User Says Thank You to Bardess For This Useful Post:
odettetoabird (07-06-2012)
Old 02-01-2012, 02:57 PM   #10
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
re: Early Onset Alzheimer's Parents

I am sorry that your teenagers (L and T) had to go through that..

You see, the trick is to find out why he said that. What is the trigger? The sweater? the door? the passing through? It is tricky and may take a while to figure out. This part is the same for regular onset. We had to figure out why my FIL said some strange things. He said dangerous. What danger? OK, he didn't like the way my husband handle him when he moved him from the chair to the wheelchair. So either he will do it right or let the caregiver do it.
There are so many episodes and everyday there is a surprise.
This reminds me my FIL's old neighbor. Anytime anyone bothered her, she went crazy and called all the authority for nothing. Not sure why she hated things so...

It is the same thing. I understand the problem is the teenagers are too young to deal with this! Well too bad they need to. Remove all the suspicious stuff or triggers.... That is why one day, Da may not be able to live at home with the kids. Not even for the wife. One day Da will be mean to his wife asking for unreasonable sexual request or whatever.

I really feel very sorry for early onset patients and the families. It is so sad...

I guess the kids just have to accept it. Also, if he says your brother is a younger teenager while he is 18, it may be that there are some triggers.... Saying one thing really means another for Da. Da cannot express anymore so he says other things.... Da does not know how to say what happened to the sweater and he does not remember whose sweater it is...

Your Mom needs to decide one day - her kids need a normal home. Da is important too so get a medicaid home or get an AL for Da.
Don't allow Da damage the kids' needs for growing.

It is a hard call.
My prayers are with you, your Da/Mom and the family.

Hugs,
Nina

Last edited by ninamarc; 02-01-2012 at 03:02 PM.

 
Old 06-26-2012, 02:11 PM   #11
Newbie
(female)
 
Join Date: Jun 2012
Location: Michigan
Posts: 2
CSkel12 HB User
re: Early Onset Alzheimer's Parents

Beginning -
I know you posted this a while ago, but I just stumbled upon it today while looking for some sort of support. I am 20 and my father, who is 57, was diagnosed with early onset almost 5 years ago. I have a 22 year old and 16 year old brother. The situation you described was the closest thing I have read to what I, and my family, are going through. Thank you. For making me feel not so alone today.
Colleen

 
The following user gives a hug of support to CSkel12:
odettetoabird (07-06-2012)
The Following User Says Thank You to CSkel12 For This Useful Post:
odettetoabird (07-06-2012)
Old 06-26-2012, 06:33 PM   #12
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
re: Early Onset Alzheimer's Parents

Quote:
Originally Posted by CSkel12 View Post
Beginning -
I know you posted this a while ago, but I just stumbled upon it today while looking for some sort of support. I am 20 and my father, who is 57, was diagnosed with early onset almost 5 years ago. I have a 22 year old and 16 year old brother. The situation you described was the closest thing I have read to what I, and my family, are going through. Thank you. For making me feel not so alone today.
Colleen
You're definitely not alone. My 20 year old just went to visit her Dad in the NH a few minutes ago! With older brothers in their early and mid 20s, all of our kids were raised with their Dad's early onset Alzheimers. (I laugh that my oldest kid who was 16 when my spouse was diagnosed is a crummy driver today because we didn't know that his Dad was demented when he taught him to drive...unlike the others, who learned to drive with me!) Like others on this board, we often see some humor in the situation along with the heartache.

If your Dad was diagnosed about 5 years ago, things must be getting harder for your family. While every patient is different, that 5-year marker was a bad time for us. My husband was still in day-care, but requiring an increasing amount of care. There was no way to pretend things were normal anymore, and we knew we were getting closer and closer to needing a nursing home. Somehow the sons were always able to handle things a little easier than our daughter. Girls and their Dads have a very special relationship which makes this illness even harder for them.

All you can do is take it a day at a time, which you've probably learned by now. Hopefully your Mom and friends are able to give you some support. Try to make sure that you don't let Alzheimers take over your life. It can, if you let it. There's a balancing act between always being at home to help out and being with your Dad as much as possible, and finding some way to be a 20-year old. You don't want your memories of your 20s to be completely sad and stressful.

I'll try to encourage my kids to register and post for themselves. You aren't alone though. The increasing numbers of early-onset cases are making your situation less rare...

 
The following user gives a hug of support to Beginning:
CSkel12 (07-07-2012)
The Following User Says Thank You to Beginning For This Useful Post:
CSkel12 (07-07-2012)
Old 06-27-2012, 06:47 AM   #13
Senior Member
(male)
 
Join Date: Apr 2012
Location: New York
Posts: 269
Luau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB User
re: Early Onset Alzheimer's Parents

My wife is 52 and showing definite signs of progressive cognitive decline consistent with early onset Alzh or frontal-temporal lobe D. Except for Beginnings, who have braved this path, I have found very few others with the experience of the particulars unique to early onset.

I too have 3 young adults boys, a 17 year old, a 27 and a 30 y.o. The 27 and 30 boys are both on the threshold of huge breakthroughs in their personal lives and in their careers. So both are extremely preoccupied. By far the hardest for me is to make them realize the seriousness of what is happening to their mother. Since they live so far away, it is very easy to be in denial.

The 17 y.o. is going to be a senior in high school and busy looking at university placements. The biggest problem has been the declining relationship between him and my wife. It seems that my wife still wants to parent, but she has forgotten that he is no longer 12 years old, and she has also forgotten to listen before lecturing. Half the time, her lectures don't make sense anyways. Obviously this sort of thing doesn't go down well with 17 year olds! The challenge with the 17 year old son is to make him understand better the disease, and learning how to handle her antics better.

I am just beginning this journey myself. So I don't really have much insight to offer. Mostly, I am scared sh*tless about my own ability to hold it all together.

 
Old 07-06-2012, 02:33 PM   #14
Newbie
(female)
 
Join Date: Jul 2012
Location: Croton, ny, united states
Posts: 3
odettetoabird HB User
re: Early Onset Alzheimer's Parents

thank you so much for your posts, i find them really helpful. i myself have a parent with alzheimer's, my mom, who's currently 58. i'm 22 and feel at a total loss for how to deal with all of this. my mom is in denial so we are constantly trying to hide her diagnosis from her. agg it is all just a mess and really, really sad. thank you for sharing your story---it makes me feel not quite so alone

Last edited by hb-mod; 07-07-2012 at 02:53 PM.

 
Old 07-06-2012, 02:51 PM   #15
Newbie
(female)
 
Join Date: Jul 2012
Location: Croton, ny, united states
Posts: 3
odettetoabird HB User
re: Early Onset Alzheimer's Parents

colleen, i also replied to this thread but wanted to reply to you individually because our stories are so similar. as i stated in my other post, my mother with early onset is currently 58, i have a 56 yr old father, i am 22 and my sister is 19. my mom was only diagnosed 2 yr ago--- i am so sorry you have had to deal with this for 5 years. if you want someone to talk to, i would love to speak with you further. i don't peronally know anyone in this specific situation and have become all too aware just how lonely this can be

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
is early onset always genetic? Thefaint423 Alzheimer's Disease & Dementia 9 12-06-2008 03:34 PM
Looking for advice ktl329 Alzheimer's Disease & Dementia 6 06-07-2008 07:46 PM
How distinguish one from the other? FeelinNullity Alzheimer's Disease & Dementia 13 10-30-2007 05:12 PM
Are there any other young people caring for alzhimers? Salllly Alzheimer's Disease & Dementia 14 12-21-2006 12:27 PM
A Movie for Early-Onset Alzheimer's gizmolove Alzheimer's Disease & Dementia 2 06-19-2006 01:28 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 05:52 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!