My dad was diagnosed with this disease last summer, and I'm very afraid and confused. I'm 30 years old, I'm married and I have two children, a girl who is 22 months old, and a boy who is almost 7 months. I have a very demanding life right now, and I'm scared about my future and unsure of how to maintain a normal relationship with my father.
My father is married and her daughter actually works for a local Alzheimer's organization, so they have good people helping them with this. I have a tough time watching my father struggle with this, partially because it's just painful to think of my father wasting away, and partially because I fear that this will happen to me.
It breaks my heart to think of my children growing up without their grampy. And then I start to think of what it's going to be like when he doesn't know who they are, or who I am. It's consuming my thoughts right now. I can't stand the thought of forgetting my children, and I know that early onset Alzheimer’s is a familial disease, and there is a 50 percent possibility of myself having the same gene.
I really don't know what I'm looking for here, there's just no one that I can really talk about this with. It seems that most people don't look at this disease as harmful as it is. Someone hears you have cancer and they're very sympathetic, they hear you have this, they make jokes about you forgetting things.
I guess I'm just looking for suggestions. Ways I can be helpful to my father while still being home for my wife and kids? Ways I can get my mind off of the possibility of this happening to me? Anyone have a similar situation?
Last edited by potfla; 07-05-2011 at 07:46 PM.
Reason: spelling
The following user gives a hug of support to potfla: ninamarc (07-05-2011)
Potfla... what you are probably looking for is for someone to tell you that what you are feeling is normal. This is where we all started... somewhere between shock and disbelief. It takes time for the brain to absorb what we don't want to be true. It is a process much the same as grief... because you are in fact grieving the loss of your father as you know him. There are no wrong emotions and you will work through it in your own time.
As for the genetics, yes you do have a 50% chance of getting that particular gene but you need to know that just because you have the gene doesn't mean you are going to get the disease. Alzheimer's is rampant on one side of my family. My mother, grandmother, great grandmother, several aunts and great aunts as well. The other side has sever vascular problem which resulted in Dad's Vascular Dementia. I refuse to see the doom and gloom. My changes of getting one or the other are just as good as my chances of not getting either. I will be prepared. I have my medical directives, will, and POA done. My daughter knows my wishes. If the time comes we will work through it just as I have and are doing with both of my parents. Until that time comes I intend to live life to the fullest without burdening myself with only the negative. Live each day as if it is precious, not with dread of what might be in the future.
Yes, I went through the same feelings that you did when my Dad was diagnosed. But rather than dwelling on how horrible it was going to be I grabbed every moment of joy I could find. I had some delightful times with Dad long after his diagnosis. Yes, there came a time he didn't know the grand children. There would have been a time that he didn't know me but we lost him before that occurred. We do miss him now but we also keep his memory alive in our hearts, minds, and memories. I share "grandpa" stories with the younger generation as well.
Mom has Alzheimer's and only rarely does she know her girls.... and even more rarely the grand children. Yet we find reasons to laugh and smile and find joy in visits with her.
It takes time but you will find a way to continue to create memories of joy to carry with you and your children.
Is your father local? The best thing you can do is be supportive of his wife and those that are caring for him. You can be a full time father and husband and still visit with your Dad from time to time. You can support him and his wife without losing the rest of your life. Be grateful that she has the ability to care for him and the people around her to help her.
As for you, learn all that you can about the disease. Knowledge is power. Talk to your step sister about your feelings. If she works for an Alz Association then she will be able to help you with your questions, emotions, and feelings. Reach out for help, as you have done here. Remember that it is not something that any of us have ask for but there are ways to get through it.
There are a couple of books that might be helpful as well. Coping with Alzheimer's, A caregiver's Emotional Survival Guide by Frances Bock is a great book. "Still Alice" is a narrative novel written in the first person of the early stages of Early Onset Alzheimer's and will give you a perspective from your father's point of view. "Talking to Alzheimer's" will give you tips on how to talk to your Father as the disease progresses. "Creating Moments of Joy" by Jolene Brackey is one that helped me find the blessings in the midst of this disease. Maybe they would be of benefit to you as well.
I hate you had to find us but glad you did. Hang with us. We have all been in your situation and understand. We get through each day with a little help from our friends So keep typing out your emotions. It helps to get the on papers and know there are those that do understand.
Love, deb
The Following 2 Users Say Thank You to Gabriel For This Useful Post: jdpitt (11-14-2012), KTCasey (08-14-2012)
My spouse was in his mid-50s when diagnosed. His parents had both been from extremely large families, and there was no family history. Our immediate reaction was also that it was a death sentence, and that our life was essentially over. We were afraid, and spent a lot of time thinking about what we were losing (not being available to walk our 10-year old down the aisle someday, not being there for graduations, etc.). We grieved as if he had died.
What we learned over the years is that Alzheimers' is not the end of the world. The fact that it progresses over years and in stages with occasional drop-offs means that the family has time to adjust to each stage. I don't mean to minimze this process. Each loss breaks your heart again. However, you and your family get used to it. You find that you're a member of a huge club. You will be amazed at the number of people who come forward to share their Alzheimer stories with you. It eventually seemed to me that everyone has had a relative, neighbor or friend with this disease.
In all likelihood, you will many more years with your Dad. While he may not be able to advise you on doing your taxes or complex job problems, he will be able to hug you and your kids, will be able to enjoy a 4th of July barbeque or Christmas tree, and will enjoy being with you. His world will get smaller and smaller, but it will always have room for you. You are fortunate that you had him in your life for so long!
My husband is just now entering the stage where we think he does not know us, after about 9 years. He entered a nursing home last year. He still loves milkshakes, pudding and rock & roll music so his life still has joys. He doesn't suffer, as he might have with cancer or other terminal disease. We had many good years with him before his "essence" was lost.
My kids did not have their father as they grew up. Three of their grandparents had died before they were even in school. You eventually adjust to the family that you have, not the family that you don't have. (They all are doing well now, in grad schools and college.) I kow that we will still cry when he is not with us for his children's weddings or other milestones, but we are also at peace with the inevitability of Alzheimers.
Your reactions are very normal. This process takes time, that Alzheimers will give you. Whatever support you can provide to your Dad and his wife will be appreciated through the years.
The Following User Says Thank You to Beginning For This Useful Post: ninamarc (07-07-2011)
You also mentioned your concern about developing the disease yourself. No one can be sure of what will happen and what disease we will develop, whether it's Alzheimers, heart disease or cancer. Something is going to "get" all of us. In the case of Alzheimers, you can keep in mind that (1) even if it's genetic, there's a chance you won't get it; plus (2) if you do get it, it's 30+ years away and there is a ton of research going on that will defeat this disease by then!
hi and vent all you want. i lost my my mom a little over 2 years ago to this disease. the only thing i can tell you is try taking it day by day. it really helps. this is a horrible disease and very hard to understand. i so know how you feel. try to spend as much time with your dad as you can. it goes by so fast. i know its hard, but if you dont think so deeply it makes it a little bit easier. love, debbie
I'm so sorry you had to seek out this board, but I am glad you found it, as it provides a wealth of information and support for people dealing with AD. My dear MIL was diagnosed with AD just about 10 years ago ... I was pregnant with our first child and my husband and I decided to move his parents from their home an hour away to the town we live in so we could help care for them and they could spend more time with us and their granddaughter - My MIL was 69 at the time and my FIL was 83. It was the best thing we every did, since they got to see their granddaughter every day and she got to know them. At that time, we prayed that they might make it long enough for her to remember them. Well, we were blessed with almost 10 years with them! My wonderful MIL did really well for a long time, but the AD did begin to progress more quickly then she suffered a massive stroke in 2007 and was totally incapacitated and needed nursing home care. We found a wonderful facility 10 minutes away from our house, and we continued to care for her husband in his home for another year, until his cancer progressed and he needed NH care, and we were fortunate to be able to place him in the same facility as his wife, who he had missed very much. I think you will find that you will all adapt and adjust your expectations ... it will take time to get used to this diagnosis and that's OK ... you may never accept it because it just isn't fair, but you learn to simplify things and enjoy the happy moments wherever you can find them, and they are there to be found! We lost my MIL a year ago this month, and then my FIL passed away in March of this year. So it has been a challenging journey, and a sad year, but we were blessed with so many wonderful memories and had no regrets, and I just don't think you can ask for anything more than that. Just remember to breath and try not to get overwhelmed and ask lots of questions on here, because these ladies (and a couple of fellas!) have so much to offer to help you through this!
All of us here have experienced what you are feeling. Will I get it...good grief, I hope not but if I dwell on it then I can't enjoy THIS day and I won't give the disease that is claiming my mom any more power over any of us than it already has.
Taking it day by day is the best advice any of us can give you. My mom has had it for 12 or so years now and we are still enjoying time with her. It has been difficult getting to this point, let me be clear about that! But, there are answers out there to get them through the tough times and there will be tough times...but you will still be able to see his smile. My mom now has not a mean bone in her body. She is sweet and though she can no longer walk or move on her own, she still knows us and she still smiles daily. Just talking to her about her grandchildren makes her happy.
It is an awful disease..but it won't all happen overnight. You still have time with him.
Enjoy your family and help when you can with him. Spend time with him.
And let me tell you that if the time ever does come when he doesn't know who you are, he will still know you are someone who cares about him.
You'll learn to roll with this disease as we all have. Stick with us and let us help you the way others have helped us.
Thank you all very much for your stories and advice. I do realize that there is plenty of time with my father left, and certainly plenty of time for my own life as well. It just gets hard to think about what may happen in the future, leaving that kind of burden on my wife and kids, it just breaks my heart. I want to know as much about the disease as I can, and I want to be apprehensive of what the future might bring. At the same time, I find these thoughts consuming me, and I'm an easy going guy and that's what people expect from me. I don't want to appear depressed and make my wife worry, or my friends and family. I'm struggling right now to find a balance, one where I can be involved in helping my father, and still not dwell on what's happening, or what might happen. Ideally, one should always look on the bright side of things, and hope for the best, but I think it would be irresponsible for me to not look at the other side of things too. I do appreciate everyone taking the time to respond to my worries.
Pot it is a struggle but eventually we do find our balance. You do need to be prepared but it's not health to obsess over what may or may not happen. You can make sure the legal work is there. Get your will, living will, power of attorney, and medical directives in order. Live the best life you can live taking care of your physical and emotional well being. Enjoy each moment that comes you way.
One thing I do is to talk to myself. When I find myself obsessing over a topic I literally say to myself... "Well, there you go again!" I do allow myself to process my thoughts for a little while and then I intentionally focus on something else. With a little practice you can take your mind where you want it to go instead of letting your mind take you where it wants you to go! If I let my mind obsess on all that is wrong in my life... I would be a Mad Hatter! I have said before, you are what you think! So I think I am good... and I am!
You also need to know that your emotional turmoil at this time is ok. The emotions you are feeling are yours and you need to feel them... just doing get stuck in them. Your Dad has Alzheimer's. Your friends and family know this.... or you should let them know. When you are in a dark mood just let them know that today I'm not dealing too well. Don't fight that those dark moods because we all have them from time to time. Don't expect yourself to be happy all the time. But also know that those dark moods will pass. Focus on the good moods by enjoying those times rather than focusing on the bad moods because they will pass. Don't worry too much about what others expect of you... be true to yourself, who you are, and what you are feeling. The everybody else will go with you
You will find your balance. It is not irresponsible to enjoy parts of your life while you are dealing with negative. It is not an all or nothing proposition. Be prepared while enjoying your life with your wife and children and at the same time being with your Dad. See your family as the balance to what is happening to your Dad.... and find a way to pull the best out of both situations
It is good that you Dad has good help in his marriage. It is nice to know someone who can help out such as the daughter.
I can see that you feel sad for your Dad. Given early onset Alzheimers, you must feel worse due to the genetic factor.
I would suggest that you continue to be positive raising your family with the young kids... At the same time, it helps to understand early onset AD by looking into the info. online or offline. Not all adult kids get the disease. Certainly early onset AD makes it more possible. But you may not get it.
I would say it is also good that you plan it out for your Dad as well as for youself. Get some legal documents ready for the family in case something happens. But keep it positively - you may not have ALzheimer's.
I know it is heartbreaking to see your Dad declines in a faster rate... I am sorry about that.
Please check in here often - there are lots of support here.
My father-in-law is 90 and has stage 6/7 Alzheimer's and he just stopped walking independently in May - now he needs lots of help to use the walker.
You can try to spend as much time as possible with your Dad. Don't feel guilty if you don't have enough time - you have your own kids too.
Alzheimer's is generally not familial, however, it is when it's early onset alzheimer's.
"Early-onset Alzheimer's disease, also called early-onset Alzheimer's, or early-onset AD, is the term used for cases of Alzheimer's disease diagnosed before the age of 65. It is an uncommon form of Alzheimer's, accounting for only 5-10% of all Alzheimer's sufferers. Approximately half the cases of early-onset Alzheimer's are Familial Alzheimer's disease, where a genetic predisposition leads to the disease. The other incidences of early onset Alzheimer's, however, share the same traits as the 'late onset' form commonly referred to as "Alzheimer's disease", and little is understood about how it starts."
Early onset Alzheimer's does have strong genetic factor. I know there is a family where many siblings all have this disease. The duration of the early onset AD is usually 5 to 10 years.
On the contrary, regular onset Alzheimer's does have some genetic factor but it is like maybe 5% chance. The duration can be 10-20 years.
Still this does not mean everyone has it in the same family.
Some breast cancer does occur a lot in one family also. It depends on what kind of disease.
Potfla... just because you father has it doesn't meant you will get it. It is not a direct dominate genetic disease. Genetics is much more complicated For one thing you have half the genes from Mom and half the genes from Dad. Without genetic testing you don't even know of the half you got from Dad even includes that particular gene that caused the Early Onset Alz. Just because you have the gene doesn't mean you will develop the disease. Even with genetic testing, for the genes they know to look for now, it still doesn't mean you will get the disease. There is way too much that is not know to determine that you will get it.
By the time Mom was my age she had survived breast cancer. By the time Dad was my age he had survived a massive coronary that tends to run in his family. He also had ulcers and his gall bladder removed. But I have none of those issues. Dad had vascular dementia and Mom now has Alzheimer's, as her Mom did, but that doesn't mean I will get either of those. Mom's sister is Alzheimer's free!
We don't know enough about the genetics to determine with any certainty if it is going to happen to a specific person. There are only some statistics then lead to possible genetic transmittal.... but there is nothing definitive to prove this. So am I going to worry about what might be long in the future... NOPE! I will be prepared with legal papers taken care of. I will live the best life I can live, including not worrying about this disease. I will seek diagnosis if symptoms appear. I will not spend the good years between now and then, if it does happen, wrapped up in worry about what might be
The best we can do is to live the best life possible and hope that a cure is found.
In our case, there was absolutely no family history even though my husband came from large families on both sides. My husband was diagnosed in the mid-50s. We asked many of the same questions from three neurologists, including one at a national research center. Obviously, we wanted to know WHY, and whether our children were at risk.
Families have been identified where there is a strong genetic link. Some genetic markers have been identified, and genetic mapping continues. The earlier the diagnosis, the more likely genetic causation. We were told that 65 is not a magic cut-off. Someone diagnosed at age 63 would be labeled as early onset, but might have not have the known genetic markers. Someone diagnosed at age 68 may have the genetic markers. The age of 65 was announced as a statistical break-line many years ago. The number of Alzheimers cases is significantly increasing, and we may hear someday that the age for this label has been dropped below 65. Or the researchers may decide to announce that there's a greater frequency of early-onset cases and leave the break-line where it is. This age is a tool for labeling, that was set by early statistical studies.
There can be a spontaneous mutation of a gene but Alzheimers is not always a genetic disease. Research is continuing into its causes. There are indications that it can be caused by head injuries, a linkage with higher cholesterol, and possibily environmental factors. Theories have abounded, everything from viruses to aluminum (discounted) over the years and the answers are still not clear. If you want to keep up with the current research, I suggest following the Alzheimers' Association page where there are monthly research updates.
If you buy a book, keep in mind that the information will already be several years out-of-date. It can take 2+ years to write a book, and get it printed and published. That doesn't mean that the information is wrong, only that more current information be available. Wikipedia is always interesting, but the information added to it can come from any other sources including these books. It's not a primary research source, which is why it's not an acceptable citation for academic uses. (I love it though, and admit that I've provided some funding in their annual appeal for financial support!)
As Gabriel explained so well, genetics is also a crapshoot with genes coming from both families.
We have to have faith that the cure is coming, and that the researchers will definitiely identify the cause or causes of the disease. Even if we get over the early-onset hurdle and survive all of the other health perils waiting for us, we all have the potential of getting it in our old age.
Last edited by Beginning; 07-14-2011 at 02:57 AM.
The Following User Says Thank You to Beginning For This Useful Post: ninamarc (07-14-2011)
Beginning - This is my first time to post, and it looks like you and I are in a very similar situation. My husband was diagnosed with early onset, atypical alzheimer's in his early 50's. I am in my late 40's and we have a daughter who will be a senior in high school this fall. I would be interested in hearing more about your journey. Right now I'm beginning to have to deal with aggression towards me. Normally I stay pretty calm, but sometimes it's just hard not to loose it! Have you had any of these issues?
My dad was diagnosed with this disease last summer, and I'm very afraid and confused. I'm 30 years old, I'm married and I have two children, a girl who is 22 months old, and a boy who is almost 7 months. I have a very demanding life right now, and I'm scared about my future and unsure of how to maintain a normal relationship with my father.
My father is married and her daughter actually works for a local Alzheimer's organization, so they have good people helping them with this. I have a tough time watching my father struggle with this, partially because it's just painful to think of my father wasting away, and partially because I fear that this will happen to me.
It breaks my heart to think of my children growing up without their grampy. And then I start to think of what it's going to be like when he doesn't know who they are, or who I am. It's consuming my thoughts right now. I can't stand the thought of forgetting my children, and I know that early onset Alzheimer’s is a familial disease, and there is a 50 percent possibility of myself having the same gene.
I really don't know what I'm looking for here, there's just no one that I can really talk about this with. It seems that most people don't look at this disease as harmful as it is. Someone hears you have cancer and they're very sympathetic, they hear you have this, they make jokes about you forgetting things.
I guess I'm just looking for suggestions. Ways I can be helpful to my father while still being home for my wife and kids? Ways I can get my mind off of the possibility of this happening to me? Anyone have a similar situation?
Hi Potfla,
My father had Early onset Alzheimer’s. He was diagnosed at age 52 and passed away at age 60. I was 20 when I lost my Dad, and I'm 23 now. Every step in Alzheimer’s just about kills you, but you rely on your family, your close friends, and your faith if you’re religious. That’s the only way you’re going to make it out alive; you have to have a good support system. As hard as it is to watch someone who you are so close to and love unconditionally slowly dying, you have to accept this fact.
From your intro, it sounds like he is in the beginning stages of the disease. Cherish every moment you have with him. He may seem distant or not understanding things, but he still knows your voice and who you are. Do things that make him happy, play his favorite music…. Just anything that gives him company.
When it comes to him not knowing who anyone is anymore, it’s devastating; it’s like your heart has been ripped out of your chest, but you have to realize this is not your Dad anymore… the disease has taken over and you can only hope that he’s not suffering in pain. However, on some lever I truly believe they still know who you are by your voice and touch. When my Dad was in hospice on his last day, the nurse could tell he was about to pass and told my Mom and me to hold his hand and say “Dad, we’re going to be ok, don’t worry about us, we love you and don’t want you to suffer anymore.” He squeezed our hands before his last breath. That right there told us he knew we were with him all along.
Also, just from a different perspective, look at the situation from this point of view: how scared is he with what’s going on in his body? How scared is he knowing that eventually he’ll no longer know who anyone is? (In the beginning part of Alzheimer’s, they know these things- My Dad would express these things to my Mom.) So the best thing you can do is just be there for him and have a support system for yourself. It’s going to be a rough ride, but you’ll get through it. There are also plenty of books on Alzheimer's that you may find helpful.
Stay strong.
PS- When I look back on it, the thing I regret the most is when I would sometimes get angry at him for not understanding things. This was my fault because I didn't fully understand the disease. So even though his actions sometime might anger you, try not to lash out in anger towards him.
__________________ .Lindy.
The Following User Says Thank You to Lindy77 For This Useful Post: odettetoabird (07-06-2012)
I think it would help if you look at this from another angle. Instead of thinking oh no he is losing this ability and that... Oh it is coming and I may not be ready..., you can try to see what he is now. Look at the moment. The elders with moderate/severe dementia live at the moments. They have bad memory loss so the only sensible thing for them to do is to live at the moment. You need to see if he has comfort care now. Instead of thinking that he is going away from you physically, you can put your shoes in this and see it from his angle and see what can be done for him. Living in sorrow or grief at this point is not helpful. It helps everyone if you can cherish the moments and live for it. Sometimes you will find some joy at times - I mean sometimes you would laugh at his logic and etc. Seriously, given the stress, this helps. 5 years is a long time. So take it one step at a time. Live for the moments.
Lindy: What a wonderful post! Thank you. I'll get my kids to read it. I wish now that we could go back to those early years after my husband/their Dad's early-onset diagnosis when we'd go out for ice cream or watch tv ...just the little things, that made him happy and when we could still be a family together. It's a blessing that your Dad was able to give you his good-bye. Hugs.
Lindy: What a wonderful post! Thank you. I'll get my kids to read it. I wish now that we could go back to those early years after my husband/their Dad's early-onset diagnosis when we'd go out for ice cream or watch tv ...just the little things, that made him happy and when we could still be a family together. It's a blessing that your Dad was able to give you his good-bye. Hugs.
You're welcome. Alzheimer's is an awful disease, on both sides- for the one who is suffering, and for the people that have to watch their loved ones slowly decline.
But you're right, it is the little things that mean the most and make them happy.
Soonerfan - I was fortunate that my DH never became aggressive towards us (only towards his other caregivers, starting with angry faces, cursing and finally to pushing people). He was frustrated and frightened, losing the ability to talk and the ability to control emotions.
For most of the 7 or so years that we kept DH home, he was very childlike and passive with us. This was very different from his prior personality, which had been pretty Type A.
You end up trying different things. One week you might leave the room and wait for it to blow over. The next week you might agree with everything and be apologetic. Or you could suggest a car ride to get ice cream. Or turn on his favorite music. Or consider talking to the doctor about available medications, although they don't always work the way that you'd think with Alzheimers' patients.
As the patient loses the ability to speak and carry on conversations, you become more and more attuned to nonverbal cues and moods. It's a slow and adaptive process, with many wake-up calls (the first time he couldn't put on his seat belt, or when he tried to open his car door when the car was moving...the first time he wandered away when I was unloading groceries...the first time we realized that he was agreeing but didn't understand our words...the first time he urinated on the floor). Switching from zippers and buttons to sweatsuits. Switching from shoes that tie, to shoes with velcro, to slip-ons. Switching to an electric razor. Making the podiatrist appointment when he you discover he stopped cutting his toe-nails. Finding that he put the silverware in the garbage, or broke the lamp while trying to get it to work since he didn't recognize the switch anymore.
Discovering that going to stores, movies, family events, vacations or other places made him worse. Quiet and routines helped him to function best. Of course, this also isolated us.
So keep typing out your emotions. It helps to get the on papers and know there are those that do understand.
