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While not exactly "early onset" my Husband was 63 when he was diagnosed with Alzheimer's. He survived for 12 years. (I hesitate to use the phrase he lived for 12 years. ) I was able to keep him home but he was compliant and he was never violent. I did have help from caregivers. He was a Veteran so I got some help through the VA and I got him onto Hospice early. He was on Hospice for almost 3 years. (he had had a fall and broke his hip. He did well with surgery and rehab but it was after that that I contacted Hospice.) As long as there is a "continued, documented decline" a person can remain on Hospice. You do not mention your husbands age but see what services you and he may qualify for through your local Senior Service Center and if he is a Veteran see what benefits he may qualify for through the VA. Also look for an "in person" Support Group. This forum is wonderful but you will need people contact. A few things.... Learn to ASK for help Learn to ACCEPT help Get caregivers. The sooner the better so he gets used to someone other than you helping him. If there is an Adult Day Program get him involved. It will help you and it will help him. If he is a Veteran contact your local Veterans Assistance Commission and see what benefits he may be entitled to. And YOU may be able to get paid to care for him. Depending on where and when he served he might be entitled to a little help or a LOT!
OH...if you have not yet talked to an Elder Care Attorney do so ASAP. make sure you have all the paperwork needed to be able to make the decisions you will need to.
He is 63 years old. How long before your husband was unable to do daily tasks? He is in a drug trial right now. They say he is in the early stage. How quickly can I expect him to decline and what does that look like? Doctor told me "if you want to travel, there is a 3 year window to do it before it's not possible." Was that the case with your husband? Thank you for replying.
Early onset Alzheimer's as I'm sure you've already been told can go on for 20+ years, so it's best that you get your ducks in a row now. Things to get in order, wills, trusts, POA's, MOST or POLST forms, advance healthcare directives and the like. Then get yourself educated on this horrific disease as knowledge is power and it will better prepare you for what lies ahead. The book The 36 Hour Day is great place to start, and Teepa Snow(a dementia expert) has a lot of great videos on YouTube, along with many books that she's written as well. Then of course find a local caregiver support group that you can attend in person(preferably)or on Zoom. You will benefit greatly from one and know that you're not alone. My local caregiver support group literally saved my life when I was at my wits end while caring for my late husband who had vascular dementia. You can also look into the Adult Daycare Center in your area, as they do a fabulous job with folks with any of the dementias. You can bring your husband there up to 5 days a week and 8 hours a day. They will feed him breakfast, lunch and a snack and will have daily entertainment to keep him occupied. They also offer a "spa" day for those folks who are having a hard time getting their loved one to bathe or shower. And if money is an issue they do offer financial assistance to help out. Make sure too that you're taking time for yourself and doing things that you enjoy as you matter too in this equation. 40% of caregivers caring for someone with dementia will die before the one they're caring for from stress related issues , so you can see that self care is of the outmost importance. And of course most importantly is that you just enjoy whatever time you may have left with your husband as there will come a day when you will wish for just one more day with him. You're going to be ok. Will it be hard? Yes! It will be the hardest thing you've ever done, but you will come out of it a stronger, more compassionate and understanding person when it's all said and done. May God bless you and keep you as you travel this very difficult journey with your husband.
I just drove past our little town's Senior Center and the promo sign said there was a Caregiver's Support Group meeting. Make sure to check on senior centers and churches for support groups and Elder Care ministries.
Maybe join Nextdoor.com and ask for resources from your actual neighbors in your community -- I find it a wealth of information and help (most of the time).
Lisa, One of the reasons that I dislike, or don't take much stock in "stages" is that I think my husband was able to do things that he really should not have been able to do. On the other hand he was unable to do some things when he should have been able to still do them. I truly think that it is whatever part of the brain is damaged. I also think that my husband had Vascular dementia as well as the Alzheimer's. With the Vascular dementia there are little "mini strokes" that occur. My husband would go from being able to do something on Monday and by Tuesday he could not do it. He literally overnight could not (would not?) walk. the facilitator of the Support Group that I now co run always said..."If you have met 1 person with dementia...you have met 1 person" the thought being that each person is different and the dementia effects each person differently. There are people that get violent, ones that see their reflection in a mirror and think it is a stranger and want mirrors removed, some people get over sexed, and some that talk and talk, others like my husband become non verbal.
If there are things that you and your husband want to do, I agree do them now while you can. Who knows what will happen next month, next year let alone 3 years from now.
As I have told people Take joy in what he can still do mourn what is lost but do not dwell on it there are more losses to come. Be kind to yourself. If you are doing all that you can for him that is all you or anyone can ask of yourself. NEVER promise that you will not place him in a facility that can manage his care. You never know what might happen. Making a decision like that is not an easy one to make and if you are having to make that decision then it is not a spur of the moment one. I based my decision on safety. If it was no longer safe for HIM for me to care for him at home or if it was no longer safe for ME to care for him at home I would have had to place him. Thankfully he was compliant and I did not have to make that decision. I also had the help of Hospice with all the equipment that I needed.
I forgot to add..I also had my husband in a drug trial. I have no idea if that is why he did as well as he did for as long as he did. I will never know....and does it really matter now answer to that is no.
My husband got Parkinson, no dementia. For Parkinson they treat first 5 years as honeymoon phase and although we were not in denial as we had every possible paper work and plan A, B ,C done, but we ignored this horrible disease and we traveled the world and experienced as much as we could. Even more than some people as we took some 20 trips, had lots of experiences, friends, socializing, he took some meds, exercised daily, ate right etc. But we refused to be limited and sit around and think what ifs and endless possibilities. Because we knew there was not what if only when it is going to progress. And after 5 or 6 years everything changed. So by all means have important papers done, but enjoy 5 or more good years together.
I'm so sorry you are dealing with this. I am not dealing with this currently but did watch my FIL go through it, starting in his early 60s too. It was a lot for my MIL to care for him as he declined.
I have a mom (81) and a MIL (97)with dementia. I wonder if my hubby is dabbling with early onset. Or is it I'm just so surrounded by it that I see it everywhere. I'm not ready to push him to get tested but am keeping my eyes open and wanting to start writing down examples to see patterns. He has ADHD too so some of his behaviors can come under that umbrella.
Anyhow, I would try to spend time together and do fun things and travel now while he is in the early stages. It gets too difficult as they progress. I stopped taking my mom on trips 2 years ago. It just was not longer fun for anyone.
As someone else said, definitely get all your paperwork in order while you still can. Is he still considered competent? I am assuming so.
I love herbal and natural remedies. Google it and see what things you might want to do to improve your diet and exercise that might even slightly improve his current cognition. Going for walks is great for all of us. A healthy diet with less sugar and more veggies and fruits could help. I talked to a caregiver that gave her dementia patient coconut oil daily and they went from not knowing what their clothes were to independently dressing themselves. That's a huge leap, IMHO.
Come back here and post as often as you would like. You are not alone and there is a lot of excellent advice to be found here.
I read about benefits to coconut oil as well. Interesting, I wonder if countries which use coconut oil regularly have less dementia. I think so as I recall reading about SA.
Alz.org is a wonderful website with lots of support and an 800 phone number to talk to people there with questions. They also have a forum like Agingcare dedicated to AD.
Above is a link to an in person Alzheimer's support group that meets the second Tues of every month in West Chester, PA. Call the number to double check.
https://www.alz.org/pa
Above is a link to the Alzheimer's association website for the greater PA area.
Above is a link to a fascinating autobiography of an Alzheimer's sufferer, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's.
"Living In The Labyrinth is the story of how one woman found the strength and the courage to cope with a devastating disease that has afflicted five million Americans. Far from being an exercise in self-pity or a standard autobiography, this is an unflinching and ultimately uplifting look at a debilitating illness from the inside out.
“Somewhere there is that ever-present reminder list of what I am supposed to do today. But I cannot find it. I attempt to do the laundry and find myself outside, in my backyard, holding soiled clothes. How did I get here? How do I get back?”
Only forty-five when she first began to struggle with the memory lapses and disorientation that signal the onset of Alzheimer’s, Diana Friel McGowin has written a courageous, stirring insider’s story of the disease that is now the fourth leading killer of American adults.
Diana’s personal journey through days of darkness and light, fear and hope gives us new insight into a devastating illness and the plight of its victims, complete with a list of early warning signs, medical background, and resources for further information. But Diana’s story goes far beyond a recounting of a terrifying disease. It portrays a marriage struggling to survive, a family hurt beyond words, and a woman whose humor and intelligence triumph over setbacks and loss to show us the best of what being human is."
Understanding the Dementia Experience: Thoughtful Dementia Care by Jennifer Ghent-Fuller on Amazon is another great book written in plain English.
My husband is 94 (I'm 87), so what we are experiencing--Alzheimer's or some other form of dementia--could hardly be viewed as "early onset". He is still functional as to ADLs but has lost some ability to deal with IADLs (executive function, planning). He currently has insight and recognizes that his short-term memory is not what it used to be. He will occasionally lose track of what day it is, dates, times, etc., or how many times he has told the same story or made the same comment. We have been fortunate so far.
We have not sought a formal diagnosis. At our ages I am unsure that there would be anything to be gained by a formal diagnosis. Our situation is quite different from that of OP since there's a significant age difference. We are both experiencing the physical debilitation that comes with old-old age, although I think he's in better shape than I am. (I need a new spine--yeah, good luck with that!)
There is a LOT of VERY useful information on this website, and I will be using it as our situation evolves. I hope that OP will find it useful as well.
Lisa, I am so sorry that your family is facing this awful diagnosis. May The Lord give you courage, wisdom and strength for this difficult time.
We had a poster that was diagnosed with early onset, John was 57 years old, he came here to tell us what he and his family were doing in the lead up to him no longer being "there".
1st off, he put ALL assets in his wife's name alone. This was to ensure her welfare later.
2nd, he asked his family to put him in a facility at least 100 miles from their home. He didn't want them to forgo their lives to visit him all the time when he no longer knew who they were.
3rd, he and his wife decided to do some dream vacations while he was still able to be with her and both enjoy the journey.
4th, they did the research, changed diets and added supplements to counter the brains deterioration. Did it help? Who knows but, I know being productive is definitely beneficial and that was accomplished.
He did everything he could, as long as he could. His family kept a close eye on him to ensure he wasn't in any danger or causing potential danger. He accepted his diagnosis and he was an active participant in his care. I think it is the best one could hope for with this type of diagnosis.
I have not seen John on the forum for a long time, so I assume his journey has changed at this point, he is probably to far advanced to even remember this forum but, I really appreciate the advice and him sharing his journey with us.
Remember, you matter too. You and dear hubby need to face and deal with the fact that his life and yours will not be what you planned. You need to get the legal aspects dealt with sooner than later. You need a good certified elder law attorney to guide you through your specific situation. You do not want to find out to late that you guys could have protected you from the expense of this disease.
Great big warm hugs! I can not imagine how hard all of this is for you.
Thank you for that information. I am the beneficiary to all our assets - is that the same thing as having all the assets in my name alone? We put all we could into a trust many years ago and have POA and DNR in place. Do you suggest we still see an "elder attorney?" I have never heard of that. Thank you in advance for any replies to these questions.
An elder care attorney specializes in legal matters affecting older adults, such as estate planning, long term care planning, guardianship, Medicare/Medicaid issues, and elder abuse cases. To find one, you can start by asking for referrals from friends, family, or professionals like financial advisors or healthcare providers. You can also search online directories or contact your local bar association for recommendations.
My wife (75) is also has Alzheimer's and I am her caregiver. I have found that getting the right meds to keep anxiety down is essential. Your neurologist may be able to arrange in house visits to help out. The Alzheimer's Assoc. has outings at the Botanical Gardens for Caregivers and patients. 210-822-6449. You can call me anytime. Mike 817-907-0161. Best Wishes,
My father passed from Alzheimer’s after a very long journey. I started volunteering with the Alzheimer’s Association and it has been very therapeutic for my healing. It is a wonderful community and very supportive. I suggest you get in touch with your local chapter, they have many resources for caregiver support and education. Start at www.alz.org
LisaMarie, My husband was diagnosed at 67. He is 74 this month. He still manages his own hygiene and dressing, toileting, eating. This level of independence is helpful but leads him to believe sometimes that he is ok on his own. I manage everything else to make it possible for him to enjoy independent functioning in a supportive, safe environment. It can be overwhelming at times. However, I also feel some pride and satisfaction in managing all that I do, which makes it possible for him to be at home. This is a feeling I did not expect. I was angry and resentful for quite a while. I was living with his alzheimers for years (before diagnosis) and did not know that was a primary cause of his indifference to my wants and needs.
I want to echo advice from another forum member for you to begin ASAP getting him (and you) accustomed to having others provide direct care for him. I have found it to be a difficult adjustment. My husband defaults to relying on me and after 48 years I automatically respond. For me, I get out of the house at least twice a week and leave husband and caregivers to work on their relationship. If i have nothing else scheduled, I will go to the library and read or get a latte and walk in our urban park nearby. It is a lifesaver, I think, for all involved.
This may be a very long journey for you. Please take care of yourself. Do you two have children? If yes, I strongly encourage you to involve them. Keep them abreast of what is happening. If something should happen to prevent you from administering his care, they should be aware of details in order to be able to step up. One of our sons has actually expressed gratitude for the opportunity to be informed and to assist. If no children, think about who could step in for you and keep that person informed.
I am not currently in a local support group but I am trying a new one next month. I am in a book club that I have been with for 15 years. Also, I am in a dream interpretation group. (I am a retired therapist.) One of my friends in the Dream group recently lost her husband after 18 years with dementia. Her friendship has been priceless.
I share all of these extraneous details of my life because I hope you will continue to live your life. It will not be as expected but then life never turns out as planned. I wish for you peace and wisdom in your choices.
Deb, thanks for sharing what you are going through. It sounds like my husband is about the level where your husband is. I have a good friend that is willing to come stay with my husband to give me a break but he thinks I’m hiring him to babysit him. I told him he’s not babysitting him, he’s just going to come over in case he needs something when I’m gone. He knows him well. How did you get your husband to feel comfortable with someone coming into your house to sit with him when you decided to hire help?
My husbands dementia is starting to progress. Although, we just found out he has severe sleep apnea. It’s a possibility that this is feeding into the progression of it. He stopped breathing 208 times within a 2 hour period. You may want to have your husband do a sleep session to see if he has sleep apnea. I felt he had it but I didn’t know it was that severe. Lack of oxygen to the brain can play a huge roll in their condition.
Dont be surprised that as memory decreases, he will pull off the mask overnight and there will be nothing you can do about it short of staying awake all night
Hi Lisa, when you say early onset Alzheimer’s, do you mean age wise or do you mean is in the first stage? I only ask this question because my husband who is 82 is in the beginning stages of Alzheimer’s. He was diagnosed in July officially and as I describe it, my life is a little bit in limbo right now. He also has a comorbidity of COPD, so that limits his mobility. He is still able to read the newspaper would be left alone while I golf he does not eagerly take care of his personal hygiene. I think that has more to do with it. The COPD, a showering does create issues with his tubing as he is on oxygen 24 seven. I am currently in a support group is taking me three of them to find one that I’m comfortable with it. I’m comfortable with a facilitator, which is why I have chosen to stay in this particular one through them. I am learning that it is better to bring in assistance earlier, even if it’s not needed. My struggle now is to convince my husband that he is not having a what he described as a babysitter. While he certainly is not anywhere near the wandering stage. He does like to to prepare his own lunch or even thinks about it so I would like to have that person here when I’m not so that he will eat. I’m also going to have to move in the direction of getting someone else to help him with his shower while I am doing it. It is somewhat challenging. I would encourage you to join a support group or find someone that you’re close enough to to talk about this as I was quite surprised or comforted I should say when I begin speaking to others in a similar situation, and having them describe the behavior of their loved one with this even early onset stage of the dementia. It validates that it is, indeed the dementia, even though you have an official diagnosis, but it also Helpful do you know that what your loved one is experiencing is unfortunately part of the process. my husband and I are still able to have a good conversation about current events about our family enjoys having family visits. He is anxious when we go out in crowds so I try to limit that but I do enjoy getting out for dinner and he knows that is aware of it, and he is trying his best to enjoy that experience as well. While there a lot of similarities in this disease each person brings their own life experience to it as well. I wish for you the best, and to find the best resources for YOU and for your husband. Although it’s only been a part of my life for a little less than a year, it is a roller coaster, and sometimes when we are sitting watching television together it is hard for me to believe that he is on this journey or should I say we. Thanks to all read this and to all of you going through this. I hope you find the support that you’re looking for.
My name is Kim and my husband was diagnosed with Neurogenic Cognitive Decline when he was 55 years old. He had the symptoms many years prior to dx. He needs cues and supervision for most of his daily activities. He is still walking and he is able to use the bathroom on his own. He hasn't held a job or driven for 2 years. He is pleasantly confused, and I am thankful fir that. It has been quite the journey for both of us. Lots of ups and downs, but mostly downs. If you would like to correspond with me send me a private message for my email.
Absolutely I am in the same Position & it can be a daunting task. Keep abreast of any & all info available. Contact A place for Mom as it includes husbands as well. Check with all available facilities in your area as you don’t know what the future holds. Keep as normal a home life as you can. Practice patience, patience, patience! Keep in touch with your Primary Care Physician & discuss the medications which possibly slow the disease’s progression. If your husband gets anxious also look at the possibility of a calming medication. Carry on conversations despite the fact that he won’t recall them. Keep a sense of humor & try to laugh as much as you can. Let him be as independent as he is capable. Keep socializing. Good friends will be helpful & understanding. Keep him physically active. Hope this helps!
What a good answer, Butch. It covers all of it, esp. patience and a sense of humor. I'm in the same position and all the things you mention are necessary and important. Best of luck to you!
What age was your mom diagnosed with Alzheimers? My husband is 62 and had to retire at the end of 2022 because he could not keep up with the pace of work - and that was before we even knew he was sick. It all made sense when the doctor told us...so much of the past 5 years came into focus for me. He had hearing issues he blamed on me and had (still has) the most dramatic mood swings. He falls asleep often during the day despite having had 8+ hours of sleep the night before. He even falls asleep in a loud movie theater. He is in denial even now and tells people he has "memory issues" and will not talk seriously with me about it. He has not told his 5 siblings or any of his close friends. Only our adult kids know. I want to put plans in place but how do you do that with someone who can't even say "I have early onset Alzheimers...?"
My husband was diagnosed at the age of 64 in 2017 with Frontotemporal Dementia and Mild (now Moderate) Cognitive Impairment. I had been documenting his behavior for five years prior to diagnosis and had plans in place to leave him. He was diagnosed one month before I was going to leave. The diagnosis changed my plans and gave me understanding of why he did the things he did. Some folks with dementia are compliant. My husband is not. For example, he is still sitting here three hours later furious that I did not bring him McNuggets for lunch from McDonald's (he asked me to bring him a double cheeseburger or a whopper when I left the house, so I bought both). He launched into a tirade about what a terrible memory I have and that I don't listen to him. Why would he ask for a double cheeseburger or whopper when he wanted McNuggets? (Yep, I went to McD and BK in hopes of keeping the peace.) And on it went. I keep silent (because reacting is a big trigger, so no reacting) and just let him rage. If I become unsafe, I have exit strategies, plus our son lives here. He picked up on what was happening and sat in the living room for a bit. That's just one snippet of my daily life.
What I have learned is this: You cannot reason with a broken brain.
If you try, all you will do is fight. It isn't worth it.
I also highly recommend joining an in-person caregiver support group. You’ll gain so much useful resource information, and as importantly, gain much emotional support by realizing you are not alone in this journey. Contact your Area Agency on Aging and the Adult Service Unit of your area Department Social Services(also called Human Services in some areas) and ask if they can advise you about local respite care programs, adult daycare, etc. You can find numbers for those agencies by contacting eldercare.gov. The federal government has some very helpful, free printed info you can order online- search NIH-NIA Alzheimer’s/dementia. 3 excellent, large guides are: caring for a Person with Alzheimer’s Disease The Caregiver’s Handbook Advance Care Planning. They also gave some great tip sheets and pamphlets. Get acquainted with Teepa Snow, a renown dementia expert/trainer with loads of free videos and information as well as paid training. I agree with suggestions about lining up help sooner than later- to get him used to an alternate care provider and to give you a break. Don’t let his resistance or refusal stop you- he will get used to it over time. Best of luck on your journey ahead- it may be very challenging, but tackling it a day, or an hire, at a time will help you survive. Nancy A. in Virginia Beach
LisaMarieA: The horrible disease of Alzheimer's claimed my dear sister in law's life. You have come to the right place, the AgingCare forum where a ton of longtime posters should offer you support on the disease. You could garner knowledge on it by reading such publications as the book, 'The 36 Hour Day.'
There are so many going thru this. One place that can be helpful is to call the Alzheimer’s association. They have a 24/7 line. They were so very helpful to my sister and I in trying to help my bIL take care of my other sister. All of this long distance too. Go to www.alz.org. And click on menu. And you can go from there.
I don’t know where you are located but the Alzheimer’s Association can help you find recourses in your area.
there are support groups. Even some online. There are books. One very small book called “I Care” is excellent. We were given this book at a dementia group event. In our area we have something called a Memory Cafe for those with dementia and their caregiver. from 10-2 one day a week with music and pet therapy, crafts, lunch, and exercise for those with dementia while the care givers have their own time of support. Plus some other appropriate activities. There may be things just like this elsewhere. You could contact your local Office on Aging and they could tell you what is available. you are not alone. There is much support out there for you. I pray you will find something that helps.
So sorry to hear ...I have been through this with my mom and mother in law and father in law.I have fear that I could be dealing with this with me or my husband as we are in our mid 60s.This is a great place to talk with others and I will hope youwill take some of the great advice given and share your feelings. I hope you will find support because it is so important.
Lisa - don't worry about him admitting he has dementia. It's probably not going to happen and it really doesn't matter. You know he has it, as do his children, and that's all that matters. If other people need to know, you can quietly pull them aside and tell them in confidence.
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He survived for 12 years. (I hesitate to use the phrase he lived for 12 years. )
I was able to keep him home but he was compliant and he was never violent.
I did have help from caregivers.
He was a Veteran so I got some help through the VA and I got him onto Hospice early. He was on Hospice for almost 3 years. (he had had a fall and broke his hip. He did well with surgery and rehab but it was after that that I contacted Hospice.) As long as there is a "continued, documented decline" a person can remain on Hospice.
You do not mention your husbands age but see what services you and he may qualify for through your local Senior Service Center and if he is a Veteran see what benefits he may qualify for through the VA.
Also look for an "in person" Support Group. This forum is wonderful but you will need people contact.
A few things....
Learn to ASK for help
Learn to ACCEPT help
Get caregivers. The sooner the better so he gets used to someone other than you helping him.
If there is an Adult Day Program get him involved. It will help you and it will help him.
If he is a Veteran contact your local Veterans Assistance Commission and see what benefits he may be entitled to. And YOU may be able to get paid to care for him. Depending on where and when he served he might be entitled to a little help or a LOT!
OH...if you have not yet talked to an Elder Care Attorney do so ASAP. make sure you have all the paperwork needed to be able to make the decisions you will need to.
There are some here dealing with/or having dealt with what you are, and I hope you get more answers.
Let the docs know you need support; speak with social workers for guidance toward help.
I sure wish you luck.
Things to get in order, wills, trusts, POA's, MOST or POLST forms, advance healthcare directives and the like.
Then get yourself educated on this horrific disease as knowledge is power and it will better prepare you for what lies ahead. The book The 36 Hour Day is great place to start, and Teepa Snow(a dementia expert) has a lot of great videos on YouTube, along with many books that she's written as well.
Then of course find a local caregiver support group that you can attend in person(preferably)or on Zoom. You will benefit greatly from one and know that you're not alone.
My local caregiver support group literally saved my life when I was at my wits end while caring for my late husband who had vascular dementia.
You can also look into the Adult Daycare Center in your area, as they do a fabulous job with folks with any of the dementias. You can bring your husband there up to 5 days a week and 8 hours a day. They will feed him breakfast, lunch and a snack and will have daily entertainment to keep him occupied. They also offer a "spa" day for those folks who are having a hard time getting their loved one to bathe or shower.
And if money is an issue they do offer financial assistance to help out.
Make sure too that you're taking time for yourself and doing things that you enjoy as you matter too in this equation. 40% of caregivers caring for someone with dementia will die before the one they're caring for from stress related issues , so you can see that self care is of the outmost importance.
And of course most importantly is that you just enjoy whatever time you may have left with your husband as there will come a day when you will wish for just one more day with him.
You're going to be ok. Will it be hard? Yes! It will be the hardest thing you've ever done, but you will come out of it a stronger, more compassionate and understanding person when it's all said and done.
May God bless you and keep you as you travel this very difficult journey with your husband.
Maybe join Nextdoor.com and ask for resources from your actual neighbors in your community -- I find it a wealth of information and help (most of the time).
I truly think that it is whatever part of the brain is damaged.
I also think that my husband had Vascular dementia as well as the Alzheimer's. With the Vascular dementia there are little "mini strokes" that occur. My husband would go from being able to do something on Monday and by Tuesday he could not do it. He literally overnight could not (would not?) walk.
the facilitator of the Support Group that I now co run always said..."If you have met 1 person with dementia...you have met 1 person" the thought being that each person is different and the dementia effects each person differently.
There are people that get violent, ones that see their reflection in a mirror and think it is a stranger and want mirrors removed, some people get over sexed, and some that talk and talk, others like my husband become non verbal.
If there are things that you and your husband want to do, I agree do them now while you can. Who knows what will happen next month, next year let alone 3 years from now.
As I have told people Take joy in what he can still do mourn what is lost but do not dwell on it there are more losses to come.
Be kind to yourself.
If you are doing all that you can for him that is all you or anyone can ask of yourself.
NEVER promise that you will not place him in a facility that can manage his care.
You never know what might happen.
Making a decision like that is not an easy one to make and if you are having to make that decision then it is not a spur of the moment one.
I based my decision on safety. If it was no longer safe for HIM for me to care for him at home or if it was no longer safe for ME to care for him at home I would have had to place him. Thankfully he was compliant and I did not have to make that decision. I also had the help of Hospice with all the equipment that I needed.
I forgot to add..I also had my husband in a drug trial. I have no idea if that is why he did as well as he did for as long as he did. I will never know....and does it really matter now answer to that is no.
For Parkinson they treat first 5 years as honeymoon phase and although we were not in denial as we had every possible paper work and plan A, B ,C done, but we ignored this horrible disease and we traveled the world and experienced as much as we could. Even more than some people as we took some 20 trips, had lots of experiences, friends, socializing, he took some meds, exercised daily, ate right etc. But we refused to be limited and sit around and think what ifs and endless possibilities.
Because we knew there was not what if only when it is going to progress.
And after 5 or 6 years everything changed.
So by all means have important papers done, but enjoy 5 or more good years together.
I have a mom (81) and a MIL (97)with dementia. I wonder if my hubby is dabbling with early onset. Or is it I'm just so surrounded by it that I see it everywhere. I'm not ready to push him to get tested but am keeping my eyes open and wanting to start writing down examples to see patterns. He has ADHD too so some of his behaviors can come under that umbrella.
Anyhow, I would try to spend time together and do fun things and travel now while he is in the early stages. It gets too difficult as they progress. I stopped taking my mom on trips 2 years ago. It just was not longer fun for anyone.
As someone else said, definitely get all your paperwork in order while you still can. Is he still considered competent? I am assuming so.
I love herbal and natural remedies. Google it and see what things you might want to do to improve your diet and exercise that might even slightly improve his current cognition. Going for walks is great for all of us. A healthy diet with less sugar and more veggies and fruits could help. I talked to a caregiver that gave her dementia patient coconut oil daily and they went from not knowing what their clothes were to independently dressing themselves. That's a huge leap, IMHO.
Come back here and post as often as you would like. You are not alone and there is a lot of excellent advice to be found here.
Best of luck.
Interesting, I wonder if countries which use coconut oil regularly have less dementia. I think so as I recall reading about SA.
https://www.thehickman.org/in-person-dementia-caregiver-support-group/
Above is a link to an in person Alzheimer's support group that meets the second Tues of every month in West Chester, PA. Call the number to double check.
https://www.alz.org/pa
Above is a link to the Alzheimer's association website for the greater PA area.
https://www.amazon.com/Living-Labyrinth-Personal-Journey-Alzheimers-ebook/dp/B005FY6QKO/ref=sr_1_1?crid=DDXTQR9LVEV1&dib=eyJ2IjoiMSJ9.LkIkcv9xwPxTEZHBnIGkwlMe3juH-zJCt9HkqPi1KvDrK4G4L3xMG7O2WlFTIcWPSQ286Bmg92B2s5HYT8ZOncEvQfsdQd2rBGfP6xAfQVaHi-8yoG9SBnCdosjbieQegYadX8v-_Zugo9_v5Z8d_Ml6_o5aRXUbnygkI6jgfHFN5BVvxYlu9jea5nSR0XVzVnj3fleKu7rzXV3jJ0_bOJC7g4XLw7GMUnbCBo_T23o.tYMQaKmeDjj7vj6OM9Jf2V7qoY236HCiV2R8-JIYU1k&dib_tag=se&keywords=alzheimer%27s+autobiography&qid=1714424417&sprefix=alzheimers+autobiography%2Caps%2C337&sr=8-1
Above is a link to a fascinating autobiography of an Alzheimer's sufferer, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's.
"Living In The Labyrinth is the story of how one woman found the strength and the courage to cope with a devastating disease that has afflicted five million Americans. Far from being an exercise in self-pity or a standard autobiography, this is an unflinching and ultimately uplifting look at a debilitating illness from the inside out.
“Somewhere there is that ever-present reminder list of what I am supposed to do today. But I cannot find it. I attempt to do the laundry and find myself outside, in my backyard, holding soiled clothes. How did I get here? How do I get back?”
Only forty-five when she first began to struggle with the memory lapses and disorientation that signal the onset of Alzheimer’s, Diana Friel McGowin has written a courageous, stirring insider’s story of the disease that is now the fourth leading killer of American adults.
Diana’s personal journey through days of darkness and light, fear and hope gives us new insight into a devastating illness and the plight of its victims, complete with a list of early warning signs, medical background, and resources for further information. But Diana’s story goes far beyond a recounting of a terrifying disease. It portrays a marriage struggling to survive, a family hurt beyond words, and a woman whose humor and intelligence triumph over setbacks and loss to show us the best of what being human is."
Understanding the Dementia Experience: Thoughtful Dementia Care by Jennifer Ghent-Fuller on Amazon is another great book written in plain English.
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/1480007579/ref=tmm_pap_swatch_0?_encoding=UTF8&dib_tag=se&dib=eyJ2IjoiMSJ9.aFJiwHMacJpUiYlb3LLUgU6crjjEPIt-OA4CmNDIj8QLDY1qSF71632QVN1b6yVlQavu0wNyuBNOAX6rhoL9gULgOOEsVcY16wjLzR1eqnuV5RLDQDvvho9HQL4oU08XOCUTKTsMOTdAt0BOQlPvaatw7wPEHD7JYJHEepgMrf5pX52pUm6BkysfajbIrUVFrJDdwwjcEKh9cy2-At04btGIUDInbuFEh9gzdG46p7M.e8vrFMCOFvafGrP-WAItj6ygT1rqzrpTfCh-MsSaeY8&qid=1714424689&sr=8-6
Stay connected to us here because we've been down this road MANY of us and can relate.
Best of luck to you.
We have not sought a formal diagnosis. At our ages I am unsure that there would be anything to be gained by a formal diagnosis. Our situation is quite different from that of OP since there's a significant age difference. We are both experiencing the physical debilitation that comes with old-old age, although I think he's in better shape than I am. (I need a new spine--yeah, good luck with that!)
There is a LOT of VERY useful information on this website, and I will be using it as our situation evolves. I hope that OP will find it useful as well.
We had a poster that was diagnosed with early onset, John was 57 years old, he came here to tell us what he and his family were doing in the lead up to him no longer being "there".
1st off, he put ALL assets in his wife's name alone. This was to ensure her welfare later.
2nd, he asked his family to put him in a facility at least 100 miles from their home. He didn't want them to forgo their lives to visit him all the time when he no longer knew who they were.
3rd, he and his wife decided to do some dream vacations while he was still able to be with her and both enjoy the journey.
4th, they did the research, changed diets and added supplements to counter the brains deterioration. Did it help? Who knows but, I know being productive is definitely beneficial and that was accomplished.
He did everything he could, as long as he could. His family kept a close eye on him to ensure he wasn't in any danger or causing potential danger. He accepted his diagnosis and he was an active participant in his care. I think it is the best one could hope for with this type of diagnosis.
I have not seen John on the forum for a long time, so I assume his journey has changed at this point, he is probably to far advanced to even remember this forum but, I really appreciate the advice and him sharing his journey with us.
Remember, you matter too. You and dear hubby need to face and deal with the fact that his life and yours will not be what you planned. You need to get the legal aspects dealt with sooner than later. You need a good certified elder law attorney to guide you through your specific situation. You do not want to find out to late that you guys could have protected you from the expense of this disease.
Great big warm hugs! I can not imagine how hard all of this is for you.
An elder care attorney specializes in legal matters affecting older adults, such as estate planning, long term care planning, guardianship, Medicare/Medicaid issues, and elder abuse cases. To find one, you can start by asking for referrals from friends, family, or professionals like financial advisors or healthcare providers. You can also search online directories or contact your local bar association for recommendations.
But I needed to tell you, how sad I am for anyone that is going or has gone through this.
At an older age it's expected, and more expected every year they get older.
But someone young, just seems so darn unfair.
Get help you need, and vent here anytime.
Keep us posted, I'd like to here more of your story, and it will educate others.
that getting the right meds to keep anxiety down is essential. Your neurologist
may be able to arrange in house visits to help out. The Alzheimer's Assoc. has outings at the Botanical Gardens for Caregivers and patients. 210-822-6449.
You can call me anytime. Mike 817-907-0161. Best Wishes,
I want to echo advice from another forum member for you to begin ASAP getting him (and you) accustomed to having others provide direct care for him. I have found it to be a difficult adjustment. My husband defaults to relying on me and after 48 years I automatically respond. For me, I get out of the house at least twice a week and leave husband and caregivers to work on their relationship. If i have nothing else scheduled, I will go to the library and read or get a latte and walk in our urban park nearby. It is a lifesaver, I think, for all involved.
This may be a very long journey for you. Please take care of yourself. Do you two have children? If yes, I strongly encourage you to involve them. Keep them abreast of what is happening. If something should happen to prevent you from administering his care, they should be aware of details in order to be able to step up. One of our sons has actually expressed gratitude for the opportunity to be informed and to assist. If no children, think about who could step in for you and keep that person informed.
I am not currently in a local support group but I am trying a new one next month. I am in a book club that I have been with for 15 years. Also, I am in a dream interpretation group. (I am a retired therapist.) One of my friends in the Dream group recently lost her husband after 18 years with dementia. Her friendship has been priceless.
I share all of these extraneous details of my life because I hope you will continue to live your life. It will not be as expected but then life never turns out as planned. I wish for you peace and wisdom in your choices.
While there a lot of similarities in this disease each person brings their own life experience to it as well. I wish for you the best, and to find the best resources for YOU and for your husband. Although it’s only been a part of my life for a little less than a year, it is a roller coaster, and sometimes when we are sitting watching television together it is hard for me to believe that he is on this journey or should I say we. Thanks to all read this and to all of you going through this. I hope you find the support that you’re looking for.
What I have learned is this: You cannot reason with a broken brain.
If you try, all you will do is fight. It isn't worth it.
Contact your Area Agency on Aging and the Adult Service Unit of your area Department Social Services(also called Human Services in some areas) and ask if they can advise you about local respite care programs, adult daycare, etc. You can find numbers for those agencies by contacting eldercare.gov.
The federal government has some very helpful, free printed info you can order online- search NIH-NIA Alzheimer’s/dementia. 3 excellent, large guides are:
caring for a Person with Alzheimer’s Disease
The Caregiver’s Handbook
Advance Care Planning.
They also gave some great tip sheets and pamphlets.
Get acquainted with Teepa Snow, a renown dementia expert/trainer with loads of free videos and information as well as paid training.
I agree with suggestions about lining up help sooner than later- to get him used to an alternate care provider and to give you a break. Don’t let his resistance or refusal stop you- he will get used to it over time.
Best of luck on your journey ahead- it may be very challenging, but tackling it a day, or an hire, at a time will help you survive.
Nancy A. in Virginia Beach
I don’t know where you are located but the Alzheimer’s Association can help you find recourses in your area.
there are support groups. Even some online. There are books. One very small book called “I Care” is excellent. We were given this book at a dementia group event. In our area we have something called a Memory Cafe for those with dementia and their caregiver. from 10-2 one day a week with music and pet therapy, crafts, lunch, and exercise for those with dementia while the care givers have their own time of support. Plus some other appropriate activities. There may be things just like this elsewhere. You could contact your local Office on Aging and they could tell you what is available.
you are not alone. There is much support out there for you. I pray you will find something that helps.