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.
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?
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.
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.
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, 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.
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!
Dementia by itself is awful and difficult and life altering. Early onset dementia is a special hell of its own. My mom retired from work at 58. We fought about it because I didn't understand what she was doing. She didn't have any money saved, she had very little equity in her home. After her and my dad divorced, she had to start all over with nothing. I was afraid she was going to get herself into a financial pickle retiring so early. She didn't have hobbies or friends to do things with, so I was very concerned that she would be bored, broke and have zero stimulation. All she would tell me was she was tired of working. It took years before she was diagnosed with dementia, but looking back on it, I think she was having issues at work and either didn't understand what was happening or she knew very well what was happening and thought quitting would help. By the time things were bad, like her getting lost driving or showing up at my front door really early in the morning while I was getting ready for work thinking we had plans, she had become pretty compliant when I suggested we all get a physical. I also requested that she have a simulated driving test during this physical which she failed miserably. When the doctor told her she shouldn't be driving, I sold her car and had to take on all of her tasks. Truthfully, I don't know what I would have done had she fought me on the issue. I guess I would have called adult protective services. I have friends whose husbands had Lewy Body Dementia and they were violent and putting themselves and their family in danger so they had to be placed in a facility.
I can tell you that you are not alone and I am so sorry that you are going through this. Your husbands temperament and the type of dementia he has will determine what your next steps will be. Visiting an elder lawyer to get everything in place and your power of attorney established is important if you haven't already done it. You are going to have your hands full and there will be days when you aren't sure you can handle it, but that is what sites like this are for. You can vent, you can ask questions, you can just read about others situations, ect. I find comfort in it and hopefully you will to.
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 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.
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.
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.
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).
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.
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.
I can tell you that you are not alone and I am so sorry that you are going through this. Your husbands temperament and the type of dementia he has will determine what your next steps will be. Visiting an elder lawyer to get everything in place and your power of attorney established is important if you haven't already done it. You are going to have your hands full and there will be days when you aren't sure you can handle it, but that is what sites like this are for. You can vent, you can ask questions, you can just read about others situations, ect. I find comfort in it and hopefully you will to.