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Hi. I am now 61 but have been going through a nightmare for the past 5 years. In 2014 I started to notice new behaviours in my husband
he was misdiagnosed over and over acute depression and anxiety bi polar Parkinsons
and now finally after his 5th hospital admission in 18 mths we have a diagnosis of frontal lobe Dementia with Parkinson like symptoms and they are not even 100% about that
basically his has come under the early Dementia umbrella
The hard part for me has been everything that has gone on before now. Being in his 50’s when this started made diagnosis harder and being able to access services near impossible
he he is now on memory patches which he has responded to very well. Hoping he gets at least two years before regression because he will be able to easily access aged care services and respite then permanent care
what type of Dementia has he been diagnosed with and where do you live. I live in Australia.
Dear jennifer3954, Big hugs!!! I am so sorry you are going through this! You are definitely not alone!!!
We are 64y/o & have been on this journey almost 20 years, ever since my husband had a neck & brain stem injury & concussion. For at least 10 years no one would even listen to me when I said something was wrong with DH. Over the years the diagnoses have been: PTSD, midlife crisis, reactive hypoglycemia, depression, mid to late stage Alzheimer's, left temporal lobe injury with focal seizures, small vessel disease, post concussion syndrome, chronic traumatic encephalopathy, central sleep apnea, idiopathic bradycardia, Parkinson's & my personal favorite: "There's nothing wrong with him. The problem is YOU. I'm gonna write you a prescription that will make you feel better."
We are now 5 years on from the Alzheimer's diagnosis & the doctor saying DH needed to be in a facility & would die within the year.
Over the years DH has been mean, angry, dismissive, paranoid, verbally & emotionally abusive. We were on the brink of divorce more than once. Now he is just a sweet little man who doesn't know his name or exactly who I am, but he knows we love each other.
It is hard. I will not blow sunshine & rainbows at you. You will find out who your real friends are. You will discover strength you didn't know you had. You will find there are things you just cannot or will not do. You will feel sad, mad, desperate, alone, lonely & unhappy. You will find joy, love, fun & compassion where you may least expect it.
For me it was easier to relax & adapt once I quit looking for answers. There is no answer. There is no magic wand or pill or treatment. There is only the life happening around you right now.
Treat symptoms as they arise. Look for & use respite care. Daily adult care services has been a sanity saver for me. Gardening can be a stress relief. When people want to help, let them do something for you.
Make sure all your legal papers are in order. And make double triple sure you have someone in place that can act for you on your husband's behalf when you are sick or otherwise unable to!!!
Come to this forum whenever you can. You will find friendship, understanding, compassion & knowledge!!! There is such a wealth of experience here. And everyone wants to help.
I just wanted to say thank you for your response to this young lady. I pray she reads it and finds your answer. What a lovely response. Thanks for taking the time.
I am so sorry that you have to go through this. This disease is devastating to so many. But you are not alone. There are support groups that are designed for people of loved ones with dementia. I encourage you to Google those closest to you and join. I also hope that you learn as much as you can about the disease so to better understand what he is going through as well. This will not be an easy road and I will not try to make it sound like it will...but I will reiterate that you are not alone. Sugestion: You could try starting your own online blog by documenting your journey with him. People identify with open, honest readings. This will gain a following bc so many caregivers suffer in silence. It is them who withdraw for so many reasons. I encourage you to be his voice against the disease by bringing attention to it. This is so important. We are expecting this disease to double by 2025 if not triple because for the first time in history our baby boomers will have aged and will outnumber our youth! Scary.
My brother had it. He died at 58. my girlfriend had something similar, she died at 59. I know both had motorcycle accidents. Maybe that sparked something in the brain. Girlfriend's boyfriend, couldn't take it anymore and dumped her off at her sister's house.
My brother lived nearby with his family. He would always walk to my house. He always walked. I would try to take him for walks, and see our mom. HIs neighbor said get him a haircut before he sees your mom. I did.
HIs wife had to put him in a lock down facility. He was getting to be too dangerous. . He would walk in front of traffic. He was the youngest one in lockdown. It was very sad. I was the only one to visit him. His caretaker at the place cried when she found out he had family. It was too hard on his family to see him in that condition.
Just remind him you love him. Brother started getting his utensils mixed up. Eating soup with a fork, etc. His brain craved sugar. He would gulp down sodas as fast as they brought them. It was not good. Watch the sugar intake. Before I knew how bad it was, I gave him pistachios or cherries. His wife called me and said he chipped a tooth on one of those items. She tried taking it away, and he got angry....
Do call social services or Salvation Army in your area. Maybe they have adult day care or something for him for a few hours a week.
There have been a series of articles in MacLeans Magazine, a Canadian news magazine about a young couple struggling with very early onset ALZ. perhaps you can find them online?
I believe the husband was in his late thirties when he was diagnosed.
I'm so sorry to see this news about your husband. I can't imagine how you must be reeling from this diagnosis. It's so good that you are reaching out for support. There are some great suggestions on this thread. I'd explore both local and national referrals for support groups, both in person and online. There are a lot of other spouses in similar situations who might be able to help provide support and tips. The Alzheimers Association may be able to provide info on what resources DH may be entitled to.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
but have been going through a nightmare for the past 5 years. In 2014 I started to notice new behaviours in my husband
he was misdiagnosed over and over
acute depression and anxiety
bi polar
Parkinsons
and now finally after his 5th hospital admission in 18 mths we have a diagnosis of frontal lobe Dementia with Parkinson like symptoms and they are not even 100% about that
basically his has come under the early Dementia umbrella
The hard part for me has been everything that has gone on before now. Being in his 50’s when this started made diagnosis harder and being able to access services near impossible
he he is now on memory patches which he has responded to very well. Hoping he gets at least two years before regression because he will be able to easily access aged care services and respite then permanent care
what type of Dementia has he been diagnosed with and where do you live. I live in Australia.
We are 64y/o & have been on this journey almost 20 years, ever since my husband had a neck & brain stem injury & concussion. For at least 10 years no one would even listen to me when I said something was wrong with DH. Over the years the diagnoses have been: PTSD, midlife crisis, reactive hypoglycemia, depression, mid to late stage Alzheimer's, left temporal lobe injury with focal seizures, small vessel disease, post concussion syndrome, chronic traumatic encephalopathy, central sleep apnea, idiopathic bradycardia, Parkinson's & my personal favorite: "There's nothing wrong with him. The problem is YOU. I'm gonna write you a prescription that will make you feel better."
We are now 5 years on from the Alzheimer's diagnosis & the doctor saying DH needed to be in a facility & would die within the year.
Over the years DH has been mean, angry, dismissive, paranoid, verbally & emotionally abusive. We were on the brink of divorce more than once. Now he is just a sweet little man who doesn't know his name or exactly who I am, but he knows we love each other.
It is hard. I will not blow sunshine & rainbows at you. You will find out who your real friends are. You will discover strength you didn't know you had. You will find there are things you just cannot or will not do. You will feel sad, mad, desperate, alone, lonely & unhappy. You will find joy, love, fun & compassion where you may least expect it.
For me it was easier to relax & adapt once I quit looking for answers. There is no answer. There is no magic wand or pill or treatment. There is only the life happening around you right now.
Treat symptoms as they arise. Look for & use respite care. Daily adult care services has been a sanity saver for me. Gardening can be a stress relief. When people want to help, let them do something for you.
Make sure all your legal papers are in order. And make double triple sure you have someone in place that can act for you on your husband's behalf when you are sick or otherwise unable to!!!
Come to this forum whenever you can. You will find friendship, understanding, compassion & knowledge!!! There is such a wealth of experience here. And everyone wants to help.
I also hope that you learn as much as you can about the disease so to better understand what he is going through as well.
This will not be an easy road and I will not try to make it sound like it will...but I will reiterate that you are not alone.
Sugestion:
You could try starting your own online blog by documenting your journey with him. People identify with open, honest readings. This will gain a following bc so many caregivers suffer in silence. It is them who withdraw for so many reasons.
I encourage you to be his voice against the disease by bringing attention to it. This is so important. We are expecting this disease to double by 2025 if not triple because for the first time in history our baby boomers will have aged and will outnumber our youth!
Scary.
My brother lived nearby with his family. He would always walk to my house. He always walked. I would try to take him for walks, and see our mom. HIs neighbor said get him a haircut before he sees your mom. I did.
HIs wife had to put him in a lock down facility. He was getting to be too dangerous. . He would walk in front of traffic. He was the youngest one in lockdown. It was very sad. I was the only one to visit him. His caretaker at the place cried when she found out he had family. It was too hard on his family to see him in that condition.
Just remind him you love him. Brother started getting his utensils mixed up. Eating soup with a fork, etc. His brain craved sugar. He would gulp down sodas as fast as they brought them. It was not good. Watch the sugar intake. Before I knew how bad it was, I gave him pistachios or cherries. His wife called me and said he chipped a tooth on one of those items. She tried taking it away, and he got angry....
Do call social services or Salvation Army in your area. Maybe they have adult day care or something for him for a few hours a week.
I believe the husband was in his late thirties when he was diagnosed.
it may help.