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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.
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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.
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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.
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.
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.
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).
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.
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.
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.
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.
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 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.
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).
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.
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.
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.