'Husband early onset AD 15 years ago age 58' posted by kaye @ {post.created_at.to_s(:post_time)}

kaye — Sun, 22 Feb 2009 03:27:27 -0000

Thanks Cherry and Joy for the posts. They were very helpful. Jerry does like to garden although he has a lot of trouble focusing these days. But as you said, it is for fun, not to be perfect. He is no longer able to cook or read. He used to read all the time, but now he says the pages are like gray matter with no meaning for him. He has lost the ability to do so much. We have a dog (Maltese) and the three of us take walks together. Jerry went by himself the other day (with the dog) and when I went looking for them he was "heading home" but in the wrong direction. So far, we are managing fairly well but I sometimes wonder what the future will hold. Joy, I really like the photo album idea - I'm going to start on that tomorrow. I think he will enjoy that. Thanks again for sharing your thoughts and ideas. You both seem like strong positive people and I can appreciate that as that is what I am striving for these days.

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Sat, 21 Feb 2009 21:36:16 -0000

Dear Kaye,

I realize you are concerned about your husband but you also must be concerned about yourself. "Never start a routine you cannot keep."

As gently as possible try to get your husband to help out around the house. Anything he can do to help you will give you more quality time together. Working full time, taking care of the house and worrying about him is doing to take its toll on you.

Soup and a sandwich for dinner is great. Some help with the laundry. You get the idea. Being appreciative for his help will make him feel better and also help you mentally and physically.

I have seen so many caretakers just 'burn out.' You must take care of yourself.

Currently there are support groups, good books, etc. Use them and do not feel guilty. You did not cause this problem. You can only do so much.

Take care,

Cherry

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Sat, 21 Feb 2009 20:03:57 -0000

Good ideas Joy.

I can only add reading, cooking and maybe a pet. A dog is good company and will help get him to take walks etc.

The hardest thing about hobbies is that it has to be something he wants to do.

There are community centers, churches and all sorts of volunteer work. It really depends on what he is willing and able to try.

We are all rooting for you,

Cherry

'Husband early onset AD 15 years ago age 58' posted by joyg @ {post.created_at.to_s(:post_time)}

joyg — Sat, 21 Feb 2009 15:48:34 -0000

What are his interests? What has he always been interested in? Start right there. My husband loves humor and family. I got him DVD's of Red Skelton, Johnny Carson, etc. He loves music so we have the music channel on our TV. I had him start working on photo albums. I kept them small, just 4/6. We sorted them my family, friends, fun, vacations, etc. After 8 years he still loves to look through them. Can he still use a golf club? Have him practice his putting. My husband played singles tennis with a pro up until last June. Does he love to garden? Had him work on house plants, repot pots for the patio, or start a garden. Remember none of these things as to be perfect, just fun!

Get the book Learning to Speak Alzheimer's. It is a wonderful resource. And remember you can still just talk to him and discuss things with him as you always have. He might not understand it all but the love in your voice with be enough for him. Keep in touch. Joy

'Husband early onset AD 15 years ago age 58' posted by kaye @ {post.created_at.to_s(:post_time)}

kaye — Sat, 21 Feb 2009 05:21:37 -0000

Hello, I'm new to this so bear with me. My husband has been diagnosed with Alzheimers at 57 years of age. I can't believe this is happening to him but I know it could be worse. You never really know what life has in store for you. Right now, he seems happy but a little scared of the future. We still have fun together and try to laugh a lot. Sometimes I feel kind of alone because I can't really discuss things with him anymore. We recently moved to be closer to his parents and that has been difficult - we don't have much of a support group. It's especially hard for him because he loves people. I would like some suggestions for things to occupy him as I still work full time and I always feel like I'm leaving him with nothing to do when I go to work.

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Fri, 20 Feb 2009 13:35:05 -0000

Dear Torn,

Yes, I know about the gag reflex. My husband and his two sisters are also very aware of it. That is why they made up the story that he had a small stroke and that is why he cannot swallow. I didn't realize until recently that only the children knew about the ALS.

I have a dear high school friend who has Parkinsons. She had the symptoms in her 40s but they didn't diagnose her for years. The medicine does help. She told me that Michael J. Fox being a spokesman for Parkinsons was the best thing that ever happened to her. She said after he became a spokesman when people commented to her about her shaking, when she said she had Parkinsons people knew - oh, that is a terrible disease Michael J. Fox has. She said it made having the disase and resulting pain and embarrassment more bearable. Her mind is fine.

This family is just nuts. I am embarrassed by them.

Thank you for the words of kindness. I am not flying up this weekend but my daughter is joining her father. I wonder how soon the funeral will be.

'Husband early onset AD 15 years ago age 58' posted by love torn @ {post.created_at.to_s(:post_time)}

love torn — Fri, 20 Feb 2009 00:15:21 -0000

Hi Cherry Pie,

I am just wondering if you know that at the end AD and FTD, and ALS all lose the swallowing reflex and other control's of bodily funtions as well . So many of the Demenia's are also missed diagnosed because symptoms are so simular and cross over . Good luck with the family dynamics. I know how tough they can be Dealing with my husband of 60 with FTD--Frontal Temporal Lobe Dementia . Love Torn

'Husband early onset AD 15 years ago age 58' posted by love torn @ {post.created_at.to_s(:post_time)}

love torn — Fri, 20 Feb 2009 00:14:57 -0000

Hi Cherry Pie,

'Husband early onset AD 15 years ago age 58' posted by joyg @ {post.created_at.to_s(:post_time)}

joyg — Thu, 19 Feb 2009 22:06:19 -0000

I am so sorry you will have to lie. I had a similar experience with my husbands sister years ago. It was quite obvious that something was terribly wrong and probably Alzheimer's, but no one would admit it or even get her to a doctor. Then the doctor, without any testing, said it was just senior moments. Have visiting with her for two weeks, I couldn't keep my mouth shut. She and two of her daughters even worked at the hospital. So I insisted that she be tested and even mentioned that it could be a brain tumor. A month went by with no comment. Finally she called and said she had been throughly checked out and it was Alzheimer's. The sad part is that if she had not been honest my own husband would not have been diagnosed early. Because she was honest and we started meds early he has had 8 fairly good years. But can you say anything ... no. I feel sorry you have to lie for all of the children and grandchildren who might need honesty in the future..

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Thu, 19 Feb 2009 18:39:39 -0000

Dear Friends,

My father-in-law is fading and I suspect the end is near. He now cannot swallow well which is one reason ALS kills.

Imagine my surprise when my sister-in-law sent an email to extended family and ALS was not mentioned. They made up this story about his health which did not include ALS.This family has always been less than honest. My husband's uncle had MS but no, 'he had a bad shot.' Oddly enough another uncle was a surgeon.

I am saddened that over the decades they are still dishonest. When I go to the funeral we will all have to lie. It is not my family so I do not feel I have a vote.

I told my husband this does a diservice to all people with ALS and the families who love them.

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Thu, 05 Feb 2009 13:30:46 -0000

Dear Joy,

I am so happy for you and your family. I pray the improvement will last forever.

Medicine is not perfect, that is why they call it 'practicing.'

'Husband early onset AD 15 years ago age 58' posted by joyg @ {post.created_at.to_s(:post_time)}

joyg — Thu, 05 Feb 2009 03:47:23 -0000

After 8 years of my husband having Alzheimer's, I just learned that they don't think he ever had that form. They think now that he has Lewybody. This is second only to Alzheimer's. The meds are the same, but the symtoms are quite different. The decline is much more physical, similar to Parkinson's and the memory traits are different. He can remember current events quite well for example. Until two weeks ago he couldn't carry on a conversation for lack of word skills, he couldn't read, he couldn't walk up straight and tall. Now after a major incident where he couldn't move from the waist down, at last resort they decided to try a lumbar puncture. He didn't have hardly any fluid to drain which surprised them. They expected no real improvement. Yet he is now talking in full sentences, reading some words, and walking tall. He is having therapy 3 times a day. , 7 days a week in a skilled nursing facility. No one can tell me why this is happening or how long it might last. Our family has just decided to enjoy this gift/miracle we have been given for as long as it lasts. It is truly amazing.

Joy G icannews@comcast.net

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Wed, 04 Feb 2009 23:10:43 -0000

Dear StillBill -

Do not quote me but about 1/3 of people with Parkinsons also get dementia.

My issue was when I went throught this 1970-2000, there was little known about dementia.

There are many forms of dementia. When a drug company came out with some thing for ALS there was suddenly all this interest.

There are many forms of dementia. Strokes, heart attacks, etc. and esp. complications from heart by-passes.

'Husband early onset AD 15 years ago age 58' posted by Wellspouse @ {post.created_at.to_s(:post_time)}

Wellspouse — Wed, 04 Feb 2009 21:51:54 -0000

Just read the entries on this thread. Most are spouses of people with AD. Loved the suggestion of "I'm really feeling like driving today"... if you can make it work.

Best, Richard

'Husband early onset AD 15 years ago age 58' posted by StillBill @ {post.created_at.to_s(:post_time)}

StillBill — Mon, 02 Feb 2009 03:26:56 -0000

I am new to this site. I stumbled onto it by accident but I learned much more.I have looked at outher sites for answers and for people who has gone through or going through problems like this. My sister and I have a mother who is going through Parkinsons and we know AD is also some how connected. Mom had this diease now for about 15 years. I believe that her stubornness has kept her going. But lately she has gotten worse and requires much more care giving that the two of us can really give, but we want to keep her in her own home as long as possible. It is nice to know that there are other people that are facing the same challenges and willing to share helpful information. Thank you.

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Tue, 13 Jan 2009 13:49:07 -0000

Make certain you have important information and you cannot trust your loved one's memory.

After my mother was private pay in a nursing home for over 10 years, she ran out of money so I had to apply for Medicaid. My mother said she never had Social Security because she and my father only worked for the government and they had their own pension system. I had a terribly time getting her Medicaid because I first had to get her Social Security.

Today I checked the SSDI (Social Security Death Index) for my mother. She had a social Security Number issued in PA prior to 1951 but had my residence at the last known location. No one ever told me she already had a SS number.

'Husband early onset AD 15 years ago age 58' posted by joyg @ {post.created_at.to_s(:post_time)}

joyg — Sun, 04 Jan 2009 00:04:33 -0000

I will find some current information on the alert bag I spoke of. We got our information from the 911 people. You can also have ICE (in case of emergency) in your cell phone. Under that caption you put all important information for contacts. If you have a cell phone with you, it gives them the information. Of course I hope that many of you know about the Jitterbug phone system. We had this for many years with my husband. There is always a real operator and all he had to do was either press the home button and get my cell phone or press operator and they would connect him to any name he mentioned in our list.. When we went on trips or even to the mall, I had made up my own business cards with all of the cell phone numbers of our kids. Even if we were in Seattle instead of Tucson Bob always had an ID card in his pocket. I kept them in all pants and coats and laminated them at Kinko's in case they went through the wash.

'Husband early onset AD 15 years ago age 58' posted by Cheryl E. @ {post.created_at.to_s(:post_time)}

Cheryl E. — Sat, 03 Jan 2009 22:44:20 -0000

Thanks Everyone for your response to my post!

They are all good suggestions, feedback & a wonderful feeling of support from people who have gone through or currently going through similar issues w/family/friends w/severe dementia or Alzheimers. I did not realize there were so many types of dementia until I began researching the subject. I will get a copy of "Learning to Speak Alzheimers." Another good book with all the basic info about Alzheimers, that includes helpful suggestions for coping w/all the issues connected to the disease, is aptly titled, "Alzheimers For Dummies." Our daughter who is a medical assistant bought it for us, along w/another book titled, "Mayo Clinic on Alzheimers Disease." My mother in law's current neurologist sent a sample of her blood to the Mayo clinic Alzheimers Reasearch Center, that apparently has pretty much isolated a medical "marker" for help w/diagnosing Alzheimers, though at this writing, I don't have complete info about this--maybe go to the website for the Mayo Alzheimers Research Center.

I will also ask about the Comfort Care Only release form that I have not heard of--my daughter can easily attain that info through her work as she works at a University of Washington medical clinic.I believe some of these legal medical paperwork vary from state to state, but I too want to look into whether the living will & medical directives will be honored for our mother in law & ourselves; none of us want our life prolonged if we are at the point we are unable to communicate our desires, we can no longer care for ourselves, hooked up to machines, feeding tubes, etc. I think it is criminal to force continuance of this upon the individual with the illness & their family & also the significant financial burden it puts on spouses and/or adult children.

Probably all of you also know that it is important to arrange POA (Power of Attorney) while the family member still has the ability to agree & sign the legal paperwork, for a family member to be able to make the financial & other assests decisions for the ailing family member. And as discussed, the paperwork that needs to be signed for a family member to make the medical decisions. I was unaware of an alert bag that can be put on the refrigerator so that all the important documents can easily be found in case of a 911 emergency or for any family member/neighbor/friend to have easy access to all of the important paperwork that medics & hospitals must have. Where are these found, perhaps in the pharmacy area? Again, thank you for all of your responses that are greatly appreciated, Cheryl E.

'Husband early onset AD 15 years ago age 58' posted by joyg @ {post.created_at.to_s(:post_time)}

joyg — Sat, 03 Jan 2009 16:33:45 -0000

Thanks Cherry. I have not heard of Comfort Care. I thought we had everything. I even went to the hospital here in Tucson and filed a do not resisitate. I have also found out that some of our documents might not be honored in Arizona since they were written in Washington state. I also am getting the alert bag of documents and wishes posted on our refrigerator. That is what the 911 people look for first. All good things to know and have ready way ahead of time. Thanks again.

'Husband early onset AD 15 years ago age 58' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Sat, 03 Jan 2009 13:45:43 -0000

Dear Cheryl,

You should insist the doctor try another anti-depressant. He can start a new one while leaving her on the old one. Most anti-depressants should not be stopped 'cold turkey.' Then if there is improvement, the doctor may slowly reduce the original one. Anti-depressants can be wonderful but they very often stop working after years.

Dear all,

It is important for your loved one and yourself to have a Living Will. But a Living Will, as I discovered, is not enough. There is something called 'Comfort Care Only.' This is more restrictive.

It is important to know your loved ones feelings and let them to sign when they still are deemed competent. My entire family executed the 'standard' Living Will' in the 1980s when they became available in mass. This did not protect my mother. I found after she had been put on life support and tube feeding after yet another stroke, the doctor said he could do what he wanted because I didn't have 'Comfort Care Only.' My mother lived , blind, immobile, uncommunitive, diapered and hand fed for another 5 years. She only groaned and would open her mother if you touched her cheek - like a baby bird.

So I executed the 'Comfort Care Only' document. She was still brought to the emergency room on life support yet again. My advice is to get good legal advice. Things may have changed since I went through this dreadful situation. It was far worse for my mother than for me. Mom mercibly died in 2000. After five years of her begging me to help her 'kill herself' I still wonder if I did the right thing. This was prior to her becoming uncommunitative.

How did my mother get in this Nursing Home? When my sister was committed to the State Mental Institution (3rd time) my mother called me 100 times a day and insisted I find a Nursing Home for her. She just kept calling a ambulance and going to the hospital. Before that she resisted any of my advice.

I truly hope none of you have to deal with what I did. Please look into a Living Will and 'Comfort Care Only.' If your loved ones have some shred of their normal selves - enjoy them.

In Care,

Cherry

'Husband early onset AD 15 years ago age 58' posted by joyg @ {post.created_at.to_s(:post_time)}

joyg — Fri, 02 Jan 2009 22:13:13 -0000

Hi Cheryl - We lived in Seattle until we moved to Tucson 2 years ago into a CCRC (continuing care retirement community). I have mentioned this to the group before, but I think you would enjoy reading Learning To Speak Alzheimer's. I just found it recently and wished I had known about it sooner. I like it so much I am starting a care givers book club in February here at Splendido and will use that book. Care givers of all types will be encouraged to attend. It keeps a very positive attitude. I found a support group in Seattle through the Alzheimer's Assoc, but I decided it wasn't for me. Keep in touch with this group, they are terrific.

In another place on this web site I started a discussion New Years Eve and posted The Gift, about a gift I received that night. You might want to try and find it.

In caring, Joy

'Husband early onset AD 15 years ago age 58' posted by Cheryl E. @ {post.created_at.to_s(:post_time)}

Cheryl E. — Fri, 02 Jan 2009 22:03:59 -0000

Hello Everyone, I came to this website for more information on Alzheimers because I care for my husband's mother who has Alzheimers; we all live together. Her grandmother & an aunt also had the disease & possibly more relatives because until Alzheimers was given a name, remember that people were just labeled 'senile' from mild to severe & much of it was more than likely Alzheimers, though there are many different types of dementia also. She was in the beginning stage maybe 7 yrs. years ago, but her husband was dying of cancer, so she did not see a Dr. about it until 4 yrs. ago when I insisted she be tested for it. She is on Excelon but it did not seem to help her after being on it for 2 yrs. A new neurologist then put her on an anti-depressant/anxiety medication also, that helped a great deal as she has always beeen normally good natured but was having severe anxiety, often becoming aggitated, grabbing at me, even by the hair to get my attention or stop me from doing something, yelling at me usually about insignificant issues, arguing over everything & not sleeping well.. The new med restored her good nature, though the short term memory things cotinued to happen, her long term memory still seemed good, overall, things improved. But over the past 6 months or so, my husband & I have noticed both her short term & long term memories worsening & she is again exhibiting some anxiety & frustration, though not as severe as before. But her memory is suddenly much worse but she still takes care of her personal care, though I may have to remind her to change her clothes as she tends to wear the same outfit every day unless I remind her. She is beginnng to sleep more, sometimes not getting up until 11am or even noon; this is new for her as she was always an early riser before. She has an appt. w/her neurologist next week, when I will ask him about either changing her medication dosage or trying a different medication--we'd like to see if Aricept might work better for her. She takes 2-4 short daily walks--they really help keep her anxiety/aggitation/frustration under control; she refuses to use the treadmill we have in the house because she wants to be outdoors & the stimulation of seeing people, being out in nature & observing life in the outside world is good for her. She has lived in the same neighborhood for 40 years & never goes far, she takes a cell phone that has emergency numbers on there with all of our names, an I.D. bracelet & house key So far, she has not gotten lost but I anticipate the day she will no longer be able to find her way home--I simply cannot take that many walks a day with her--I work from home as a writer but I have some medical problems myself that limits the amount of physical exercise because I also take care of the house, yard, meals, laundry, animals, shopping & drive myself & my mother in law to Dr. appts./other appts. I do get to points of burnout, when we have her go stay a few days with a daughter that lives about an hour away, but she works a fulltime job outside her home so those stays are far/few between. And the rest of her children live out of state. We also have church members help sometimes by having someone come stay with her while I have a few hrs. or a day to myself. I will know when it is time to hire an in-home caregiver as I know my physical limitations. And my husband & I have already descussed the matter of her going to a facility when her Alzheimers becomes severe enough that we can no longer care for her. It is ironic because in the past, I once had a job as an in-home caregiver for people w/different ailments, some w/alzheimers & also worked at a large retirement community with an Alzheimers ward for a few years. But it is entirely different when it is a loved one with the disease, someone you have known for most or all of your life, to observe their demise into this terrible disease that destroys the person's mind, thereby destroying their personality & capabilities, etc. So the emotional stress of caring for a loved one w/alzheimers is very severe, though I feel the most loving thing we can do is care for them as long as we can. Yes, they will more than likely reach the point they must go to a facility, but it is wonderful if they can get loving care by family members for as long as possible. I am currently looking for an Alzheimers support group in Seattle, where we live because I feel that would help a great deal, meeting, talking & listening to others going through similar situations. Though we mean well as family, it's always good to get an unbiased, outsider point-of-view, also, perhaps helping those of us so close to the situation, realize that perhaps we need to make changes in the way we are caring for our loved one, whether that means bringing in outside help or finding a facility for them. We all know it is one of the most difficult decisions to make but as Anette has shown us, you can still be a part of their life, still help to take loving care of them, but also making sure they are getting the best possible care for their sake. Sometimes I feel people keep loved ones at home for their own personal emotional needs & I could be just as guilty of that as anyone, but it is a truth that can be very difficult to recognize.

Thanks for listening! Reading all of your posts sure let's me know I (we) are not alone & that in itself helps so much.

Cheryl E.

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Fri, 12 Dec 2008 19:07:10 -0000

Dear Missy,

Thank you for your reply. How are you doing currently. I have found there are 'rolling' loved ones with problems.

I think this site is marvelous. I certainly could have used it decades ago.

Stay in touch I can give you some 'hard core' issues. These are 'end of life' issues. But remember I had all legal documents in place and the nursing home just violated them.

Best wishes, Cherry

'Husband early onset AD 15 years ago age 58' posted by Missy @ {post.created_at.to_s(:post_time)}

Missy — Fri, 12 Dec 2008 14:50:14 -0000

Hi CherryPie,

Welcome to our community. I hope you find the support here that is helpful to you. Here's to a safe trip for your husband.

Please let us know how it goes with your in-laws.

'Husband early onset AD 15 years ago age 58' posted by CherryPie @ {post.created_at.to_s(:post_time)}

CherryPie — Fri, 12 Dec 2008 14:20:28 -0000

Dear Friends,

What a wonderful site. I wish something like this had been around for me 35 years ago. At that point my only sibling was a paranoid schizophrenic, my father, who was sane, had killed himself; my mother also mentally ill had vascular dementia. It was 30 years of hell. Now it is over but I cannot ‘let it go’ mentally.

This morning my husband has flown to help with the clearing out of his father’s and step-mother’s apartments. My father-in-law has AD. An added issue was that his father, who also has a blood disorder, is, as of yesterday, in the hospital. As I kissed my husband good-bye at the airport, I said, “I am so sorry, but I cannot do this again.”

I think your support group is wonderful.

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