Hi Anita, I'm new to this Site, but am glad I found it. I read all that you had rescently writtin and thank you for sharring your inner thoughts and feelings, concerning your ongoing situation. Sounds to me like Ron is and was a great guy at not just what he did I bet. You, as well, have much love within you, that you demonstrate very clearly to others you come in contact with, as well as Ron. You are a strong, carring, thoughtfull, faithfull person. GBU. < Stardust.

Hi Anita,

Thank you so much for your post.  You really gave me some insight into the life of one spouse caring for another with AD.  I'm really glad you've joined us in Caring's community.

You and Ron sound like amazing people.  You've been through and continue to go through so much.  I sat shaking my head reading about the caregiver shaving Ron's eyebrows.  I couldn't be happier for you that he's now a facitlity that you are satisfied with. 

I have a feeling you'll get to connect with others in your same situation here.  I know they will all be very appreciative of you sharing your story.

Please keep us updated on Ron's and your condition.  We're here for you, Anita!  I'll be thinking about you.

Hi Anita, and welcome.

Thank you for sharing your story with us. Ron sounds like a marvelous man and I'm sorry that he's been affected so young and so severely. I cannot believe some of the facilities out there - any advice on looking for ones that are not going to to such things to our loved ones?

Please do keep us updated on him, and you!

Hello Anita. Thank you for shareing such a loving and yet informative letter.It reminded me of the movie (The Notebook),Which me and my daughter cry'd a river from.And if you haven't ever seen it,please do so.It's a must see.
I do have a question to ask of you. I myself am 51 and suffering quite frequently now with memory loss problems. It started 6 or so years ago,(lightly,and I figured it was just stress) but progressed from that,to funny....I would do the darndest things,and even got my speach all backwards and upside down. But now it is no longer funny,but scarry.
What I would like to know is how your husband was diagnosed. I have very poor health-care coverage. *It is the state coverage,for low income individuals.* And they do very little to help with anything.I have voiced my concerns to a Few doctors,only to be told "it's just the ageing process."
I would like nothing more than to agree...but my gut tells me otherwise.
I do not know what to do or where to go. Could you give me any information where I may get some answers. I would so appreciate it.
And thank you once again for your story. May Gods hands surround you.  Measongs

Hello Anita,

           I'm late in responding because have been busy with my Spouse with Early onset . Diagnosed 2 years ago now but the disease seems to move faster with EOS AD. Although you have given me hope. 15 years . My husbands brother died of it at 63. My husband is now 60. He has his second driving eval friday and I'm sure driving will end this time . That is going to be very devastating for him . He  has an IQ of 145 before all this and family also college educated too. and a leader at work ,home and sports and community activities in the past. His sister also has it a year  younger , but further along then him Maybe by a year. I take one day at a time and have as much fun with him and sister and family as possible . We laugh alot . I call myself for privacy ,Love Torn Because that's how it feels. I'm sure you feel the same . So happy you found a wonderful place that he and you are happy with . That is hard to do. God bless & the best to all.

Dear Love Torn, The way I handled the driving problem was to always ask if I could drive the car or his pickup today.  He would say " you really want to drive?"  I of course would say "I'd really love to drive today."  He always said okay.  I never had to take his keys as he would never leave without me and then it got so he could'nt remember how to use them or what key went to what.  One day he asked me why he had all these keys and I said I don't know I have the same keys and there is really no reason for him to bother with  them.  I put them in my desk drawer and he never asked for them again.  When it came time to renew his license I gave the DMV person a note with Ron's license that Ron had Alzheimer's.  I told him Ron needed his DMV ID renewed.  The DMV person took the clue, was very nice, said "certainly", and asked Ron to go to window C and have his picture taken.  When we got in the car with the new ID card Ron said "Well that was easy" as he had really been silently dreading the ordeal.  The ID looks like a drivers license and he was pleased to be updated. Sometimes he would ask if I wanted him to drive but I would always say " I think I'd like to drive today if you don't mind".  He always seemed relieved that he didn't have to be responsible for getting us somewhere.  I think the nicest way to handle things like this is to never say no you can't drive or do what ever anymore but to always offer another way out of the situation.  After all no one likes to be told "no you can't do that", child or adult, and especially a person who has been in charge and has always taken care of the family.  They still have their dignity and it is up to us to not insult it.  I wish both of you all the happy moments you can possibly have in a day. Anita

Anita,

           Thanks for your helpful hints on the driving issue But-since I last responed my husband had his second driving evaluation in 6 months. It was recommended he no longer drive . While takeing his test the evaluater asked him to drive  back to his house. I was in the back. He twice went  the wrong way with only a block from our house . He also constently asked which way and got upset with all red lights. Which I have experienced for the last 6 months. But the not knowing our own street and going by it scared me . So after she (tester explained the results etc I asked for his keys . I said here our your house keys and the car door opener . I will still need you to open the door for me. I also had to bring 1 car to a friends until we sell it . So he won't be tempted . I Hide my keys .It is time he stop . I can't take the chance of him getting in an accident or getting lost . Last year a local man with AD went missing and they finally found him in a river off a dead end road. That is always in the back of my mind. So it has been 5 days since his eval and and so far all is well. He has been to a sports banquet (which I droped him off and picked him up) gone for breakfast with a friend and he has someone 1 time a week already taken him gofling  . So I will do my best to keep him as indepensent as possible even without the driving . I think we have to take each case in the driving issue on an indivisable  bassis . So far so good I'll keep you updated Thanks, Love Torn

Dear Love Torn, Glad to know you've solved the driving issue.  I think Ron was very easy since he was always afraid of getting lost, he would go no where without me. He seemed to always be aware of his capabilities until he could not find the bathroom, did not know our home, and did not know exactly who I was some of the time.  One time I asked him who I was and he looked very puzzled for a minute then replied " I don't know but you are a very nice person", I gave him a big hug.  Now he is in bed most of the time.  He is compfortable, and they lift him into his wheelchair for dinner and a few hours in the evening.  He has to be fed, but the good thing is he is eating very well even with his eyes shut.  I wonder sometimes if he keeps them shut because he doesn't understand what he is seeing.  He does know me once in a while and the other day held my hand and gave me a kiss.  Once in awhile he will ask a question "Are you sure about that" since I don't know what "that" refers to I simply reply "I think it's just fine", and he goes back into his world.Anita

Anita,    You seem to be a very strong person and very understanding of your and Ron's situation with this Inciduous disease . My husband always insisted on driving since his diagnosis .Also the last 2 weeks was insisting on an impulse to go somewhere by himself . He is handleing  not driving  pretty well I feel. Telling a friend today that I won't let him drive anymore but he has the  car door opener and he could lock me out or scare me with the Panic button. His friend said he could sit in the back and make everyone think he has a chaffer . Haa a he said. He is doing good. We have a hard road ahead and I see how gracious you are dealing with what seems to be the last stage . He  (Ron) knows you care and he knows he likes you and when he can no longer talk his eyes will tell you he is happy you are with him . NO Mattter how vacant they (his eyes) might be he knows and you will know . I saw this with my brother-in -Law who we visited often before his death .with AD. Glad your here . Love Torn              

             Hello Anita: Your post was very helpful and comforting to us. My husband was diagnosed with Mild  Dementia ,( 08/07.) He is 57.   We are also dealing with the driving issue.Thank you for the helpful hints .    Alaska Dreamin

Welcome ,Alaska Dreamin,

                            My sister-in law was 57 when diagnosed and husband 58 too. 2 years now and many changes but they are who they are and as long as they aren't hurting themselves or someone else I let it go. LIKE- we went to watch fire works with our son and family there was a great band and thousands of people . He danced around all the blankets and people every time they played and sat on our blanket in between . I followed him but let him be . I stayed about 10 feet behind . People would give him the thumbs up and a few might have thought he was drunk . Some would just smile .My son was worried people where laughing at him . I really didn't see that and let hime do his own thing . He was happy and enjoyed himself and hurting No one . My son thinks this is not Early Onset but something else like frontal lobe dementia _ maybe Picks  I think? But what ever, the treatment is the same and so is the outcome  unless a med is found soon that will stop this dementia. It looks like 2009 will bring this cure or hopefull medication . So hang in there --                           Love Torn

Dear Anita:

What a wonderful and loving relationship you and Ron share.  Thank you so much for sharing your story.

My Mother has just been diagnosed with Alzheimer's.  They are treating her with Aricept.  She is having side effects with her stomach, vomiting and cramping.  She also is very tired, weak  and just wants to stay in bed.  Did your husband, Ron go through this too? 

Mom is also very hard on my step-father.  Her personality has changed so much she hardly has a nice word for him.  She is 71 and he is 79.  He has always and is still very sweet and loving to her.  He cries a lot seeing her this way.  I worry about him too because he is not in good health. He has had several heartattacks and has a pacemaker.

I am having a hard time with my step-father because he is a very proud and stubborn man.   Because of his age he is not a very good driver.  He insist on driving but every time he is almost in an accident.  Pulling out in front of vehicles or not seeing people in the parking lot behind us.  He has had pneumonia for the past two weeks but refused to stay in the hospital because he doesn't want to leave Mom.  How do I get him to cooperate with me?  He doesn't listen to reason.

Does anyone know?  Please offer me some suggestions.

We have been facing this challenge since 2000.  Eight years in now and my husband is changing very rapidly.  He is still at home with me.  He is still very sweet and tries so hard to be social.  It is now the physical challenges that are very difficult for me.  He can no longer dress or toliet alone.  I must help him sit and get into bed.  My arms are getting very tired and sore.  I do work hard to keep myself healthy.  I read an excellent book recently titled "Learning to Speak Alzheimer's."  I wish I had found it many years ago.  It speaks of  being a "care partner" not a care giver.  This is actually the way I have worked with him for years.  The time will come soon when I will place him in a facility I have already choosen.  Until then, I will love him for what he can still do.  JoyG

Joy, that book sounds like it is a lifesaver. Thanks for letting us know about it, and best wishes to you!

I agree- thanks for the book recommendation, Joy! I stuck it in my Amazon private wish list for future reference.

Lisa

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.

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.

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

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.

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

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

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.

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.

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.