Husband early onset AD 15 years ago age 58 posted by love torn @ 06:23 PM July 06, 2008

love torn — Sun, 06 Jul 2008 18:23:12 -0000

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

Husband early onset AD 15 years ago age 58 posted by Alaska Dreamin @ 04:22 PM July 06, 2008

Alaska Dreamin — Sun, 06 Jul 2008 16:22:21 -0000

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

Husband early onset AD 15 years ago age 58 posted by love torn @ 03:30 AM June 10, 2008

love torn — Tue, 10 Jun 2008 03:30:28 -0000

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

Husband early onset AD 15 years ago age 58 posted by Anita @ 04:54 PM June 09, 2008

Anita — Mon, 09 Jun 2008 16:54:16 -0000

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

Husband early onset AD 15 years ago age 58 posted by love torn @ 01:59 PM June 09, 2008

love torn — Mon, 09 Jun 2008 13:59:10 -0000

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

Husband early onset AD 15 years ago age 58 posted by Anita @ 06:44 PM June 08, 2008

Anita — Sun, 08 Jun 2008 18:44:40 -0000

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

Husband early onset AD 15 years ago age 58 posted by love torn @ 03:05 AM June 04, 2008

love torn — Wed, 04 Jun 2008 03:05:40 -0000

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.

Husband early onset AD 15 years ago age 58 posted by measongs @ 09:31 AM May 23, 2008

measongs — Fri, 23 May 2008 09:31:57 -0000

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

Husband early onset AD 15 years ago age 58 posted by LauraL @ 11:44 PM April 22, 2008

LauraL — Tue, 22 Apr 2008 23:44:56 -0000

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!

Husband early onset AD 15 years ago age 58 posted by Missy @ 01:21 PM April 21, 2008

Missy — Mon, 21 Apr 2008 13:21:16 -0000

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.

Husband early onset AD 15 years ago age 58 posted by Stardust @ 04:42 AM April 21, 2008

Stardust — Mon, 21 Apr 2008 04:42:51 -0000

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.

Husband early onset AD 15 years ago age 58 posted by Anita @ 09:14 PM April 20, 2008

Anita — Sun, 20 Apr 2008 21:14:08 -0000

I have been reading alot of statements though not much on spouses. We decided at the beginning to tell everyone, friends and family, about being diagnosed with AD. It helped them understand as the desease progressed and their understanding and acceptance of his "our" struggles with AD was and is most helpful. A little background on Ron, he is a college grad with a BS in electrical engineering. He is 6ft 1in., 175 (normal), now 137lbs, well mannered, kind and considerate. He designed and built 8 homes, oil paints, welds sculptur, built beautiful furniture, built koi ponds, did the landscaping, all in his spare time. He also was diagnosed with Parkinson's about 4 years ago. I had to place him in a demintia facility October 18, 2006. He was falling alot, could not find the bathroom, and then he opened the car door going 70mph to spit. It was time, though the hardest thing I think I have ever done. I go every day and visit with him until he goes to sleep at night. Those who don't spend several hours with their loved ones miss the moments of recognition, the hug, the kiss,and the ever so seldom now "I love you". He hasn't been able to talk conversational talk for a few years. He cannot read or watch TV, but I do take him magazines to look at and tear pages out of, and I talk to him. Most of the time he knows me but there are times when his eyes are simply vacant. I had to move him recently to another facility this time to a board and care where they have only 6 patients. I had him in a large beautiful facility where they had 3 caregivers for 18-22 people, a med-tech, a nurse, a program director, a manager, etc. It was clean and very lovely but I had problems with the am crew. Last Feb. one of them shaved his eyebrows and eyelashes, they were not feeding him much breakfast or lunch, and would thoughtlessly leave wet pads in his made bed. Needless to say my patience had now reached the breaking point. Also the facility was doubling the care costs and with the rent I would now be paying $9592.00 per mo., and increase again in a few months. I simply could not do that.

Ron is in need of a lot of care now, as he cannot walk because of the Parkinson's, he cannot feed himself, he is totally incontinent, and hospice comes twice a week to bathe and help with his needs. About bathing, when he was home I had a struggle with that, in fact he refused to get in and I had to give him sponge baths. Then I asked a simple question, " why won't you get in the shower" and found out he was afraid of falling in the shower. He actually did not say that but pointed to the tiled floor and said not good may be ........ slippery I asked? He shook his head yes. I had two bars installed, one on each side, and an adjustable showerhead. We have a large shower area so I would get in with him, one more hurdle overcome. He still has fears of being hurt and said to the caregiver and hospice nurse last Tues. "Please don't hurt me."

In the larger facility I became acquainted with many people with different degrees of dementia. I treated each as my friend and though none remembered my name many sought me out when they heard my voice or saw me. One would want a hug and kiss, one would want to take me on a walk and hold my hand, etc. I always treated them with respect, asked how they were and told them how nice or how pretty they looked. Most of them could not talk sensibly but some could. The desease effected each one differently and it is a big job caring for those affected with AD, Parkinson's and stroke. I miss them and go see them once in a while, but my concern is for the love of my life (51 yrs) and now he has one caregiver for 3 patients and the care is so wonderful and loving, all the food is home cooked and they give him all he can eat. I am so thankful. Also the cost, in case your wondering, is half of what it was. My heart goes out to all of you dealing with these afflictions. Anita

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