I recently stumbled on to this discussion board and am thrilled as I was feeling like I am the only person out there with a family member with early onset Alzheimer's! I am the primary caregiver for my former step-mother (long story) who was diagnosed four years ago at age 49.

Does anyone have any other websites that are of value for dealing with a family members with early onset alzheimer's?

Welcome, Marit! So sorry this has happened to your husband and you! I'm glad you found us - this is a super bunch of folks, many of whom with experiences like yours. I hope you will stop in often and let us know how you both are doing. If you have questions or just need to talk - we're here 24/7.
Many blessing to you both!!

Marit welcome into a great family of caregivers. I am sorry what you and your family are going through...And a retired officer....Wow Just retiring is bad enough but add this to the mix....I come from a family of law enforcement too. Not pretty when they retire, no more adrenaline rushes ect.
What type of changes is he going through? Meds might have to be adjusted. Insist that there are more tests done to his doc. Did he have a scan yet?
Dont take what he says to heart sweetie this isnt something he is aware of...as many of us say "the edit button is now broken"....Marit know your among friends here with alot of answers (answers doctors dont even know sometimes) A big (((hug))) goin out to ya!

I am a new caregiver and need some help coming to terms with my 62 year old husband being diagnosed 15months ago with alzheimers. I had suspected something was wrong for sometime and eventually was able to get him to go to the doctors.He has not had any illnesses in his life so is not used to going to doctors and also did not think there was anything wrong with him. The doctor told him but he still does not believe there is anything wrong.I am unable to talk to him about it. He was in Law Enforcement for 36 years and always a very capable and responsible man.
I am now watching him disappear and it is very hard to cope with He is on medication but I have noticed changes in him in the last 6 months.
We have a family and they are also finding it difficult.
I feel so helpless and alone. We have just come back from a trip that he has always wanted to do but he became confused and distressed and I am now regretting going.
I am hoping he will settle now we are home

Billy, I am sure you know if the roles were reversed your wife would do this for you.Hope you continue to experience improvement with her meds.One day at a time

Hang in there, Billy! Your quiet loving care speaks volumes about how lucky Ronni is to have you looking out for her! So glad her brain has settled down a little so both of you can enjoy a little peace in your difficult days. Do grab a round-tuit so's you can change out the bed for a hospital bed - those things are really a better mousetrap! Blessings to you both!!

Hi all,

Not much to report but thought I would check in and catch up. Hospice is coming to the house now. I am not sure what good they are doing. Granted she gets a bed bath twice a week and she is visited twice a week by a nurse plus I get free diapers and other little goodies. I also received a wedge for the bed to get Ronni up from a flat position and when I get around to making room for it I can also get her a hospital bed.

As far as her condition she seems a little better than a month ago. I am thinking I may have finally gotten her meds somewhat straightened out. At least she isn't deteriorating like she was and also she hasn't had any more seizures, thank goodness. So for now we are holding our own.

I hate working but guess I just have to deal with it.

Well, later.

Billy G.

Hey, Billy ........ Glad to see you got back home safely. And, I hope everything went well at the funeral.

That was a long time to be driving; you must be tired.

Sorry Ronni is having a time of adjusting to being back home. I think BG might be right ... give her a few days.

Billy Im so glad your back together again I dont know anything else but the applesauce and pudding for the problem at hand if you have to grind them up...(was Ronni like this before the NH trip?) If not give her some time I went through this with my MIL after her stay and it was just temporary. She perked up after a little while back in the safe and familiar place called "home" Does she eat soup try spooning smaller pieces of the pills with her soup I found that works too since she just swallows the soup.

Quick note;

Hi All, I made it back and Ronni seemed to fair ok in the nursing facility. My son visited and said the staff wasn't very attentive the first day but after he hunted down a nurse to get some water for his mom I guess they decided they better get with it because now someone was checking up on them. When I went to get her on Sunday she was sitting in a Hospital recliner in the "Day Room". She seemed to be doing well enough. The nurse I talked with said she didn't do so good about drinking but ate ok and she squealed when they took her to the cafeteria. She doesn't like being left alone nor being around strangers.

Since she has been home I have really been fighting her to take her medicine and to eat. It is almost as if she has given up. We'll see how the weekend goes.

I haven't found anything yet that will cover up the taste of her medicine. Even Pudding doesn't work and I can't get her to just swallow it. She wants to chew it like food and then gages on it. Any suggestions?

Billy G.

Billy,

My heartfelt condolences to you on your sister-in-law's passing. I had a neighborhood friend from NY who passed from agent orange also. Spent 3 years of hell in Nam and 12 yrs. later, he was gone.

Have a safe trip.

Sandy

quote:

Originally posted by Billy G:
Also, I found out Saturday morning that my sister in-law passed away Friday evening. She had been very sick for many years and it was expected however, it is still hard to except. She somehow ingested some "agent orange" when she was a kid. It is the stuff used to defoliate in areas they don't want plant growth. They used it a lot in Vietnam. Anyway, she grew up in Chandler Arizona and some of that stuff had been used around the orchards there and it got into her system. Basically, over the years it has eaten most of her insides away and what wasn't eaten away had to be removed because it wasn't working. She had been in and out of the hospital most of their married life. The latest, she had a breathing tube keeping her alive so, it was only a matter of time.
Billy G.

Again, it is always great to her from everyone. Well, I am new to this Hospice thing but so far I think it will work out ok. The bed did not get delivered. I found out today, 5 days later, that I am the one that has to call and arrange for it to be delivered. Another of those "Here call this number" thing. Why couldn't they just do it and tell me what I have to do. Oh well.

Also, I found out Saturday morning that my sister in-law passed away Friday evening. She had been very sick for many years and it was expected however, it is still hard to except. She somehow ingested some "agent orange" when she was a kid. It is the stuff used to defoliate in areas they don't want plant growth. They used it a lot in Vietnam. Anyway, she grew up in Chandler Arizona and some of that stuff had been used around the orchards there and it got into her system. Basically, over the years it has eaten most of her insides away and what wasn't eaten away had to be removed because it wasn't working. She had been in and out of the hospital most of their married life. The latest, she had a breathing tube keeping her alive so, it was only a matter of time.

The reason I brought this up is because I am going to use the 5 day respite at Hospice. The funeral is on Friday. I will be puting Ronni in a nursing facility tomorrow evening, Wednesday evening, and I will leave and drive to Arizona on Thursday and come back on Saturday and then go get her on Sunday. It is about a 9 or 10 hour drive each way. It will be the first time I have been away from Ronni in probably 4 or 5 years. My daughter may go with me but even if she doesn't it will still give me some time to unwind. I wasn't sure if they were going to find a place for Ronni or not but they finally did. I don't know how she will take it but, it doesn't really matter. She will be in a room with two other women and will probably raise cain but oh well, they can deal with it.

Obviousely, I wll feel a little guilty but not too terribly much. She will be in good hands. I am more concerned as to whether my car will make the trip or not. It needs the rear wheelbearings replaced but will have to wait until I get back.

Everyone have a great weekend and if you don't hear from me again I may have just kept on going and not stopped in Arizona. Just kidding, everyone have a wonderful Memorial Day weekend.

Billy G.

Hi Billy so glad things are doing a little better your way. Has Ronni had some changes in meds lately that could explain what is happening-you did say something about meds. I know Mike had some horrible reactions to some meds the Dr. tried around Christmas. He has been doing much better just on all his old meds. As for the bed I hope it helps can you put a cot single bed(something easily moved out of the way) beside it for you?I sure hope hospice works well for you. Please keep us posted on how you and Ronni are doing. Gypsy

Billy, thanks for checking back in. I'm glad to hear things have been a little better.

Hospice sounds like a Godsend to you at this time. Take advantage of it, as I suspect you will!

Keep on keeping on, Billy. And, if Ronni rests better in the new bed, so be it, even if you do have to move everything to the garage. And, where will YOU sleep? Can your son help you move the furniture?

Let us know how things continue to go, Billy, and thanks for checking in.

Thanks All,

Things have been a little better since the last seizure however Ronni still isn't back to her old self. I have to think it is the medication but could also be the progression. It just seem like her turn for the worse was very sudden. Today, she is back to eating most times and she is in and out of cognance but, she cannot walk anymore and when I try to sit her up it is like siting a baby up and watching it struggle to stay up. Hospice came today and determined that she does qualify so they will be coming back. They also ordered a new bed for her witch is a royal pain because I wans't prepared to move furniture tomorrow. I don't know what I am going to do with our queensize bed. I guess it will go out in the garage with all my son's stuff until her moves out.

I guess Hospice runs for 90 days and then they do a reevaluation then go for another 90 days, etc. At least it is all free because it is part of Medicare. However, I will still have to keep the agency for regular care but I can have Hospice volunteers come occasionally for respite for me, AND IT IS FREE. I can also put her in a facility for 5 days at a time for me to get away or watever, AND IT IS FREE. I can even go to their facility and get a massage on myself, AND IT IS FREE. Sounds like a cool plan, huh? Just have to see how it all works out. I can only hope that the medication gets strightened out and maybe Ronni will get back to being a little like her old self. At least the walking part. I certainly hope the yelling and squealing don't come back. So it is back to "wait and see".

Hope all of you are doing ok. Anyone with big plans for memorial weekend?

Billy G.

Aww Billy I am so sorry your going thru this and no I dont think you riding out the seizure was cruel I remember the first time I saw one (kinda freaked me out) but thats exactly what you have to do, sit it out. Know that you and Ronni are in my thoughts.

Hey, Billy. I'm so sorry to hear this latest news about Ronni. How is she doing today? And, how are YOU doing?

Keeping you in my thoughts. Keep us posted, Billy.

Billy, I'm so sorry you and Ronni are going through this...bless your entire heart. I hope that hospice can give you some much-needed relief and make Ronni more comfortable. Your heroism in the face of this no win disease is humbling. I salute your common-sense, loving approach to caregiving and hope that both of you will be spared more suffering.

Please keep us updated as you can and know you are in our hearts and thoughts.

Billy...

Just wanted to thank you for posting. I'm sorry that you are going through such a difficult time these days, and please know that you are in my thoughts and prayers.

Take care!

Hi! It's me again, the ole' windbag.

Well let's see. Since May the 7th when I last posted things have gotten really hairy. On the 10th Ronni and I went to some friends for dinner. Just as we sat down to eat Ronni had another seizure. Needless to say it scared the hell out of our friends. Me on the other hand, since I am a seasoned vet of experiencing only one before, knew there was nothing to be done but to protect her and let it ride out. It lasted about 1-1/2 minutes. The one before was only about 30 seconds. I had her sitting in her transport chair and after it subsided I laid her on the floor. We then went ahead and had our dinner. You may think that I was being uncaring but what else are you going to do? She couldn't be moved for awhile and she was safe on the floor. A little bit later she started trying to sit up so I put her back in her chair and fed her some applesauce and later a little ice cream. We left early because we were supposed to take my son to the airport at 5 am the next morning.

I got Ronni out of bed at 5 am, took her to the bathroom and bam, she had another one. This one also lasted for over a minute. Well my son wound up having to drive himself and leave his car at the airport because we couldn't go. He helped me carry her to bed. She stayed there all the rest of the day. She did get up for awhile around 2 pm or so and sat in her recliner until about 8 pm when I put her back to bed again. She stayed in bed all day Friday until I got home at 4:30. I was afraid the little petite CG wouldn't be able to handle her if she was up.

Saturday and again today she pretty much just laid or sat around. I did get her up late Saturday and again today and let her sit in her recliner. But for two days now she has acted like there is nothing there anymore. She did act a little more coherent Saturday but today was really a bad day. She did perk up a little when our daughter and granddaughter were here but mostly just because my daughter and I were talking about her sour face. She did manage to smile a little.

The owner of the agency came to see me late Thursday evening. As a result of that meeting she called in the troups. She called Hospice and made an appointment for an evaluation for this next Thursday. We'll have to see what they have to say. If she is at that point then they may come in and somewhat take over her care for awhile.

It seems these last two seizure really knocked Ronni down. She can no longer get up and walk around. I all but have to carry her and the whole time her legs keep buckling and she keeps trying to go down. She is also having a very difficult time just sitting up straight. She has a tendency to want to fall to the side or backward. Just like a young baby trying to sit up for the first time. Also, she has that real blank expression as if there is nothing at all in the head except empty space. And, a lot of the time she is just staring off into who knows where. I can move my hand in front of her face and sometimes she will flench and many times she doesn't. It is as if she sees nothing and hears nothing. Unfortunately, I think the time is getting much closer than I had hoped for. I just don't know what to expect next but I know it isn't going to be good.

Billy G.