quote:

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Originally posted by Billy G:

I don't know if her body functioning has anything to do with her mental capacities or not but about six months ago she stopped having her periods however, last week just before this setback she had some very minor bleeding as if she was starting back again. It hasn't developed into anything but, in the past when she did have one it seemed to effect her mental fuctions and it would take most the next month for her to get back to her old self again....

If anyone has any experience with this type of issue (the effects of monthly periods) with Dementia in women I would certainly like to hear what you have to say.

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Dear Billy,

I haven't posted for quite awhile but wanted to read this topic because like you, I'm dealing with a spouse - my husband - who was diagnosed under age 60.

Your question about Ronni's menstrual cycles is a good one. It's a topic I've never seen come up in all the reading I've done about AD - I suspect because, when women are diagnosed with AD, they're usually long past menopause. I'm not sure how old Ronni is but it's possible that she's just now entering menopause which is why her periods stopped. Even after they seem to stop, they might still come sporadically. Also, it might well have been the hormonal changes associated with menopause that caused her not to be her old self rather than the dementia (hormones do that to many women - even those without dementia). The dementia probably made it even harder for her to get back her equilibrium.

Anyway, whether or not she's menopausal or not, Ronni should be seeing a gynocologist for regular checkups, especially to check for the various types of "female" cancers and infections. It's possible that a gynecologist might also be able to comment on the issue of monthly periods with dementia in Women.

You might also check on the ADEAR (Alz Disease Education and Research Center of the NIA) website - www.alzheimers.org. They also have an 800 number which you'll find on the website.

Finally, I've seen notices in my area for support groups just for male caregivers taking care of female AD patients. This topic might be one that would be covered in such a group - if you can find one in your area. Here in the SF Bay Area, the one I saw was affiliated with Stanford Univ and the Palo Alto VA.

This message has been edited. Last edited by: Cathy Dodd,

Thanks for your comeback Eleanor.

I appreciate your response. You are probably right about her stage. I have read all the charateristics of the different stages and I think she is in multiple phases. Probably the closest would be a combination of stages 5 and 6 with more emphasis toward the 6th.

I know one day she will probably have to live elsewhere also. I don't know if I am ready for that but then again I am starting to feel the burnout. I WANT MY PARTNER BACK!!!

We just now got to where we can enjoy life and this has to happen. I retired a year ago and we had planned to travel to Europe when that happened. Unfortunately, that trip is probably out but we still go to Mexico and other places we can with our "Timeshare." The main reason for the hold on Europe is because we lost a lot of money with the drop in the economy over the last few years (along with everybody else). She had saved for years so we could go and spend about a month and see as much as possible. We were going to ride the Euro-rail and stay at B&B's. She can't travel that way and the B&B stays might be a little difficult since she needs assistance with "potty breaks." We need a more permanent base to use for that purpose. Public bathrooms are very difficult for us. Oh well, the dream was there and it was a good one. We'll just have to do what we can for as long as we can.

Billy G.

Good Evening;
Billy G. & Ronnie;

I am glad to hear that you went to visit Joan Marie & Alan. I just know by her posts she is a great Caregiver and would be kind to you.

I am not a under 6o Caregiver.

I was the Caregiver for Jim my Husband of 56 yrs, until Dec 29/03 when he went into a NH just 1 MIle away. He has settled very well, but I wished he still could be here,but Diabetese took over and made the Decision for me. I am now on Insulin..

Sorry to hear that Ronnie is slipping. Everything that you posted about was oh so familiar. I don,t know what stage Ronnie is in but seems to be the late 6th Stage. Sorry to say but
I am sure you already know E.O.A.D. persons go Faster in the AD Journey. Jim has had AD for 13 yrs.

I hope someone will come forward and Post re your Question. Maybe you check the ALzheimers Site and see if you can get any info..

Don,t stop taking Ronnie out, keep going as long as you can. I know you are a good Caregiver and that is all you can do. Re the drooling., Jim, doesn,t drool [yet] but his nose is like a tap dripping. I am always saying to Jim you need a Hanky attached to your nose. Jim never minds me wipping his nose as long as it is Gentle.


Now a visiting Caregiver, when I visit I usually stay for 4 -5 hrs. I do some Personal care, a walk, a coffee , a treat. So far Jim is okay with all the things I do with him. The next best thing to having him home. I have brought Jim home 5 times ---2 overnights. He is very good while at home.


Take care
Eleanor

Hi All,

Just wanted to update everyone. Ronni and I had a great visit with Joan Marie and Alan in Las Cruces a couple weeks ago. They are very nice people and it was a real pleasure meeting them.

Since that visit things have gotten a little worse with Ronni. I don't know what it is exactly but, she seems to have slipped some. When I talk to her or ask a question she just stares at me as if she doesn't have any idea what I said. I have to repeat several times and even then she seems to have difficulty grasping the meaning of my words. She has slowed way down in her walking. She was slow enough before but now it is as if she can't move. If I don't take her hand and lead her she will just stand there and not move at all. Or she will walk around in little circles like she is totally confused and doesn't know what to do. Also, last weekend we took a short trip for the day, out of town. While we were driving she fell asleep like she generally always does however, this time she drooled all over herself. She has never done that before. Somehow she seemed to realize it and woke herself up with it hanging down from her lip. I had to hand her a napkin to wipe her mouth. She acted sort of embarrassed about it. She has fallen asleep before and spilled a drink or dropped food, etc but, this is the first time with the drooling.

I don't know if her body functioning has anything to do with her mental capacities or not but about six months ago she stopped having her periods however, last week just before this setback she had some very minor bleeding as if she was starting back again. It hasn't developed into anything but, in the past when she did have one it seemed to effect her mental fuctions and it would take most the next month for her to get back to her old self again.

She is on Namenda (Mementine) and is at full dosage however, I don't think it is doing anything for her. I can't see any improvement at all. Maybe it is too late for her, I don't know. I'll give it a while longer.

If anyone has any experience with this type of issue (the effects of monthly periods) with Dementia in women I would certainly like to hear what you have to say.

Thanks,

Billy G.

Hi all, me again.

I just typed up a whole paragraph to post and hit a wrong key or something and it all just went away like "bang." So I will start all over again.

Joan Marie, glad you are taking Alan to the Center to get your time. Our Center here won't allow Ronni because she isn't old enough. You have to be 65 or older to go into the adult day care center.

Chris, glad you got a positive response to your ad in the church. Sounds like there are several people willing to spend time with Roger and I am sure her enjoys it. Ronni use to take the dogs and go for a 6 mile run 6 years ago and now we can barely make it around the block. Hang in there. At least he is getting the outside social. I know it is difficult to leave him but at the same time you need your vacation. Good for you. I know one day I may be faced with looking at that for myself.

Gabe, I'm sorry you have had such a bad experience with the church environment. There are even people in our church that are very pushy when it comes to religion. I generally ignor those and go for the "common folk" to socialize with. I am just glad there are people that like to help without having an agenda. Maybe one day you can regain your confidence in people that are also members of a church. Good luck.

Billy G.

You all almost make me wish I were in a church community again. It's been years since I felt that way. Don't ever think church "cults" don't exist...they do..and it has taken me years to get away..mentally and emotionally. But, at this point in my life.... you are making me wish I had that support...

Hi all,

As Mother's Day is winding down, I thought I'd write to the caring people on this board to wrap up my day.

I have to say that I've had a good Mother's Day, so my heart is happy tonight. Although we weren't expecting either of our kids home this weekend, our daughter and her family surprised us with a visit today. (They had gotten a new vehicle so wanted to show it off)! Both kids will be home next weekend, so I more fun to look forward to.

Things are going pretty well here. The blurb that I put into our church newsletter has produced some positive results. One fellow walks with Roger daily, and there's usually one more person that offers a walk each day. And I still walk with Roger, so he's staying active. I must say, though, that Roger's need for walking has become less. He's still wanting to walk as often, but his walks have become much shorter, for which I'm grateful!

I took Roger to respite care on Friday so I could have some time to myself, and that was good. I'm very grateful that he enjoys going to RC and actually looks forward to his time there. This coming Friday I am going to try an over-night stay, so am a bit weary about that. I have wedding functions to tend to with my son and his fiance, so need freedom for the weekend. I'll also need to be out of town in June when our son graduates from law school, so this first stay at RC will be a trial run.

I hope that all of you have had a good Mother's Day. I write so often when I'm having a down day, that I felt it only fair that I write and share a happy day, too.

A special wave to Joan Marie and Billy.....

Hugs from Chris

Hey BillyG... Finally getting caught up with the Forum today. Did send you an email in the interim and I hope it didn't get swallowed in cyberspace.

As for the Care Team you've found... what an excellent program! For now, we've found great help by using the local Senior Center to fill Alan's days and provide much needed respite relief for me. The way our Senior Centers work is to provide transportation, multiple activities, and balanced hot lunches... all at a minimal cost. Some days he comes home like a kid from school which could be anything from excited to just bored but, generally speaking, so far...so good.

Here's hoping you and Ronni are beginning to enjoy the warmer days of summer.

Joan Marie

Hello again all.

Joan Marie and Chris. I think I may have told you before about our "Care Team' that consists of people from our church. One of the younger women there felt it was her calling to obtain training in that area and start the teams for people in the church that could benefit from it. They are all volunteers and, for us, only serve a few hours once a month or so. We have 12 people that are on our team (10 of those are a couple) and for now they come once a week and spend from two to four hours with Ronni and they come take her to their home and then I pick her up there later. I play golf on Thursday evenings. At first they were coming twice to three times a week and taking her to lunch or a movie but it became too much for her so the time has been reduced. The team members seem to enjoy it and I certainly benefit from it. Obviously, some do a little better than others but that's ok. She gets to have her social activity and I get some time to do what I enjoy.

Chris, I think you will find the people at your church will probably be willing to spend some time with Roger. Especially, if they know him pretty well and they feel they aren't locked into a lot of time. The more people there are the less time they will have to spend individually and probably will be more willing. I sincerely hope you get the help from them. It is a blessing.

Joan Marie, maybe you can find similar help.

As for me, I know I need to get Ronni going to one of the respite places but I need someone else to take her and spend time with her there to get it working. If I take her she will think I am trying to get rid of her and will pay dearly for quite sometime.

We still have one more week to go for Ronni to get to the full dose of Nemanda. So far I can't see any change what so ever. I am not sure what to expect but there hasn't been any change over the last month. In some of the reports I have read in this forum, the person taking the drug would go from a 4 or 5 on the MMSE test to 20 to 22.

Well I think I have bored everyone long enough so will close for the evening.

Joan Marie, I have been considering taking a trip down your way next month before it gets too hot. I haven't fully decided because we will be going to South Dakota at the end of June and I don't know if we can afford both but, we'll see. I really would like to meet you and Alan. We need to go to Roswell and see my mother and sister. Going through Las Cruces is a little out of the way but it would give us something to do. I get so bored just hanging around here all the time. I'll send you an e-mail and let you know for sure what I decide. We would probably come down on Friday, stay the night and then head on to Roswell on Saturday to come home on Sunday. We could go to dinner Friday evening. Think of a good place to go. I'll leave that to you. Just be sure they serve chicken, pork or shrimp. Those are the only meat Ronni will eat. I'll eat anything so, I'm easy. Later ....

Billy G

Hi Billy & Joan Marie,

It was good to hear from you, Billy. I had been waiting to hear how things were going for you and Ronni. I'm sorry that Ronni wasn't able to be included in the testing, but at least you can know that you did your best in trying to get her included. I've learned to find comfort in knowing that I'm doing my best even though I can't change the outcome.

Joan, a few messages ago, you mentioned the need to make time for social activities totally unrelated to caregiving. I know you are right about that, and I'm working at meeting that need. I'm making progress in getting respite care arranged, and I'm feeling really good about that. We now have the in-dwelling catheters so Roger will now be able to attend respite care for a longer block of time, and I can then plan an out-of-town activity.

On Tuesday I went to a support group meeting and it was very pleasurable. This is only the second time I've attended a support group meeting, and this time proved to be much more beneficial than the first time. Roger attended respite care while I was gone, and he totally enjoyed himself! He was there for three hours and after getting home, he commented several times that he had really enjoyed himself. It is going to make it alot easier leaving him there knowing that he's comfortable there. I'm approaching this respite care thing in increments. Eventually I'm going to need to leave Roger there for a full weekend, so I'm working up to that gradually thinking that would be best for him.

Also, I composed a blurb to go in our church newsletter describing Roger's diagnosis and his need to be active. I asked for volunteers to walk with him suggesting they volunteer one walk per week. The newsletter will be coming out next week, so I'm anxious to see what the response might be. Maybe Roger's illness will help someone else become healthier by walking, who knows?!

Well, that's it for this day. Take care all of my cyber friends!

Love, Chris

Oh, gee Billy... So sorry to learn the research program didn't work out for Ronni and you. I know that must have been very disappointing. So many times it seems like there are more walls than doorways, doesn't it?

However, the Namenda "doorway" may yet prove to add to Ronni's life and, because she is so young, it may ease the way for an undetermined period of time. I know Mayo didn't give you a clear diagnosis but I have heard of others effected with the classic form of EOAD having surprising global success with Namenda. May it offer those same benefits for both of you.

I, too, have been looking at the assisted-living "solution" to provide respite or to cover me should I get sick or injured and not be able to handle Alan's needs as well as I'd like. It is a hard challenge and one that takes time and much consideration.

In closing, please do not apologize or think you are self-centered to not respond to many posts on the Forum. What you do offer is so very valuable because you allow us to see inside your life and I truly hope you also find comfort and support here. The fact is, there are many who do not post... who are lurkers for their own reasons... but they are learning from you and so many others just the same. Keep posting, my friend, you have no idea how many you are touching just by being "visible" and please know we are here for you.

Warmest regards to Ronni and to you... ...Joan Marie

Hi Chris, Joan Marie and all,

Thanks for your interest in our affairs. I seem to be so self centered I don't think about other people's problems. I do read what others have written and feel I need to respond but don't have much experience to give much advice. Even when I do I generally start talking about my problems and not addressing the concerns of others. Sorry.

Well things didn't work out for the research study. Ronni couldn't qualify. She had to score a 15 to 22 on the MMSE test and she scored a "0". The nurse practicioner was the one that administered it. She also said that during the study Ronni might receive a placebo which wouldn't do her any good anyway so, she suggested we just get on with our life as is. I told her I was holding off on giving Ronni the Namenda until we found out if she could qualify or not. She said I would be better off starting her on the drug because of the placebo issue.

She has been on the drug just over a week and isn't up to full dose yet. So far I don't see any changes. It will take another two to three weeks for her to get to full dosage so, I'll have to wait and see where we are then.

Chris, it's great that you are planning ahead. I am afraid that I may have to do the same one day. As you mentioned, it is very difficult to think in those terms. At this time Ronni is pretty stable and doesn't seem to be deteriorating much however, there are subtle changes. Since she has been on the Keppra she seems to be doing fairly well. She is is a fairly good mood and the "jerks" have pretty much stopped. Occasionaly, she will have some but nothing like before. What would we do without drugs?

Let you know more later.

Billy G

quote:

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Originally posted by CAOlson:
... All of this still feels so foreign to me, and each day I have to remind myself, once again, that FTD is a part of our life. Roger was always my rock and we were a team in every sense of the word, and now I'm left to shoulder everything. No, I'm not especially sad; I guess I just wonder how long it will take for this to really sink into my conscienceness?

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Hi Chris. I wonder that same thing, especially when the AD demon-child suddenly reappears. I don't know that we ever get used to it so much as our automatic responses come into play out of habit, out of simply trying to stay one step ahead of the game. And still, we can so easily be taken aback or thrown a curve we didn't expect.

It's clear to me you are already adapting and are learning the values of keeping busy. Nothing like painting walls or working in the garden to provide both emotional escape and a sense of accomplishment. Or at least that's how I benefit. With that said, I would also suggest you keep yourself socially involved on some level with others who are healthy, who have a world outside of caregiving. That also creates a balance for me and I hope it would do the same for you.

Well... it's time I leave the "screen" and seize the rest of this beautiful afternoon. Wishing you and Roger the best life has to offer today and everyday.

Take care and know you are thought of often. Joan Marie

Hello again, Billy... Okay, inquiring minds want to know. How did the Lovelace Research study work out for you and Ronni?

I did review the Lovelace Research website and they do appear to be on the leading edge when it comes to looking at the causes and resolutions of memory loss. What was your impression after actually meeting with them?

Wishing you well and hope you're enjoying our sunbreaks and rainbows!

Joan Marie

Good morning Billy and all,

Just writing to see how everything went with Ronni's testing yesterday. Will they be able to include her in the test study? I think we're all anxious to hear how things went for you. Yes, we all want to do the very best for our spouses and our families as we wrestle with this life altering disorder.

Yesterday I took another baby step and am feeling glad/sad about it. An RN came to our home last night to do an assessment on Roger so I can use a care cottage for respite care when needed. I'm waiting for the VA to provide the in-dwelling caths, and then I'll be able to take Roger there when respite care is needed. All of this still feels so foreign to me, and each day I have to remind myself, once again, that FTD is a part of our life. Roger was always my rock and we were a team in every sense of the word, and now I'm left to shoulder everything. No, I'm not especially sad; I guess I just wonder how long it will take for this to really sink into my conscienceness?

With our son's wedding coming up this fall, I know that arrangements need to be in place for Roger's care during that block of time. And by getting things in place now, we will both be at a comfortable place when that time comes. So, I feel that I'm doing the right thing getting respite care in place, but it's not something that you'd ever think you'd be doing for your spouse. I guess that's called life, huh?

Well, folks, I'm back to painting again today. I'm making huge progress painting in a family room in the basement, so I best get crackin'.

Love, Chris

Hi Joan Marie and to all others.

Just an update. I read in the Albuquerque paper that Lovelace Research is conducting a study of people experiencing memory loss and suffering from AD. I called and they are going to test Ronni tomorrow, Monday the 12th, to see if she can be used for the study. When I talked with the nurse practicioner the other day she said that they normally want people that test in the 15 - 22 range on the MME test. I don't think Ronni can score that high but maybe they will take her anyway, mainly because she is so young. They seemed pretty interested just because of that. Who knows, maybe they will start another one for people in her catagory. Hope it turns out ok. I keep trying anything I can to make her better. Maybe this will be the next miracle.

Billy G

Hey Billy G...

Hope this post finds you and Ronni doing well. Truly know what you mean when you say you "don't know if she is on one of the ups or whether the medication is actually doing something." So often it's two steps forward and one step back... ...with a sideways step thrown in just for good measure.

Just keep fighting the good fight, my friend, and know we're with you all the way.

Warmest regards (now that it finally stopped raining)... ...your fellow New Mexican, Joan Marie

Hi Joan Marie,

I haven't talked with the doctors at Mayo yet so, I don't know if we will be going back or not. The neurologist said we need to try this medication for a couple months to see how it works. It has only been a little over one month since she started taking it. And it took two weeks to build up to the full dosage. I will ask her primary here about a return visit.

It is so hard for me to determine what effect the medication is actually having. So far, other than the near absence of the myoclonics I don't know what it is doing. Since the disease causes ups and downs in mental and functionality aspects, I don't know if she is on one of the ups or whether the medication is actually doing something. I can't say that there is a significant change in her abilities but her mood is better. Again, this could be just due to another stage in the disease. I still pretty much have to do most everything for her. Plus a lot of the time she doesn't seem to understand what I tell her. I have to repeat many times and even then she doesn't always get it. Just have to give the medication its due and see what happens.

We went for a long drive Tuesday. We went to Moriarity and then south to Mountainair, then back to Belen and finally home. It was 200 miles on the odometer. So, don't be surprised if we don't just take off someday and come farther south and give you a holler. I really hate to do it during the summer but, I may get bored enough we'll just do it anyway.

Billy G.

Hey Billy... glad to see you posting. It does really help, doesn't it?

Although I personally can't provide an answer for your question regarding what I assume is "personal care" for your wife, I would suggest you get very specific with her doctor and ask for a referral to a home-healthcare specialist. There are many who suffer from MS and other neuro-degenerative diseases facing these same caregiving issues but you must be persistent and very frank with your questions.

Just wondering here... When are you and Ronni headed back to the Mayo Clinic in Scottsdale, AZ? That's a wonderful response to the Keppra and I'm wondering, especially since she is more stable now, if they are willing to pursue additional testing to define her losses a little better and develop a more pro-active treatment plan.

All versions of EOAD and related disorders that hit before the age of 60 seem to present the greatest diagnosing challenges. I know it must be difficult for you.

As always, looking forward to hearing from you... ...Joan Marie

Hi all,

Thought I would give a short update on my wife, Ronni. Yeah right, like I've ever been able to say anything in a few words. Hope I don't bore you to death.

As most of you know we went to the Mayo Clinic in Scotsdale, Arizona the last of January and first of February. We spent two weeks there. I think I mentioned that they thought she could be suffering from copper poisoning but, as it turned out nothing could be confirmed. Anyway, the neurologist also found some abnormal spikes in her EEG. He felt she could have a potential for seizures. He didn't feel she was having any now but could at any time. He called after we got back and prescribed Keppra for her. He said to try it for a couple months to see if there are any changes. Just prior to us going there Ronni started having major twitches and jerks in her arms, legs and even her body. It mostly occurred when she was at rest or asleep. She would rock the bed somthing terrible at night. Actually, it kinda lulled me to sleep. I later read that these are called "Myoclonics" (I think that's right) and are typical with AD. They are not serious unless they get so violent that the patient will actually hurt themselves by hitting something when they jerk.

Since Ronni has been on this drug her "Myoclonics" or jerks have become almost non-existant. I can't say that it is the drug but it sure seems to be. Also, she seems a lot happier. When people ask how she is doing she will say she is doing great. That also could be that since she went to Mayo she just feels better anyway. But, whatever the reason, she has been in a pretty good mood lately.
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I won't do it now, but later, I may describe my experiences taking care of a younger woman (dealing with female issues) and I would like to know how many men out there may be having to deal with the same issues. Ladies, I may be asking for your adice also. It seems nowbody I know here has ever had to deal with some of what I have. Either that or they just don't want to talk about it. I haven't even been able to get help from female doctors or nurses. Anyway, tell me what you think.

Billy G