My name is Barry and this is my first post. Even though I’ve read a lot of the posts and stories on the various segments of the board I haven’t posted in the past because I’m not comfortable doing this. I’m only posting now out of desperation for some possible feedback and maybe a few answers. This isn’t easy for me.

A little background: On February 24, 1994 my father passed away after a seven month bout with brain cancer. He was 68 years old. My mother was also 68 years old at his death. From February 1994 until November 2005 mother lived alone in a small town in NC. My mother and father were wonderful, honest, hard working simple folk with little formal education (both 7th grade level). Dad preached in small Baptist churches and mother was a homemaker so there was never much money on hand. To put it into perspective mother and dad lived in what society categorizes as lower class citizens due to their income and assets. In other words they were poor. However, while dad was living they never asked for nor received any kind of Federal, State or Local assistance, with the exception of financial aid from the Southern Baptist Association to help with dad’s medical and hospitalization bills during his battle with cancer. Dad’s medical bills from the time he was diagnosed with terminal brain cancer in September 1993 until his death in February 1994 were, from my understanding, close to $750,000.00.

Dad had always managed the business affairs so mother had very limited knowledge of and abilities to manage a household. In addition, mother has never had a driver’s license. After dad’s death our immediate family, which consisted of mother, my oldest brother Danny who lived in NC about 20 minutes from mother, me I was in the Navy and stationed in Washington, DC and my younger brother Tim, who is a Baptist minister and also lived in NC about 2 hours from mother.

We held a family meeting and decided that for as long as mother lived all of her business affairs would be discussed and handled as a family unit. I agreed to be the principle player with mother and make sure she was able to live as comfortably and as independently as possible for as long as possible.

In November 2004 my wife and I built a home in Florida and moved there.

Recent past to current: Around October 2005 my brother Danny, noticed that mother was having trouble remembering things, e.g., taking her prescription medication, misplacing or losing things and acting in strange ways that he had not seen before. He called me in Florida and explained his concerns. I came back to NC to visit with mom and see what he was talking about. During the visit I noticed some of the same things Danny spoke of and talked to her about them. I asked her to let me take her to see her doctor but she refused. She was then and continues to be a very strong willed person. She convinced me that it was just old age (80 years old at that time) and everyone did similar things at her age. However, I was able to convince her to let me set up some things for her that would help her remember to do certain things at certain times. I got her a medication disperser with the days of the week on it and a number of calendars and placed them with notes/reminders around the house. She said she would use these things but didn’t think they were necessary. Danny and I discussed the situation and he said he would watch her as closely as he could and see if the reminder things helped. I then left to go back to my home in Florida with the understanding that my wife and I would come back to NC and get my mother and my wife’s 85 year old widowed father the first week of November and take them back to Florida to spend the Thanksgiving holidays with us. When we arrived back in NC around the 6th or 7th of November 2005 Danny met me at mother’s house and said he didn’t think she would be going home with me as she was acting really weird. I talked to mother about it and she said she was sick and could not go home with us. I could tell from her actions that something was really wrong. Since my wife and I had arrived with plans of staying in NC only long enough to pick up my mother and my wife’s father we had very little clothing. We decided that with the situation being as it was it would be better if we made an immediate trip back to Florida and get the necessary clothing and make arrangements for someone to take care of things around our home in Florida while we were away. We planned to spend the rest of November and December in NC with family. We did this turnaround to Florida and back to NC in a matter of a few days.

After arriving back in NC and spending a few days with mother I could tell that her problem was more than she was letting on. I finally talked her into letting me take her to see her doctor. Her doctor examined mother and sent her for a battery of tests after which he formally made the diagnosis of progressive dementia, probably early Alzheimer’s disease. At that time she scored 24 on the Mini Mental State Examination (MMSE). Since November 2005 her scores have been 18, 14 and as of her last MMSE in November 2007 was 11 out of 30. Her doctor didn’t give her an MMSE during her last examination in May 2008. When her doctor told her her diagnoses she looked him in the eyes and said that she did not have dementia. She said she was just getting old. She told her doctor that maybe he had dementia. She still maintains that position as of this writing. Her doctor told us things would get progressively worse and she would need assistance, lots of assistance at some point. After considerable thought, prayer and discussion with family members my wife and I decided to sell our home in Florida (it still has not sold) and move back to NC. I would live with my mother and care for her and my wife would live with her father, and care for him. My mother and my wife’s father live about 30 minutes from each other. We rushed back to Florida packed up our belongings. Some we stored, some we brought back to NC with us and some are still in the house. We put the house up for sell and headed back to NC where we are today. My wife of 37 years and I talk daily on the telephone, try to have lunch at least once a week and try to go away for a night or two every four to eight weeks. That’s how we have lived for the past 31 months. Who said life would be easy?

Sorry to be so wordy but feel the need to try to explain or maybe just unload which is very difficult for me?

Here’s the reason for my desperation and the need for some input and or advise. Mother’s condition (most days) is difficult some days very difficult. Prior to each visit to her doctor I write him a note and try to explain mother’s condition. Here’s a portion of my last note to her doctor about a month ago; “Dear Dr. ?,

It’s hard to believe that it’s been 30 months since this Alzheimer’s journey began and I moved in with mother to provide her care during this extremely trying time. Some days I feel as though mother will still be standing after I’ve bit the dust. But this letter is about her and not about me.

I’m going to break this down into two parts.



Positive or good:
• From a pure memory stand point I don’t think she’s lost much since her last visit.
• She still remembers most of the family most of the time.
• She can still feed herself with assistance, help bath herself and communicate her wants and needs.
• She still has a pretty good quality of life living at home.
• There’s days with smiles and laughter and happiness and it makes us all feel good.
• Her appetite is good. Her weight remains about the same.
• She sleeps most of the nights and a lot during the day.
• For the most part her personality remains in tack.
• Up to this point she does not wander out of the house. However, in the late afternoon or early evening she gets restless and paces a lot. I think that’s referred to as sun downing by the Alzheimer’s folks.


Negative or not so good:
• Her incontinence (kidneys) is getting worse. Multiple accidents mostly at night.
• Her gate and movements are really slowing down and she’s starting to bend over from the waist.
• Her balance, especially after getting up from a sitting or lying position is declining and she seems really confused at times.
• When she eats it’s very slow and deliberate and sometimes she gets slightly choked.
• And this issue has me most concerned. She’s referring to me more and more as her husband or my dad. I don’t know how to say this but she stares at my groin/crotch area a lot. I don’t know if this is sexual in nature but it makes me extremely uncomfortable. I think in her mind I’m becoming more of her husband than her son. I don’t know how to handle this. Do you have any ideas or suggestions? So far it’s just been looking and nothing else. But I’ve read on the Alzheimer’s web site that this could get worse.

Mother is still very feisty but not too combative. She still maintains that there’s nothing wrong with her memory. She is fighting this disease with everything she has. She refuses to accept it and tries her best to convince herself and others that there’s nothing wrong with her. At times I think that’s a good thing. At other times I think that not such a good thing. But it is what it is!

For the most part we’re still managing here at home but it’s becoming more and more difficult. However, we’re still not ready to discuss placing her in a managed care facility at this time. I have visited four facilities in the area and discussed her medical condition and financial situation and three of the four were extremely helpful and indicated that when the time comes they felt sure they would be able to help us. Mother is already on full Medicaid benefits and the folks at DSS have been very helpful, especially Ms.?

Please keep mother and the rest of our family in your prayers. We will do the same for you and your family.

As always we appreciate everything that you do.

Very respectfully submitted,

Barry ?”

Her doctors response to me after mother’s visit was that she was on a plateau or level that was just prior to what is considered as last stages. However, he said that there was no way of knowing how long this stage or plateau would last. I talked to her doctor about placing mother in a managed care facility. I told him I thought she would resist because in her mind she can still manage things which she can’t and hasn’t been able to for a long time. If I heard him right he said that what would happen when we decided to place her would be that if she resisted to the point of causing too much trouble then she would have to be medicated to the point that a facility could manage her. Just the thought of her having to be medicated to the point of having absolutely no quality of life is repugnant to say the least. However, my ability to provide her the care she deserves and requires is becoming much harder. I feel so hopeless.

Since that note was written mother’s condition has worsened considerably. However, I know that on most days or parts thereof she still enjoys her quality of life and wants to remain where she is. My problem is my ability to continue to provide her the proper care that she deserves. How is it possible to do the right thing or make the right decisions under such enormous feelings of guilt, shame, inadequacy, incompetency, anger, resentment, anxiety and depression? Its gut wrenching trying to decide if you’re making decisions based on what’s good for you or what’s right for your love one.

My brother’s and I met and discussed the situation and we are all three torn about what to do. I want to do what’s right by mother but I can’t bear the thought of placing her in a situation against her will. I visualize the image of driving off and her crying to go home and this to me is beyond comprehension. Is it possible to love someone to the point that you just can’t or want make the right decision? How do you get through this? I’ve talked to my doctor and he said that I’m fighting bouts of depression and exhaustion. He’s treated me for both. I’ve never felt so hopeless in my life. I don’t consider myself weak. I spent 21 years in some pretty tough situations, e.g., Vietnam, Beirut Lebanon, Libya to name a few. Nothing and I mean nothing that I have ever done has come close to the turmoil that I’m now feeling. How stupid or silly of me but is this a man thing?

Even writing this makes me feel like a weakling. I don’t even know why I’m writing this in the first place. I just don’t know what else to do.

Please no pity responses.

Barry,
Thanks, I needed to read this. You have answered a lot of questions I've had about my mother. She has not progressed as far along as your mother but she's slowly getting there. I will pray for you and your family! Derrald Choate

Thank you Derrald. Your mother and your family will be in my prayers as well.

Barry

Dear Barry, your moms MD is not being very realistic or practicle about the medications that can improve your moms mood. My mom takes respiradol as a mood stabilizer and it really helps her to be more in control of her emotions. She is not screaming in anger over, without being a zombie. Respiradol allowed my mom to stay in her own home for an addional 6 months. There are alot of good medications and it is sometimes hit or miss what meds work with each person so a knowledgable MD is priceless.

Dear Barry,

You are right. Making the right decision on whether to place your mom in a facility or not is very difficult. It sounds like you care about your mom a lot and will only do your best in providing the best care for her. It is important to remember that what matters is that you are doing your best.

Taking care of someone with AD is very difficult and may get complicated, demanding, and time-consuming. Sometimes, you may need to seek outside help in order to be of better help to your loved one and there is nothing wrong with that. This outside help could be, family or friends helping out, hiring someone to help out (in-home services), day care center, or a care facility. Just as your doctor advised, I am also concerned about your welfare and on how you are dealing with the stress of taking care of mom. If you don’t take care of yourself, your health may be in question, and you may not be able to provide the best care for mom.

It might be beneficial for you to meet with a social worker to discuss your mom’s care. You may contact the local chapter to find local resources, such as, social services, facilities, day care centers, in-home services, support groups, etc. In addition, you may call our 24-hour helpline to consult with a Care Consultant. Thank you for using the Alzheimer's Association Online Community. Please continue to use the Message Boards for your questions, concerns, or updates.

Sincerely,

Mini V.

Barry-
Placing a loved one is one of life's most difficult decisions. My heart goes out to your family. My Mom is in the later stages of dementia and our decision to place her was decided for us when she broke her pelvis and never regained the ability to walk. My Mom always was a private person so we assumed that she would dislike the NH and it's lack of privacy-add to that she goes completely off the wall anytime she is hospitalized and we thought for sure it would be a recipe for disaster, and at first it was, she was basically "kicked out" of the first NH and in desperation we ended up with a place kind of by default. The second home turned out to be a God send for her and for us. After an adjustment period (about 2 weeks) she did wonderful. In fact last night she told my sister how much she likes it there and that everyone is so nice and she likes that she is never "alone". My Mom always wanted us around and took to calling us all about 100 times a day prior to her fall, always wanting to know if we were ok and making sure nothing had happened to us. When she was living in the ALF she was all alone in her apt. they would check on her periodically but at the NH there is constant activity and the hall lights are on and her door is open ( she has a private room) - So after all the soul searching, heart rendering discussions about "what should we do about Mom?" we realize that the decision that was made for us by her fall was a blessing in disguise. Good luck with your journey, you and your family will be in my thoughts.

Thank you all for your advise and kind words. I guess the bottom line is you do your best and try to accept it at that.

Very best regards to all of you.

Barry

Dear Barry:

I just read your post. I am an RN who has a mother and step-father who have dementia.

First question I have, does your mother see a Neurologist or a primary care MD for her dementia?

If she does not have a Neurologist, this will make a huge difference in the approach to formatting an asssertive plan of care for her. If she doesn't have one, I would strongly recommend you do obtain this specialist.

It sounds as though you've been thrown back into the lake without any oars to paddle the boat.

Neuro is by far best at diagnostics, at knowing what is advancement of disease or attributable to something else, (sometimes surprisingly so); they are also by far best with medication to assist the patient and make the quality of life a bit better.

Of course your mother no longer has judgment or reasoning ability as she did prior to her illness. And it is most common for the dementia patient to have absolutely no insight into their condition. One cannot use logic or reason with them as they no longer can process this approach.

I am going to assume that your mother has been checked for other causes of her progressing condition? Electrolytes, full chem panel assessing liver and kidney function, CBC, Thyroid, B12 levels, and also importantly; urine testing to rule out a "silent" urinary tract infection?

Silent UTI's are quite common in the elderly female. They have little or no overt signs - no pain, no burning, no odor - yet the infection is still there.

Quite commonly, the only sign of a silent UTI, is a change in behavior, cognition or function. Once treated, there is usually dramatic improvement back to baseline.

There is a book that I have personally not read, but comes recommended by other Forum members. I believe the title is, "The 36 Hour Day." Evidently, this book is comprehensive and covers all aspects of the disease and caregiving.

This is a confounding disease because of the areas of impact. It is a process and there are no shortcuts.

We are ALL soldiers in this battle. And of course, it is worse than a nameless, faceless enemy, because we love the person who is afflicted. And, we are the responsible adult children trying to balance our loved one's needs while trying to balance and run our own lives.

One of the most frustrating aspects of caring for a loved one in this situation, is that lack of assistance secondary to financial issues.

My parents lived thru the depression, worked very hard and saved what they could. However, they are being completely wiped out and will soon lose their home. Unfortunately, I am not wealthy and am unable to assume their care costs of over $10,000/month for the two of them.

Medicaid and Medicare do not offer at home care, so when that level of care is needed, many elders find themselves in nursing homes when they yet could have been in their OWN home with an aide. This just seems so dreadfully inappropriate.

I sense your not wishing to write on the Care Givers Forum on the Message Board. But despite the many personalities, there is great support and a lot of good ideas and common sense than can be winnowed from the writings on that space.

Also, don't discount a support group in your area. No, no; you don't get off the hook that easily - big strong men ALSO do indeed attend these groups. It's not at all about people sitting around wringing their hands and weeping.

It's about a group of people all in the same situation sharing problems, solutions, ideas and what is available for assistance in their community. Try it, you may be surprised.

There is so much that can be done with Sundowning, with incontinence, with approaches to different challenges - and we're all there on the Message Board at the Care Giver's Forum. Come on over and let us know what specific challenges we can assist you with.

And as for placement . . . . this is something I never wanted for my mother. However, eventually the time came when it was necessary not only because of evolving dementia; but because she also was drastically failing physically. It was very difficult and I had many sleepless nights.

But, I finally found a marvelous nursing home that is actually non-profit and their care has been truly marvelous. We are blessed.

I wish you well and hope you are able to get all those ducks in a row. Let us know how you are, we will be thinking of you and your mother. In the meantime, we are here on the Caregivers Forum side of the Board.

For Johanna C.,
Thank you very much for taking the time out of what I know must be a very busy and hectic schedule. One never knows who’s on the other end of these chats/emails but for what it's worth you seem (as do most in this forum) very legit and concerned. I’ll try to answer the questions you have relative to mother and her medical care. No she has not seen a Neurologist. However, I’m more than pleased with her doctor. He’s been mother’s doctor for a long time and I know that he’s doing everything possible to provide mother the care that she needs. It’s unfortunate but the reason I know he is very knowledgeable about Alzheimer’s disease is because his wife (early 60’s) has the horrible disease. He’s done all the test and more that you spoke of. In addition he does CBC every 6 months. Since her diagnosis he has found that on one occasion she did in fact have a kidney infection and that was treated in short order and cleared up. If I thought for one minute that a Neurologist could do more I would arrange for her to see one. I’m not trying to be an Internet doctor but I continually read everything (that’s from reliable sources) that I can get my hands about Alzheimer’s disease and I speak to mother’s doctor frequently. I always go to him with prepared questions and what ifs and he always give me good answers or points me to the source to get the answers. Up to this point I know that he’s doing a good job. I think that if he thought mother would benefit from a Neurologist visit he would send her to one. But, I’ll ask him about that possibility.

I have read The 36 Hour Day. It was originally written by some heavy shooter out of the Johns Hopkins system some years ago with more recent updates. And yes it does contain some useful information. Some I have used myself. But I don’t have to explain to you about every individual Alzheimer’s/dementia case is a stand-alone situation with no set rules to go by. I just try to get thru each day as they come. My original goal for mother was to keep her at home for as long as possible and that’s still my goal. However, I must not and will not let feelings stand in the way of what’s best for her and that’s my dilemma. Which is it! As one wears down (mother and me) my original goal of keeping her at home for as long as she knows family is fading. Her body and my ability are both clouding my original goals and they seem to be fading.

I’ll admit I’m guilty of the “men don’t cry” syndrome and that in itself makes life harder. I’m just stupid that way but changing is hard to say the least. And I too know the rule that if you don’ take care of yourself you can’t take care of your mother. Easier said than done. Especially for a person with an extreme “white-coat issue”. You know what I’m talking about.

Even though I don’t post on the board I do read this one as well as some of the others and yes it does make life a little easier knowing that you’re not the only one dealing with some of the crazy issues that come your way. However it’s unfortunate that anyone has to go through any of this but as the old saying goes “life’s not easy”!!!!

I’ll not take any more of your time. For what it’s worth, if you are who you say that you are and I think that you are (does that make sense?) and you do what you say that you do (RN) then you deserve the highest of gratitude both from society and the loved ones that you care for.

My very best regards,

Barry

Dear Barry: Another wary person. I too am quite careful re cyberspace communication. One never knows what loonies lurk.

I am indeed an RN with a Masters Degree. I spent over 20 years as Administrator of Patient Case Management in various medical centers. My responsibilities encompassed Social Services, Discharge Planning and Utilization Management. Prior to that, I was Charge Nurse on medical and surgical units.

As a person, I was usually quite organized, logical and was able to slay any dragon anywhere at any time.

Well, I can attest to the fact that all my experience and all my education did not matter one whit when it came to this disease. Nothing in this galaxy could have prepared me for the depth of my mother's dementia and what I was going to experience. She is afflicted with FrontoTemporal Dementia and it's ALL about behaviors.

Initially, I thought there was absolutely nothing I could not manage. I knew there was an answer, a solution for everything - no exceptions.

Wrong. Another life lesson learned.

Initially, before down became up and up became down, I had significant challenges in regard to my mother, but I was more or less still in the saddle.

There are only two consistent dynamics with dementia; one consistence dynamic is the lack of consistency and the other is the ongoing decline of our loved ones.

Letting go. There's the big one I had a very hard time learning. That took me somewhere between five and six years into this disease. And letting go of trying to throw my body in front of so many speeding trains did cause me some distress. I was after all responsible. And I ALWAYS had everything under control in the "before" days.

Learning to trust, that was another big one. Learning that not everything has a "good"answer or outcome. Learning that I too could become emotionally exhausted to the point of inertia - another hard one. Learning that I was not super-person. And most of all, learning to reach out, at first listening and then communicating with others - that was initially difficult but also as I learned to let go and trust a bit more, it was one of the better changes.

None of us exit this experience the same person as when we entered it. It changes all of us in various ways.

It is very good that you do your reading and research utilizing the credible sites. It's a wonder Google didn't begin charging me rent!

Watch those UTI's, they often recur. Sometimes they return in just days, other times in weeks or months. My mother developed five or six of these per year. The only symptom being changes in behavior.

I still have a personal and professional bias in favor of Neuro, but that's me. You do what your gut tells you is good. Does your MD manage his wife's care or did she see a Neurologist even in the beginning?

One of the most important issues is obtaining an accurate diagnosis. This is Neurology's gift. The primary's tend to lump everything under Alzheimer's. Neuro differentiates and that is very important.

Not all treatments are the same. In FrontoTemporal Dementia, Aricept (commonly used in Alzheimer's), is contraindicated. It worsens the symptoms and increases agitation.

With Lewy Body Dementia, anti-psychotics such as Seroquel and Risperdal cannot be used as they worsen the Lewy Body.

Your mother is fortunate to have two dedicated sons and if she were able to reason more clearly, I am sure she would have seen what a blessing she was gifted.

I wish you well and do hope all goes well with your mother, your family and you.