I would have said NO to this question several years ago, but I now think that my whole life has been preparing me for these years of being a 24/7 caregiver to my 73 yr, stage #6/7 wife. Certainly the meetings and support group meetings I have attended the last 3 years have been immensely helpful. But I don’t like to think about my ability to be a caregiver in stage #7 But I think my college degrees in Engineering have also been helpful. It has made it easier to somewhat understand the complications of Alzheimer’s Syndrome (disease). Rather than go into technical engineering as a career, I choose to go in the direction of a sales engineer. When you are selling a technical product you have to look at the benefits of the product you are selling, marketing, advertising, and connection to the actual design of the product. All selling of a technical product is beneficial communication of the product. Communication with my LO is just as hard as communicating the value of my products. Carol does not understand that a bath is important to her wellbeing. I think my training has made it easier for me to prepare her tub water, with the right amount of bubble bath, at especially the right temperature and have wash cloths and soap that appeal to her. It helps to sometime use a “demonstration” to show her how to actually rub and wash her body. (Private areas are still a bit of a problem!)
Taking pills need to be interesting, with a good presentation method. Swallowing is sometimes a problem and patience is needed. Brushing teeth has worked much better now that we used a brush that vibrates and has a neat button to punch with your thumb. Dressing and clothes selection also needs to be handled in an interesting way. An advertisement must have a picture (clothes laid out in nice arrangement on the bed with spread pulled up.) Color is very important to show off the product. You need headlines in the ad to show main clothing. The ad needs copy and that is me helping her take off pajamas and putting on her daily clothes, piece by piece. That is called an advertisement or commercial or a “Sales Presentation”
I have also been actively involved in my Christian life and have done a lot of teaching to children and teens. Explaining the Bible and make it interesting for developing (deterioting) minds. You also need to believe that Christianity is a very useful and beneficial part of our life. It is where we get our salvation and eternal life. It is a real comfort. God is the only One who can really help ME in getting through this trial.
I have been married for 49 years and that training has also been very educational, especially since I have had a good marriage with 2 great children that we raised together. Certainly that family situation is really basic to caring for your LO at your home. I do have a lady that comes in 3 days/wk for several hours. Caring for family members is great training for AD caregiving.
Another training was my involvement in housework and especially cooking. I did not marry until I was 25, so I had to learn how to cook, and my mother was a great cook who always had me helping her in the kitchen. She always made it fun and my love of food was the result of all this good New England, Georgia, Texas, Mexican, and German food. It is still my big sin. But I can handle the kitchen without too much confusion.
Sorry this is long but it takes a lot of training to be a good caregiver, and if I do say so myself, I do a fairly good job. Not perfect but at least I keep my LO happy some of the time. We still have the anger outbursts and I just keep working on my patience.
May I compliment you on this thread? You have nailed it. We all come at this from different perspectives, but all of them are forms of on the job training. Applying our knowledge and skills in new ways to address a new job. And, we're smart enough to search out a place like this to share what we know and glean from others what we will need to know in the future.
bille, that's very interesting. Makes us think about our blessings instead of dwelling on our problems. Your wife is very fortunate to have you as her caregiver.
Bille, I have a somewhat different perspective on this subject. I have a college degree and for 32 years I worked for the Federal government, and little of my educational/work background does come in handy. For a while I was a management analyst and a budget analyst. This job experience helped me when I had to take over the finances from my CPA husband and to evaluate options while making dozens of important decisions about the changes in our lives. However, those were the "easy" parts of this new life I'm living.
Mostly what you described above was assisting your wife with the ADL's, and it sounds like you're doing a good job. But again, to me that is not the most challenging part of this ordeal. Neither is the memory loss.
Nothing in my education, work, personal, family or spiritual life really prepared me for dealing with the psychological issues Alzheimer's disease. Especially the personality changes and aggression. Although I have never felt in danger, my husband's AD Dad was very physically aggressive, and that's not something I've forgotten. My husband is much bigger and stronger than me, and again, it's not an issue now but I am aware of it. My husband's losses are huge, and the dynamics of our relationship have been reversed. He always saw himself as my protector, the main breadwinner, loved his job, loved driving and cars, playing golf, etc. So no wonder the poor guy gets upset--the rug has been pulled out from under him. These issues have already been discussed at length on this website. By the way, we have always had a dream marriage--same values, interests, chemistry, level of devotion, etc. No conflict, stress or tension. Until AD, that is.
So my point is, I believe that training for dementia caregivers is desperately needed--mainly to handle the psychological issues. We shouldn't have to use trial and error, get advice from books, etc. Early on, I made mistakes in how I handled my husband, which could have been avoided if I'd been trained. Now I know how to handle him and life is much more peaceful.
Welcome to my website. I am on my way out to the gym, so I promise you my more extensive welcome when I return.
marilyninMD,
YES, YES, YES, YES, A million times YES. You have hit the nail on the head. It is the psychological and emotional issues that no one expects. I have done radio shows on it, and have written blogs on it. No one expects the personality changes, the irrationality, the rages. All one expects is memory loss. The speaking presentations I have ready are currently on communication, but I have one in the works on the psychological component. Actually, I wrote a blog on the earliest symptoms of AD causing divorce because no one realized what was happening. Copy and paste this link for that blog. http://www.thealzheimerspouse.com/ADdivorce.htm
I have been an RN for 50 years-home health care for almost 30 years. Nothing prepared me for the total loss of my life mate. Nothing prepared me for the monster that took over his body. Nothing prepared me for the loss of our dreams. Nothing prepared me for the daily rages. I have no tricks of the trade to make this journey any easier. The physical aspects of the disease can be identified and coped with. The emotional aspects-well-----
It occurred to me after I finished my comments above, perhaps male caregivers don't face psychological issues in their LO's that are as intense as the ones we females see? Perhaps the traditional male societal roles set them up for a steeper fall (psychologically) when dementia kicks in? Traditional female chores such as helping with cooking, laundry, gardening, etc., can be continued to some degree well into the disease. But being the main breadwinner, driver, handling finances, (the traditional males roles) disappear pretty fast when cognitive impairment is present. Those were the things that set my husband off--and he certainly had justification to be miserable, because he realized the losses and thought that I and others were telling him he just couldn't do anything right. I wonder if there have been any studies on this?
the bad thing is what works for one AD victim will not function for another. the colors you speak of Bill sound wonderful but alot of AD people like mine have 'anogonosia" sunshyne explained this so well! and he wont come near anything dark or with colors. he steps over anything on the floor dark. your theory is correct for the real worlds outlook, but unfortunately AD usually robs the person of their perspective on what is normal at some point. i love your outlook, positive thoughts will get you thru -Divvi
marilyninMD, I'm sure you're right about male caregivers having it easier as far as having to deal with their LOs psychological issues. Frances didn't seem to find it hard at all to give up housekeeping, cooking, banking, etc. I guess her "psychological issues", if any, would relate mostly to loss of independence in personal matters like toileting, bathing, etc.
Good to hear all your comments. I am probably a new poster on this board since I started on the Alzheimer's Message board in 2005. My wife has had symptoms back to 1998 so I have been around AD for a long time. Always the only caregiver. The emotional pains for us is of course the hardest part. It is so sad to see them loose their memories of family and experiences. I do think this is where my Faith in God has really been the most helpful. The sermon on the mountain was written for us caregivers. I'm not sure it is harder for Men than Woman but am probably prejudice. I might can handle the physical side easier than woman but the family side and raising kids as a mother is probably more beneficial to a CG. I really think it must be really tough on those who do not have a strong belief in God, the Bible and of course the Christian beliefs. We can not trust in our own capabilities. We can get help from other people but the relationship is between the LO, the CG and I think the biggest helper is our Faith and trust in God
What kind of training have you had? My LO had a father with AD that also a major trainer. What can you share?
Bille, welcome! My training was in raising four children! I now have a 5'11" two year old and my memories are returning in how to handle two year olds! <grin> I also cared for my mother when cancer reared its ugly head until she passed away. I don't count the two months that I did 8 hour shifts by my father's bedside in the hospital while he was dying from cancer because that did not include anything but sitting with him and talking to him when he was awake and "with us".
You are right that our Faith and trust in God are what are helping me the most.
My fear now is that one of my single daughters will get AD.
Bille-- Training I've had? Maybe being oldest of 7 and all the shared responsiblities you learn growing up, because your parents want you to be able to be an independent person when you're adult. Maybe also, having had to learn to think "outside the box" all the time, because my own disability has demanded that. I've always had to look at the end result and then had to figure out how I'm going to get there--not always the "NORMAL" way.
I have a Masters in Library Science. Librarians do not know everything, but we have extensive training in "how to find out." It may have been an unforseen blessing that I specialized in Children and Young Adult Services rather than being a Medical Librarian. My specialty taught me even more about approaching things from multiple angles. Kids learn in many ways, and you have to find "what works" for each.
Maybe the years helping DH when it was only his Learning Disabilities; or maybe the years when the Mental Illness came to the table helped train me.
Raising our daughter.
What ever contributed to my ability to deal with this now, what I find the most unusual for us is that I don't get angry at him or his behaviors--frustrated sometimes, but not angry. What sets me off are the snags in other parts of the picture--screwups with a change in our Mortgage Servicer; the checkbook doesn't balance (I know that's me); faulty performance by a service provider; the phone company that sends a new statement saying the bill just coming due, is past due., because their computer is set to print the new bill before our due date. Those get me. Grrrr.
This site is my best tool for learning what may come and approaches for dealing. Knowing there are others who do know where I'm coming from and have a good clue where I'm headed, and who care enough to share the walk is the best support for this journey.
I have no training whatsoever. I was number 7 of 8 children. I have never had children so I have no idea how to treat a 5ft.11" 2 year old. Which is why I need something to help me through the rough spots. Jean
Once again - a reminder - This website does not get into religious discussions. Whatever religious beliefs get you through this journey are personal. We have people of every religious faith on this site, and we have non-believers. All are accepted and offered the same helping hand, but I keep to the policy of religious beliefs being personal and not discussed here.
OOPS! Sorry I offended someone. I had no intention of preachng. I sincerely wanted to explain how I do feel that my life was full of things that seem to habe been preparing me for this dreadful disease. I wish I had more training but I guess we have to settle for on the job training. but this message board has to be at the top of my list. I wish more husbands would chime in but you ladies are great and I appreciate each of you. Especially Blluedaze. I am sorry.
Can a guy give hugs. If so HUGS to all of you stalwarts. Hang in there. Bill
I'm not sure my past activities really prepared me for this journey. As a physician I took care of patients with AD, but I now realize that I didn't pay enough attention to the caregiver's needs. Knowing in detail what to expect is both a blessing and a curse. Often my wife will ask me what is wrong with her. My response is that I know, but wish I didn't. Taking over the cooking was really hard for me, since she had done all the cooking. That's one reason we are now living in a retirement Inn where the main meal of the day is provided. I really feel fortunate in that she has not had a major personality change. She is still the same, sweet, caring wife I married. She just can't do things for herself or remember anything (prior to AD she had a photographic memory).
For me, I wish I had stronger religious faith. My wife and I have been regular church-goers all our married life, but her faith is much stronger than mine.
We have a guy whose screen name is dking, here on the boards who gave what I think is the absolute best explanation of being prepared for Alzheimer's Disease:
"Vietnam was good training for this caregiving role. If something bad is not actively happening, something bad just happened or something bad is getting ready to happen. The trick seems to be, in both circumstances, keep everybody alive and get into the next day. Try and find some joy in between the bad stuff."
What a wonderful thread this is!!! I never thought of our previous training preparing us for being an AD caregiver. But, it is true! I am the mother of 5 children within 6 years. One set of twins--one with special needs. When they were of school age, I went to work part time for an agency. When they were out of school, I went to college and then took a wonderful job as an administrative assistant for a small regional airline. I had all the autonomy I could handle! I now find that I am using all of those organizational and planning skills every day.
The biggest hang up that I'm having now is that we no longer drive. I am so used to being able to hop in my car and run to the store any time I want that I forget how much planning I need to do for a weekly shopping trip. Dang! That is sooooo hard for me to do. But, I will get it all figured out and I will prevail.
Already have the bus schedules figured out and things are looking good. DH can't be left alone any more so we go out on nice days on the bus. He seems to enjoy that. And, he seems to like being alone with me rather than having someone drive us.
Training is an interesting word to use. I think I would call it a combination of training and life experiences. I am in IT and tend to think in terms of looking for solutions to problems and analyzing what his requirements are. Those skills have helped me a great deal.
Life experience - no children, a sibling who is several years younger than me that I helped raise. However, one of the things that have really helped was the blind woman that I worked for when in high school. She had a very real paranoia of someone throwing things at her. Looking back and knowing what I know now, she probably had the beginnings of some kind of dementia. She was often very difficult to deal with. However, I learned a lot from her and today I am very grateful for the experience.
My failing is that I do not make snap decisions well, I really need to think things through. I get around this by thinking ahead and trying to be prepared, every now and then though something comes along that really surprises me.
JOANG--- I agree about the soldier. I had never thought about the training for war coulb be such a good preperation for handling AD. Another thing is the repetitive aspect of a soldiers training. They play games to help the soldier follow instructions or important procedures because in the middle of an encounter the soldier does not always have time to reason out the right solution. He needs to act on the training he has had.
It also reminded me of repair specialist. They are taught to associate "cause and effect". that is similar to the caregiver needing to respond or react based on some training we've had versus just a quick, emotional response to the anger attacks we encounter.
I started this thread with my thoughts on the training I had vor this job. But the real truth is that nothng is really training us for this huge job we are faced with. I have been long convinced that the medical profession does not really understand the true life of the caregiver. They look at the patients as a great opportunity for running a lot of tests and talking about all the posibilities of TIA's, Mini-strokes, enfarcts, dimentia, etc. etc. I know that the Alz. Assoc in Dallas has a program that tries to communicate with the medical profession on some of these matters but it does not really solve the problem. People just do not understand Alzheimer's and they need training as much as we do. Marilynmd has taken the Walk and Talk to audiences with her writings and talks. Joan tries to reach as many people as possible along with, of course, the caregivers.
My training was good but oh so inadaquate to really go through this horrible situation.
Thanks for all the remarks. Bill (the new Poop King)
bille, you are right about the medical profession not understanding the life of the caregiver. When I was in practice I never asked the caregiver how he/she was doing. Since I have become a caregiver I have given talks to the medical staff of 2 hospitals on "Alzheimer's Disease from the Caregivers' Point of View". It was very well received.
I must disagree with your statement that the doctors "look at the patients as a great opportunity for running a lot of tests and talking about all the posibilities of TIA's, Mini-strokes, enfarcts, dimentia, etc. etc." The main reason we order tests is to rule out other possible causes of dementia. Some of these causes are treatable, so it would be really sad, not to mention malpractice, to miss one of these. Once the diagnosis is established the only need for further tests would be to follow the progress for research purposes. My wife has not had any test since the diagnosis was made. Progress is determined by my reports of her activities.
My DH has had no further tests either since the dx was made. I fax the our GP a log of his activities, my concerns, ect., just prior to each 3-4 month appointment and we take it from there. He has been on a long plateau - and that is good. In fact, we had an appt. this morning - all labs great, he couldn't tell the doctor what he had for breakfast except "cereal" but didn't know what kind. After I said raisin bran, about 10 min. later doctor asked him what kind of cereal he had and he said raisin bran! No more formal testing as far as I am concerned.
As a nurse I would say the medical community doesn't understand the "FULL SCALE" of caregiving as we (in the work place) do it on a "shift basis," for pay, and not for family. The personal and the emotional component isn't involved. And there is alot of relief in the aspect that there is an awful lot of ancillary help in hospital, or resources for referral. Also, we go home to families, or our own personal time, and refresh with distractions we enjoy. In my career I took care of AD patients. I took care of my AD Dad in home (helping my Mom), and now he's in a facility.....so I advocate for him. It is "somebody elses life, somebody elses relationship, somebody elses problem, somebody elses emotions." We're not focused on that one AD person or family. After all, they aren't OUR family member. And we have alot of other patients to care for. We cannot afford emotional involvement with patients or their families....or else we'd lose it every day and be no good to anybody.
NOTHING, absolutely NOTHING in my background prepared me to be caregiver for my spouse. The ancillaries, and the breaks, and the personal time, and the normal family home life, and the soulmate/partner/friend are not "at home" for us to go to after a shift to recharge ourselves. So NO! Medical people do not understand caregiving for dementia patients the same way we spouses do.
Marsh----I respect the med. prof beyond any other profession. My point was that they do not keep their eyes open when it comes to AD. They ask very few real good questions that would help them establish that AD is a very probable diagnosis. For some reason, they seem to hesitate to discuss this possibility with the patient and the spouse. Carol, my DW, never heard the probability until she was too far to understand. Even the specialist seem to rule out every possibility and fail to discuss this very likely possibility. I started suspecting this possibility but was aided by the fact that her father died of AD several years ago. His Dr. Diag. fairly early and no tests were run. Maybe he had no troubling symptoms to suggest the tests. But my whole point is that they need more and better training on the disease and the real plight of the Caregiver. Glad to hear you were a DR. I knew I liked your posts. Bill
Better understanding of the caregiver's role will improve - it has to with the outlook of AD diagnosis for the future. Medicine has to change with the times. Just like medical doctors are learning about alternative therapy like herbs and supplements vs drugs, so caregiver's role importance and how valuable they are to the doctor to understanding the patient will come. At least it should.
Charlotte-- My DH and I are so lucky, because both his PCP and his Psych/neuro Dr. know th value of the caregiver. The Psych/neuro Dr. told me at his first appointment, that the most valuable tool in his treatment box is the patient's caregiver. "You are seeing and dealing with him 24/7 and know what's normal and what's questionable for him. I can't get that in an office visit." This is his new Dr. not the first one he had after the hospitalization.
My training came from this wonderful book I just bought Caregiving for Dummies
couldn't wait to get home and read it......but all the pages were blank
I also get lots of training from CNN news.. The stock market crashing, the twin towers falling, Hurricane Katrina with New Orleans, the floods in ND, tornadoes, hurricanes, tsunamis, earthquakes, ice storms, drought, etc etc....that is exactly what is happening in my home...
I think I will use some of the ideas in this thread in the blurb I am trying to write for Joan's book. Of course I will include some of my spiritual feelings as preperation for my current 24/7 job.
If you care to give me any updates you might have on our training to be better Caregivers, I would appreciate you comments. Bill Eldridge