I invite you to log onto the home page- www.thealzheimerspouse.com - and read the weekend blog. It is a commentary on an article (which is embedded in the blog) about caregiver characteristics, which got my hackles up a bit. Please post your comments and opinions here. Thank you.
Agree wholeheartedly, especially the compassion for the family members who do not help; indeed, who even cause problems. I've said it before: my husbands ex-wife, his children and their partners and even his 20-odd-years old grandson seem more interested in what they can get, not in what they can give (they are still taking things from his room at the care facility that I've put there for his enjoyment). If I have any compassion left over, I'm directing my way.
Why is self-caring seen by outsiders as selfishness? Even if I were able to follow his ideas to the letter, that saintlike approach would eventually probably have me sicker than the patient. Nowhere did he mention Take Care of Yourself.
What if you don't have what it takes? You still have no choice. It is difficult to be compassionate to distant family while you are losing your lifepartner, your financial stability and all of your dreams for a life together-riding off into the sunset.
There's nothing wrong with any of the attributes he recommends for caregivers. All are good, all are required. Mr. LeBlanc may have oversimplified his case though, in the sense that COMPASSION for or UNDERSTANDING of the reasons why a relative may not be helpful are not necessarily going to cancel out our FRUSTRATION or ANGER in those cases. Emotions are a many-leveled strata of often seemingly incompatible and intertwined flavors.
I am going to guess that Mr. LeBlanc is someone who would make more sense in person than in writing. Again, the problem is oversimplification. He attempts, appropriately, to allow for the fact that not everyone will be successful at tapping the deep well of strength needed to carry on in the game, and he gives them an out. But the structure of his thesis makes it appear that he's making the following point: Failure to be able to carry on singlehandedly means that you are missing one of the requirements: Commitment, Compassion, Endurance, Unselfishness, and Honesty. Here is why that is a problem: None of those virtues (except possibly Honesty,) are switches that are either off or on. Things you either have or you don't. They are qualities--stronger in some than others--but all are RESOURCES, not elements of binary code, 1 or O, present or absent. Like maple syrup in the jug, if no one ever shows up to help you do the shopping, you are going to run out, no matter how diligently you hold the jug upside down and watch it drip.
So, it may seem that he is suggesting that IF YOUR RESOURCES RUN DRY, it means you are either not committed, not compassionate, lacking in endurance, selfish, or dishonest. But we know the real problem is that sometimes our journey takes us through the Sahara Desert, no oasis in view. If we find ourselves lacking a trait, it isn't one of LeBlanc's listed 5--it's super powers. Sadly, we are not super-human. Well, I'm not. ; )
This makes for a good discussion. I too picked up on his omission of "taking care of ourselves". I don't believe that falls under selfishness, just as taking respite time; buying things we like at the store too--not just LOs preferences don't. We cannot lose ourselves in the Caregiving process.
As for compassion. I definitely feel badly for DH's family , in denial, not helping, and even interfering on occasion. However, my JOB is DH's care. I make information available. I keep them informed of important changes. But the phone rings on both ends. Decisions I make in consultation with the professionals involved in his care, will be respected, and i will not explain and justify each nuance of decisions. My focus cannot be on them.
Beyond these pieces of being a Caregiver, I got a sense from the article that the "Good Cargiver" has a full commitment to the job;is filled with compassion, has unlimited endurance; is totally unselfish, and completely honest. If we aren't all of that --we fail? I don't think so. If we aren't all that, we get help in; we may have to place our LO and advocate for them in that venue; we use whatever medical, legal, spiritual, etc. means possible to support our efforts; and ...if any of that comes up short, we recognize that we are human and we've done our best----and that is GOOD ENOUGH.
Gosh where to start..Ok he took care of his father. My brother in TX was closer to my parents, geographically because he lives in the same town they did, I live in CA and I did as much as I could from here when I was not in TX too. I made calls, spoke to the caregivers at the house etc and hospital staff at times as well. I did not follow the author's history while he was taking care of his father but I would bet he did not do it alone.. not 100% of the time. While he lists characteristics we would all hope to live up to, his article seems VERY POLLYANNISH to me. My step-kids, who are great kids, KNOW their dad has AD but they do not SEE the changes and can't grasp it either when they talk to him on the phone as he sounds so good. They have been told to write and call him often ( one day he won't be able to converse at all and make sense) but do they? They may call once or twice a month.. I called my mom every week, sometimes a couple times. ( one time she hung up the phone by putting the hand held under the cushion so the phone never hung up. I had to call my brother at his office to tell him to call his house and have one of the kids go hang it up :^} this was before cell phones were common sort of an alrighty then).. When friends announce they are not coming by anymore...what are we to think? These people know the situation but don't care enough and for my $$ are not real friends..and yet even real friends have lives and are too busy and then they give you that sympathetic look and say " we will have to go to lunch one day". Nope I would not be on this author's honor roll. I love my DH and don't want harm to come to him. I do worry about his kids or others accusing me of abuse..like maybe his doctors...who say YOU HAVE TO MAKE HIM TAKE HIS GLUCOSE 4 TIMES A DAY. OR YOU NEED TO MAKE HIM BRUSH HIS TEETH A CERTAIN WAY.. I once told one of the doctors YOU COME TO MY HOUSE FOR 2 WEEKS AND YOU DEAL WITH THIS DAY IN AND DAY OUT..YOU DON'T GET IT...YOU HAVE TO PICK THE HILL YOU WANNA DIE ON AND IF HE MISSES A FINGER STICK THAT AIN'T THE HILL!" And what is it with the finances? As a spouse we do watch out for the finances...we have to...we have the house hold bills need paying, the drugs, the doctors, the gas for the car, the tune up for the car, the yard guy, the window washer guy, the bug killer guy, some of those things that help us keep the house in shape for our LO and then there is us..we who do the laundry, cleaning, ironing, errands and draw not one red cent, are up all hours, worry non stop.. What we go from wife/husband to merely the caregiver who is NOT on a salary? We are partners in this whole drama.The more I go on the madder I get at that author's holier than thou recommendations without recognizing the very human toll taken on full time caregivers and then tries to sooth by saying "don't feel guilty if you don't measure up". Nope, my money is that the author had help, he had time away. I will take my suggestions and encouragement from those on the site here who have walked the spouse walk of caregiving. Having lost my mom and an uncle to this disease, and having been a long distance caregiver who made the trips, put in the time and now have a DH who has this disease I can testify that the manner of caregiving and the stresses are not the same they are far far greater. That is my story and I'm sticking to it.
I think this article is a "Be all, do all" situation. It would be commendable to be all things to all people in all situations, but I don't think it is possible realistically. I think all the points are valid but not attainable and I seriously doubt if the author achieved all those expectaions. Hindsight is easier than foresight and I think he is wrong about how much we "HAVE" to give in order to be a good caregiver.
First of all, I agree with those of you who mentioned caring for a spouse is different - he was caring for his father. There is a WORLD of difference in the pressure between a spouse and parent with dementia. I cared for my Mother her last 15 years, in our home. She did not have dementia, thankfully, but still it curtailed my travelling, home life, hobbies, etc. and I cared for my husband the 8 years through Alz/VD and Parkenism. Both at the same time for several years. In both cases Hospice was on board - 6 months for my Mom and 10 days for my husband. After my husband's death, 7 months ago I have had to jump/start my life as a single woman. Reaffirm old friendships and forge onward with making new ones.
I am making great strides and enjoying my "new life" immensely. I urge you to DO NOT let the disease claim 2 victims. It can easily do so. Keep your sight on having a new life after you pass through this "bump in the road". It is really more than a "bump in the road" but it is does not have to claim your life too. As a friend once said - "One foot in front of the other, and keep walking forward".
My take is that the article is a wonderful job description for perfection. I personally don't know anyone who can meet those expectations perfectly. I know I can't. But I do know many wonderful spouses giving all they have to give on a daily basis to help their loved ones deal with everything. They provide daily care with love and compassion. Each one is committed to doing whatever he or she feels able to do in a spirit of both honesty and unselfishness. I don't see how anyone can do more than this. Perfection? Nope. The utmost of love and endurance to the degree that each one of us has to give. Yes.
I just wonder if this is this guy's whole story.. if the next para might have said/should have said: so this is unattainable. We can't do it.. so don't feel guilty if you have to put them in a facility. I don't feel he's describing HIMSELF here, just an ideal.
As for compassion for family members, what if in his mind he's thinking of his mother who would like to but can't take care of his father, rather than estranged step-children who butt in.
The main problem with the article is that it takes it for granted that it is OK if the caregiver dies first. In fact, I think that if you've managed to do enough for yourself to survive the disease, that is what he calls failure. Because if you handle those five characteristics the way he suggests, there is no way you are alive during stage 7 of the disease.
He did say that there is no shame in admitting you need help. "There's no shame in admitting defeat or the need for help. This ordeal is unequal to any other and if you find that you're suddenly unable to carry out this crusade, please don't go through the rest of your life inflamed with guilt. This is definitely not what your loved one would have wished upon you."
HOWEVER, as I said in the blog - "Mr. LeBlanc states right at the beginning that not everyone will be successful at caregiving. He states there should be no shame or guilt if you do not have what it takes. So what happens to the PWD (person with dementia) when the caregiver is unsuccessful?? If they are not ready for a facility, what do you do? If there are no relatives willing to step up, what do you do? If there are no finances to hire someone to handle the job in your home, what do you do? You do the job, poorly, and probably end up in the courts for neglect."
That is the main question and issue I have with the article - So if you don't have those perfect qualities to be a caregiver, what do you do? Especially without finances. What do you do?
Starling - I love her statement - "Because if you handle those five characteristics the way he suggests, there is no way you are alive during stage 7 of the disease."
I shared this with someone else, and they said, "It looks like he wants to pat himself on the back", or show everyone what a wonderful, perfect person he must be because he was able to do this. I agree with that assessment.
Just like the best mothers seem to be the ones who agonize the most over their parenting choices, while the bad or mediocre ones seem to be quite satisfied with their performance, anyone who thinks they did such a "perfect" job of caregiving makes me a little suspicious. I think there are many wonderful caregivers who come to post on this site, and I don't think any of them ever claimed to be so perfect. So who is he trying to convince--other people, or himself?
My main argument is with the Compassion section. He seems to attribute lack of help by relatives to denial alone. I disagree, some people are just self-centered and unable to empathize with others--that's different from denial. Also, if it is denial, wouldn't there be a time limit? I could understand denial at the time of dx and shortly afterwards, but when year after year goes by, the patient gets progressively worse, how long can someone use the denial excuse to justify not being actively helpful?
I agree with the comments here. Mr LeBlanc hasn't even done the simple work of researching the different relationships and has blindly applied his own experience to everybody else. It's commendable to try and advise people; but, this article it seems to me is aimed at people who have absolutely no idea what they are facing and then just gives them five platitudes.
First of all the patient has not placed all their trust in you. There is no such conscious decision. Secondly the only place Mr LeBlanc does not address the caregiver as though they are a utility rag like a Sham-Wow is in saying the caregiver doesn't even have time to be 'selfish'. The caregiver is no longer a person in his view.
Mr LeBlanc is not only speaking from a very high pulpit in the tone he has taken, he has not bothered to earn the right from the readers to show that the implication that he did all these things himself is in any way justified. When you preach and you want to be listened to you with respect you must show that you have been ordained in some way.
The reason this article misses the mark for this audience is that an apparent championship winner in the minor leagues is lecturing the pros.
As Joan points out in her article and the very reason she created this site, the caring of parents and the caring of spouses is not in the same league. And I have personal experience that she and everyone on this site is right. There is a world of difference.
The rubber hits the road when you consider that it's one thing for us to list the five things our children must do to reach perfection in school and it's quite another to live through the 1,000 moments helping them. This analogy too misses the mark because the degree of difficulty isn't in the same ball park. The best analogy I can come up with is writing an article about how to drive your car to it's very limits all the time and completely missing that the only way you can do that is by actually maintaining the car itself.
I'll go further. Mr LeBlance does not sound like someone who lived what he preaches. Anyone who accomplished that list as a life experience would almost certainly have a different tone. The humble tone of a person who went through the fire and has come out the other side. Their words of advice would have that sound like Oak when you rap on it with your knuckles.
WOW! I have to say that I agree with all of you and am proud to stand among all of you caregivers who "have what it takes"! Yes Mr. LeBlanc did omit the important aspect of caregiving that requires us to take care of ourselves along with our spouses. And yes, we do TRY to exhibit these characterstics all the time but ...ALL THE TIME? Truthfully, it sounded like he was writing a manual on How to Win Friends and Influence People. I think he also ommitted the human element too. And that is precisely why I turn to my friends on this site--because you all help me realize that spousal caregiving is not easy, it's not cut and dry; and it changes on a minute-to-minute basis as do the qualities that are required in order to "have what it takes".
I am not sure what Mr. Blanc is defining as “success.” Is he saying that if you seek help, or eventually place your LO in a skilled care environment, that you have not been successful? I would define success as maintaining your spirit throughout this ordeal and not letting Alzheimer's take two victims.
I believe there are additional qualities that are at least equally important as those he listed. Maybe instead of 5 – he should have had a “top ten.” I would definitely include: #1 Patience. #2 The ability to compartmentalize your emotions. I don’t know if there is a single word for this – maybe objectivity? When you are watching a spouse lose more and more each day, but you know the decline is going to continue for years, you have to throw up a wall to the pain and sorrow that you naturally feel. You must detach yourself or you would drown in the sorrow. #3 Wisdom – to know when to take a break (I often worry about people posting here, that their situation is slowly burying them alive). We know that if we go down, we’re going to be of no help to our LO. #4 Adaptability – being able to adjust to each new loss, each new responsibility, each new phase with confidence that you can do it. #5 Faith – knowing that you are not in this alone, that God will never leave you or forsake you - that you can cast your burdens on Him, and that He cares for you.
Wolf, You have made an excellent analysis of this article. I would disagree with you on only one point and that is the one about the trust..I think our loved ones did put their trust in us knowing that we would do the best we can for them. Later they will not understand that of course but I do think at the outset, they do put their faith and trust in us.
The rest of your article was very well said. Bravo.
Glad to see you here on this board, Wolf. I knew you would have a lot to contribute in your very eloquent and thoughtful manner. I don't post very often but I do lurk fairly regularly. At the moment I have absolutely zero compassion for my husband's brother, his only surviving brother who can't be bothered to come except when my husband is in hospital. I don't need him then- I need him to relieve me once in a while of the day to day heavy care that my husband needs right now. I don't know whether he is denial or what but I do know that I get a lot of criticism about what the doctors are or are not doing. I don't think of my self as a caregiver who knows what it takes rather as one who made a commitment to love for better or worse, in sickness and in health and that's what I try to do.
Mary22033--I agree with your additional qualities, especially #2 The ability to compartmentalize your emotions. This "wall" we set up is one of the most effective ways of coping that I have found. Otherwise I fear I would "crumple" several times a day. I also agree with Inge's last statement, too.
Just thought of something--maybe I should read the article again, but is there anywhere mentioned that the caregiver must also possess one more important quality, and that is a sense of humor! It helps us all get through some very trying times, right?
Mr. LeBlanc's view seems to be somewhat skewed from reality. Maybe his father was very easy to care for in many ways remaining mild mannered and docil. That certainly does not describe many of the spouse that are talked about on this website. I can understand needing compassion for those that are in denial and do not understand - but after many of the hurtful comments that I received, compassion for them is highly overrated. They were not around helping when I was going on 2-4 hours interrupted sleep each night. Nor were they there comforting him when he had some very strange hallucinations or was frightened by so many things.
If I was perfect, my name would be God. Well, I am not perfect, my name is not God and all I can do is the best I can at any given time. What he describes is utopia and does not seem like reality at all.
It is a fact in any caregiving situation - if the caregiver does not care for themselves, they will not be able to give the needed care.