On another thread, myrtle posted << It is not just the spouses of our demented family members who must come to grips with the effects of their illness – it is their adult children, too.>>
I would like to add that it is the parents of the demented person as well. And, I'll add to that the parents of the spouse. I believe that Carosi2* has mentioned this and honestly don't know if others have as I am writing out of a need to vent and have not searched for this topic.
In addition to the loss, misery, and grief my husband's FTD experience was made worse by his parents and mine. His parents blamed me. Apparently a gazillion doctors, tests, consultations, etc. were not enough. Then, of course, there was no cure. And to top it off, they were not a part of "the decision making process". If I had done this, that, or the other thing the glory days would have returned.
My parents mouthed some empathy. Let me correct that to "a little" empathy. Among the reasons for my husband's illness was that he did not eat meat- "didn't get enough protein" they would say, shaking their heads. But what got under their skin the most was that their sil was no longer a success. On the greens and at bridge and Rotary there was no cachet in a son in law whose brain was eroding.
Plus, my father received cancer treatment at Vanderbilt, and they were always talking about "the coach". The coach, whose name I have pushed into permanent denial was very vocal about "beating this thing". So, tsk-tsk, why wasn't my husband? (Too involved with being a vegetarian, studying Buddhism, and taking all those yoga classes I guess.)
"For ye suffer fools gladly, seeing ye yourselves are wise"
He cannot face the truth as it really is. You can. Some things cannot be beaten no matter what we believe and it does take wisdom to turn within ourselves from what we want and don't want - to what we face.
The stunningly shallow willingness I've spent my life around has often let flys in my mouth because I can't shut it from the extent of stunnedness. If not enough protein is why people get dementia how do you explain that almost everybody that gets it is a meat eater? Not the point. Not bothering is the point. I was surrounded by it too.
I wasn't blamed by in laws but I've been shunned thoroughly nevertheless.
The only thing I can say is what I say to myself. "At least I'm not that stupid." Thin gruel.
abby*6/12, You touched on a very real and very frustrating part of the Caregiving picture. Long before my Caregiving duties entailed care because of his VaD I was already Caregiving because of his Mental Illness. I attended a caregiving group for multiple issues and this aspect in particular applied to everyone and it especially applies to us. When confronted with an injury or illness at firs family and friends will rally in support, but when the diagnosis clearly becomes a permanent, or difficult, progressive condition, they pull away. To personalize this, one person becomes the designated Caregiver, by default---usually the Spouse or a single child. The rest reserve the right to "know all" and criticize, even interfere, BUT they do not really want to know. Perhaps because of subconcious fear they'll "catch" it. As you said, the Caregiver's family may demonstrate some "sympathy", but remain removed, unless asked specifically, and may express reservations about the job the Caregiver is doing; the decisions being made, or not made. The ill spouse's family may do any of the following kinds of things: blame the Caregiver, interfere with care--either by encouraging the person to not cooperate, or more actively by doing or providing things that are not to be. In our case they wanted to know all about his condition--but not from me. We gave written permission to see his Dr. and they ignored it Better to push him to NOT take "the drugs"--chemicals are bad---mediation prescribed.
I learned it was not my job to make things easier for them; educate them, allay their fears. My job was to take care of my DH, keeping him safe, and as healthy s possible. If along the way I could provide information which might help them making t available might keep them off my back/out of my hair. However, to the best of my ability, DH's contact with is family was maintained at least minimally, but I kept them at at as much distance as possible.
Some Caregivers will be fortunate not to face this hurtful, damaging part of the picture. That is a blessing if it happens.
Abby--I'm sorry you had to endure this process while people who should have been key in your lives had emotional limitations which made them incapable of support.
Abby*, your journey with your husband was devastating enough with out the added complication and distraction of having to deal with interfering in-laws and relatives. I wonder why it is that people who supposedly "love" us make the already difficult job of caregiving even harder?
I too am sorry you and others like Carosi2 had to endure this journey with such insensitive people. Those of us still caregiving for our spouses should heed Carosi2's words of wisdom "I learned it was not my job to make things easier for them; educate them, allay their fears. My job was taking care of my DH, keeping him safe, and as healthy as possible."
I was angry at my husband's family for abandoning us, but at least this way I don't have anyone interfering with my decisions about his care.
I have to echo LFL's last sentence. My husbands's family also abandoned him, which was sad, but at least they did not stir the pot. I never had anybody second-guessing me in terms of DH's care.
LFL, You are so right. abby* and Carosi2* describe an intolerable situation. One thing I have going for me is that I don’t have anyone to second-guess me or interfere with my job of care giving. I have no children and my husband’s children are 2,500 miles away and not interested. If my own siblings, who are local, have any criticism of the job I am doing, they keep it to themselves. This does not mean that I do not ask for advice. I have sought a lot of advice from a friend who took care of his father for 10 years and I’ve also enlisted the help of a geriatric care manager.
If friends and family were to ask me how to help someone in our situation, I would say, “Listen a lot, make sure the care giver knows what you are willing to do to help, but offer no advice unless you are asked for it.
When I tried at first diagnosis to tell dh's brother and wife by phone - they are 700 miles away - that he had vascular dementia the subject was changed immediately. Another phone call later telling them or trying that he was slipping away from reality - same response. They had a sister who died with Alz and another with VaD and their mother had mental problems although it was never mentioned so my thought was they just couldn't accept that they were loosing yet another sibling. I always thought there was fear that brother might be next.They offered neither advise nor sympathy but just went on as if all was normal at my house. Brother is now 87 and seems to not have any mental problems which I'm happy for them, of course.