I have always felt that this is an important issue about how the family relates to the sick elder who has Alzheimer's. Often the family tries to deny it when they hear the news the first time. A lot of people who have never dealt with Alzheimer's before now have to face it with the loved ones. If the elder is the parent who had authority and great control over the family, then family may see that the elder is now different. Maybe it is disappointing or it is frustrating and scary. It may make the family feel angry - why, why, why?
Then the next step is how does the family takes care of the elder who is sick mentally obviously? I say mental, because although it is brain disease and it is not insanity, often the elder acts likes a crazy person given the faulty memory. Often the elder with early Alzheimer's can drive family crazy by asking to do many strange things. The worst part is when the elder lies and misleads everyone around him/her and gives the family a hard time in the community. No one can explain things right and people point the fingers to the family or the caregiver who may have done wrong unknowingly. The family also usually treats the elders like a normal person in the very beginning hoping it is just regular forgetfulness or temporary insanity. The elders would also often blame the family for not doing the things they want to. When the family caregivers and/or the appointed power of attorney try to do things to help the elders, the elders either forgot about their requests or ridicule the family caregivers for doing the things to help them.
Throughout all these ordeals, the family suffers the silent mental stress with guilt and anger. Yet the family and caregivers have to be nice to the sick elders and redirect/distract them. Well, family members are not saints.
That is why the community support is extremely important/crucial. Respite care or day care center, in home care professional workers, assisted living facility and nursing home are all very important.
One caregiver told me in her family/culture, the family is supposed to help the elders at home and no nursing home/assisted living facility at all. Well, does the family have many members? If it is a big family with lots of resources, by all means, this is what a family should do to the elders - to care for them and love them in comfort zone.
What about a small family? What about the elders who didn't want a big family due to career or personal values? What about the adult child who is far away from the elders (long distanced family caregivers.)
The family structure has changed so much in the last 20 years and things are not like what a big family is used to be anymore. Some families are still lucky that they have many people to help out. Some don't.
Finally, it is very true that the professional workers don't carry the emotional burden that the family members have carried for a long time (say, 5, 10 to 25 years...) As the result, the professional workers are certainly better sometimes to help the elders. Not that the family is not the best one to help out. The family is the closest people to help the elders but sometimes the family also has emotional distress that prevents them from caring for the elders with the best results.
Caring for a loved one with dementia is very difficult. I have alot of resources in place and this past week a nosy neighbor reported me for elder abuse. I am really feeling very upset with my situation and I cant believe that anyone would try to hurt me any more. I have home care in place as well as day center care in place. My loved one is still doing fairly well and can take care of himself somewhat. Its a shame in this society that we judge others before we ask them what is going on. I would never intentionally questions anyone's care for an individual with dementia unless I had dealt with that situation in my own life.
Hi Caregiver,
Thanks for the comment. Back in late 2005, my father-in-law had a nice nosy neighbor (they are still there although my father-in-law moved in July.) One day my father-in-law was sick with medication, and we asked them to check. She came over and forced my husband to fly over and she said if not, she would call the social worker and my relative will disappear.... Well, my husband went there the next day with expensive air ticket. He took care of his Dad and made sure he was ok and hired the home care agency to help him out. The next day when the neighbor saw my husband, she admitted she overreacted and apologized. She told him that we should get someone to check on him. Anyway, we hired the home care agency at that point and the neighbor didn't bother anymore although they were caring. Before this, my father-in-law did ask the neighbors to help out for being locked out and etc. So the neighbors were quite patient with him. Since he still sort of bothered the neighbors due to his confusion, we moved him to the assisted living home to be closer to us in Vermont. It is hard because the elder does bother the neighbors at times due to confusion. My FIL even thought the neighbors are "caregivers" and they have money for him!!
I understand your problem. Maybe it will help if you take the initiative to explain to the neighbors. Probably a controlled environment like an assisted living home can help. But it is also the elder's right to stay home.
Take care,
Nina
Yours is a sad story. Sometimes, people get carried away in trying to do what they judge as right, when they don't know enough to even have the facts. I'm so sorry you've gone through so much. It is possible, for you own sake, that an assisted living could be a good option, but only you can judge how long you can do this. You are getting help - and that's a major step. Nosey neighbors aside, if it's going well, then you can do it until he needs to move. However, a good facility may be an option before long. Good luck with this difficult situation.
Carol
I also want to add that the problem with neighbors is quite subtle but it is real. They live next doors and they are seeing this elder who is confused all the time. First of all, there is a limit as to how much they can care about, so they would call the authority if they see it fit, but they certainly don't understand the delusion that the elders may have. The elder looks perfect on the surface and they often are polite to them as well. So the natural thing is to blame the family. The elder is tricky also. In a way I was afraid of neighbors and they also suggested a nursing home. Note that these are nice neighbors.
This comes down to the issue about how the elders with dementia need to be cared for, esp. the environment. Private home is usually confusing because it has an open yard in the back and front, and if it is a large house with 2 levels, it is more confusing to the elders.
It is true that the neighbors need to ask the owner/family what is going on before they judge, but I also think it is the responsiblity of the family to make sure if the elders can stay home safe and sound. It is not an easy job.
Take care,
Nina