I wish that I had this information available to me when I was taking care of my grandmother, who had Dementia, three years ago. I tried to "bring her" into my world instead to "going to her". I didn't know to tell her that the people outside her window were going to leave soon, instead I insisted that no one was out there at all. I wish now that I would have went outside, when she thought someone was outside her window trying to hurt her, came back into the house and told her that I had talked to them and they were waiting for a ride. My dad now has Alzheimer's and I am more aware of how to handle what is going on with him. My mom and I attend a support group once a month which is great for both of us. Thanks for sharing your experiences.
Cathy, we all wish we'd done some things differently. We learn as we go. We're human, too, and sometimes react instead of giving consideration to the issue. You are so wise and humble to have learned and to now want try a new approach. If it makes you feel any better, for many years I was berated by psychiatrists for doing what I did, but then suddenly I was a genius (psychiatric methods changed).
Keep checking in with caregivers as we all have something to share. In the end. you will have to make a new decision each time there is a "crisis."
Blessings,
Carol
I really liked your article. it confirmed many things I have and go through with my dad. this last visit was about high school and when he asked me if I remembered high school I just said it was a long time ago and I have forgotten a lot. it bothered him that he didn't remember so I grabbed his high school year book and he had a nice time looking through it. What was nice was he saw himself and also my mother who graduated with him. He talked about her all the next day. (she passed 6 years ago). thank you for your thoughts and insites.
Keep a sense of humor, Jerriann
I admire your imagination, patience, and your obvious love and compassion for your father. It is obvious that you have had a very loving relationship with your father.
I do feel compelled to respond to your question "Who does it hurt?" to go along with delusions in order to keep the peace. It's a questions I struggle with. I feel that's a deeper question that we each have to answer individually. There are times when I go along with father's delusions that I feel that I am entering his paranoid world by going along with him, that I am in fact hurting my own soul by agreeing to something I know is untrue -- especially since most of his delusions involve accusations against innocent people.
Of course I am not talking about delusions such as remembering a class ring that never existed. I am talking a father who accuses his son of threatening to kill him, who accuses my husband of plotting against him. Should I go along with such delusions just to keep the peace? I cannot, no matter how upset that makes him. Who does it hurt to agree the sky is green in that case? It hurts me, deep in my soul.
You are entirely right about this. Your situation is fits with my dad's thinking there was a war in town. I also had issues with both of my parents where they thought various things such as people were trying to kill him (Dad) and stealing things (Mom). You can't "agree" with that. The only thing to do then is to quietly say that their mind is playing tricks and that this just isn't so and move on the best you can. It's very hard to distract them from these thoughts, but you can't agree with such a thing. Sometimes distraction works, but often it doesn't.
I know where you are with this as much as anyone can know what another is going through. It's dreadful and my heart goes out to you. I spent a lot of time in your shoes.
Take care of yourself the best you can
Carol
Carol,
I know what you mean. When my FIL insisted we were to kill him (he was just being hospitalized for overnight obsercaton,) he said he forgave us and all that kind of crap... The caregiver tried to convince him but could not. the nurses were laughing when they heard that he said he is being killed...
There is nothing we can change that. I believe he still has this thought that hospital can kill him and we can kill him somewhat.... Now and then he would say he is depressed and wants to go. I think he thought people can kill him like the pets.
This is worse than when he said the killer was to kill him (that killer was in another state and was killed by the police.) The caregiver just had to distract him and took him out for a walk and he forgot about it the next day.
You are right, there are some negative thoughts that we cannot agree with. But there is nothing we can do to change their faulty logic. Their are in their own world.
Take care,
Nina
Mother is 84 and very likely has mid-stage Alzheimer's (although she has not yet been diagnosed - that's another frustrating story!). She lives with my 87 yr old father, who is sharp as a tack. They have a daughter, age 61, with Down's Syndrome who was placed in a group home last August because my parents could not care for her (she is wheelchair bound and totally dependent). Mother has been unable to accept this and continually tries to bring her home. She badgers my father daily to help her bring sis home & is frequently angry with him. She has even left the house and tried to walk to the grouphome to get her. She is disrespectful to grouphome staff and is often confrontational. Although her doctor and every other professional she has talked to has told mother she cannot bring her daughter home, she continues to argue, manipulate, and bully to get sis home. The issue is further complicated because mother is sis' legal guardian - and she knows it! Sometimes when she starts on this track, she can be distracted, but most times not. This is a situation where we don't know how to agree with her and not argue. Any ideas on how to meet mother where she is on this one?
This is one of the toughest situations I've heard of. Could you say, "You've spent so many years caring for Sis, but as people age, their body can't handle transferring an adult. You want Sis safe, so it's best that she has young caregivers to do the heavy lifting, and then you can keep being her caregiver by being her advocate.
She may not like hearing this, but talking with her about Sis and Sis' needs may delay your mom in her wanting to go and get Sis. Even if that works, you'll likely have to repeat the whole process frequently. I'd lay it on thick that Sis needs her mother to take care of herself so she can stay well be her advocate. That's more important than physical care, etc.
I hope you dad is also a legal guardian for Sis. If not, some legal paperwork should be done. For that, you'd likely need a diagnosis. I know - she sounds like she won't go to the doctor for the tests.
You really have your hands full. I had to come up with some very creative solutions for my dad's needs, but your situation is even more serious. Still, distracting your mom by keeping her busy and letting her talk about Sis when she is in the mood may help.
Take care and please let us know if things calm down,
Carol
I am so sorry that your mother is wokring on the disabled sister while she has Alzheimer's. I would like to also say that sometimes the best guardian for the disabled sister may not be Mom now - it could be you or other sibling or Dad.
Mom probably was sister's best guardian but sometimes Mom has blind spot and may not understand that the group home is better for sister's social activities and well being. Bringing her home only make sister unhappy and misfit. Mom dsicriminates against the group home but it doesn't mean sister is not fine in th group home.
At this point she is still well enough to see sister so it is hard to stop Mom. Is it possible that some expert for the sister's disability can talk to Mom about what is best for sister? I doubt that Mom's home is better for sister. Group homes have the benefits for sister. I know this as my personal experience tells me that Mom never accept my handicaps but she may not understand what is best for me. She feels guilty and all that but it is not the best for sister.
The worst thing is to take off Mom's guardianship by submitting a doctor's letter saying she is incompetent due to dementia (diagnosed or not) and so the court can set Dad or you or your sibling as sister's guardian. At the same time, Mom would lose the guardian and Dad or you guys can be Mom's guardian.
That is someone else or 1 of you can be on guardian to either Mom or sister. I don't think one person should be a guardian for both Mom and sister as it will be heavy burden. You guys should share this guardianship. Like Dad for Mom and you for sister.
Hope things will improve.
Hugs,
NC
Your words have been very helpful and encouraging. Unfortunately, my sister passed away 2 weeks ago from complications following surgery to fix a dislocating jaw. Although mother still suffers from Alz, she is no longer obsessing about sis and the grouphome. In the hospital, after surgery, sis took a turn for the worse and my parents had to decide whether to keep her on life support or opt for palliative care and allow her to die in God's time. It was an excrutiating decision for them. I was very very glad to be there to help, plus the doctors, nurses, chaplain and hospice staff were so wonderful with providing information, care, and support. After a week in ICU, sis passed away. I was so proud of the way my parents, especially mother, handled it. Mom so far has only had 1 outburst of anger toward us kids about placing sis in the grouphome. She seems to be adjusting and showing signs of normal grief. She is still forgetful and very often confused, has language issues, trouble with reasoning, etc, but she is treating my father so much better and seems happier with herself even in the midst of her grief. We see these a positive signs that although still declining, mother will be easier to live with and care for.
I'm so sorry that your family has had to go through this. They allowed your sister to die naturally, painful as that was for the rest of you to witness. I can see, with AD in the picture, that this has been even harder for your mom to accept than for someone without dementia. You may see more episodes as your mother's memory declines, but the opposite of that is she may just remember your sister alive and forget the whole painful ordeal, as that was more recent. People with AD tend to go cognitively farther and father back in time.
You may then have to cope with her asking to see your sister, or why she never comes by. Since your mother knows your sister died, you may not want to continually put her through the misery of "fresh" grief. It's your decision how to handle it, but if she gets to a point where she can't remember that your sister died, I'd just say something like, "You'll see her soon, Mom. She loves you." You could follow up with a distraction of some type.
None of this is easy. I wish you the best with your situation. We are with you in spirit.
Carol
MLR,
I am so sorry that sister died. I am glad the family was able to let her go naturally. Obviously Mom will change her attitude over the whole thing. However, I think her relief is about the late sister. In general, the dementia will get worse after the trauma. I would not be surprised that she may forget more and more. She may choose to be passive about it due to depression and etc. But she won't recover from Alzheimer's. Now Dad can focus on Mom's care. Hope he can deal with her for now. Once she gets sicker, part-time home care caregiver can help or an AL may be good for her.
Please accept my condolences.
Regards,
NC
Thank you for your kind response. My dad is so practical. He is realizing that mom will continue deeper into AD. He is going to start looking for an AL facility or retirement community that perhaps they can both move into which will provide a continuum of care for mother and also for dad as he grows older and needs it. I think dad can deal so much better with mother's AD if she releases the anger that she had over placing sis in a grouphome. It appears that she has, but time will tell. We'll see how it goes. My sibs and I will be keeping in close touch with dad and mother.
Thank you for your kind response. My dad is so practical. He is realizing that mom will continue deeper into AD. He is going to start looking for an AL facility or retirement community that perhaps they can both move into which will provide a continuum of care for mother and also for dad as he grows older and needs it. I think dad can deal so much better with mother's AD if she releases the anger that she had over placing sis in a grouphome. It appears that she has, but time will tell. We'll see how it goes. My sibs and I will be keeping in close touch with dad and mother.
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I can really relate with your post, Carol. I have been best friend--and now--caregiver to an 88 year old woman. Her incessant rants that someone has stolen something else almost drove me over the edge for a while. Now, though, I listen. I help her look for the item. Often times, we find it. Sometimes, we don't. Every day is a challenge. I hope that those around me are as kind as you were to your father when--and if--I get to that stage. Keep up the good work.
Leah
Leah, it's wonderful you can help your friend and relate to how you'd want to be treated in similar situations. I hope you never get to that point, but if you do, your family will have had a good role model.
Blessings my friend,
Carol