My gran is never happy. I think it’s because she is aware of many things she can’t do.
If we do something nice for her she will always find a reason to get upset.
She spends most of the day staring out the window and thinking about how terrible her life is. I know dementia is hard but she has a loving family who try to do the best they can for her. She always has company and any help she needs...
Happy: Hope, the longest and oldest resident there, was always a joy to see. The staff said she was a favorite patient, always upbeat and never complaining. She sat all day in her wheelchair with her head bent to her chest but as soon as she heard a voice, her head popped to the side and she had a big smile and a friendly greeting. She died last year.
Content: Noah always greeted me enthusiastically and wanted me to come into his room to see his Bible collection. When I found out his last name was the same as a cousin of someone at church, I asked if they were related. She was shocked to find out that her Uncle Noah was there, twenty minutes from her house. She said he'd been "put away" as a young adult and no one ever talked about him. I told her how sweet he was and hoped she would visit. She didn't. He died last year.
Discontent, but happy in his delusions: James always told me that he was getting out of "this place" because he didn't belong there, he wasn't like "them." And then he would tell fantastic fabrications of being an ER doc, a mountain climber, the captain on a cruise ship, etc. He actually did "get out" -- his family was still involved in his life and he was moved to another facility closer to them.
Aggressive: A lady from Puerto Rico, who only spoke Spanish, was loud and intimidating. Those who could understand her (I couldn't) said she was mad about things that were not what she culturally grew up knowing, the food especially. She was always looking for a fight, I steered clear of her. Her family turned her over to the state because they were afraid of her and needed her to be somewhere safe. She also died last year.
Dull: The lady I visit, Ruth, has moments of brightness and then just disappears so to speak, no emotion. But she'll say things like, "They say I have dementia. I don't have dementia. I would know if I had dementia." Her first words to me this week were, "Jesus loves you." (I started crying right away, I needed to hear those words after just being through another hyper-spiritual tirade from my husband about how disgusting I am to God. It never ceases to amaze me how God can speak to us, even through the a lady with dementia.) The rest of the visit she talked repeatedly about falling and how she hurts all over and her food needs to be pureed. I tried to redirect her with some of the things I know about her past (she has told some wild stories but many of them checked out true -- her parents made horror and XXX movies back in the 60s and 70s -- I actually found their IMDB pages; they had three homes, one was on Long Island and I thought I could get her to chat a bit about growing up on Long Island) but she was fixated this visit on falling and pureed food and pretty much devoid of emotion.
So, not all dementia patients have a negative disposition. I really think much of it goes back to their disposition as a child. Hope and Noah both had Mennonite upbringing. James was highly intelligent, very academic and well-read (hence the detailed stories). The Puerto Rican lady I never learned enough about to picture her childhood. Ruth had a lot of unsavory people in her life as a child, I suspect she may have been abused by some of them (even filmed), and perhaps that is why she becomes dull, maybe she had a habit of shutting down emotions as a child.
If a patient was lonely or insecure BEFORE the dementia showed up, elements of that loneliness or insecure makeup may express themselves in an unusual way AFTER the initial diagnose is made.
As I read these notes and comments, I get the feeling that most of the questions are looking for "quick fixes" or "pat answers" or (to put it more plainly: My Patient should act like your Patient did.
Not so, in many cases. Whereas we look for similiarities in the behavior of our Patient, for insight and understanding as to how to respond, there may be a different reason for that reaction from the perspective of the patient. In dementia, the "wires of their communications and expressions simply get crossed up, short-circuted, or (somehow) reverted to older memories or experiences.
Patience is the virture we need as caregivers; not "reactiveness".
Theron Few
my husband recently passed from LBD and although he had delusions
hallucinations … he had a lot of lucid
times when he was very sad and was aware of everything that he lost up to time he died.
it’s a mistake to think they don’t have that awareness….
Don’t minimize their pain … and try to cheer them up !!!
they have every right to be sad !!! !
wouldn’t you ???
I used to agree with my husband and say we have try make best of
this situation.. he’s getting best care
family close by .. etc. And then change subject …let’s get a snack …
shall I get pizza for dinner ….
whatever …
good luck
Your grandmother's focus on the negative, though, does suggest that she is feeling the sadness and despair associated with depression; and there may be ways to correct the chemical imbalance that could be causing it. Ask her doctor to consider and investigate the possibility.
Try to set aside your natural feelings of rejection so that you don't resent her seeming ingratitude. Just at this phase of her cruel disease, she can no more appreciate the warmth and love that the family surrounds her with than a blind person can see the beautiful flowers.
Your gran has a very complex set of really difficult conditions which individually can produce pain, depressive reactions, and overall limited positive responses to surroundings.
With every possible bit of due respect for you as a caregiver, you really don’t’ “…know dementia is hard…” because you (hopefully) don’t have dementia, and every dementia is different. Then couple that with Parkinson’s?
Your concept of “something nice” may just not be matching anything in HER ability to respond, or may even more simply just not occur to her as being “something nice”.
How do you know that she is “….thinking about how terrible her life is”?
SO— Is she taking some sort of mood management medication? Has her medical supervisor suggested that she might benefit from that approach? Could you contact the physician who sees her and ask for input on that possibility?
She s SO lucky to be surrounded by people who love her and want to help. Maybe it would be good for all of you if she were able to respond more positively.
Dad also, for the most part, is easy going but a bit more demanding (cut my nails, does my hair need combing, I want coffee, etc). So now that he is in the hospital setting for a bit, we are trying to get him doing more for himself. Not sure how much he was getting to do on his own in nursing home because he was far away and I only got to see 2 or 3 times a month. Dad demanding before and still after. The feisty one.
I have an uncle and his wife says sometime has attitude. For example, not going to eat this and across the floor the food goes. This seem to match his personality the entire lifespan as well. Seemed a bit mean.
But guess it depends on many factures.
I struggle with having no life as every moment he is awake is a game of avoid conflict and try to find 1 thing to enjoy, connect, or live through with him. Every thing I watch he has seen many times years ago and “you’d have to be a real moron to enjoy something as stupid as that” comments. All music is bad, all games are stupid. All activities are boring.
Your gran should thank God for all she DOES have and the family who bends over backwards to make her happy and give her company & help. Or one day, she may find herself alone b/c the family got sick and tired of putting up with her crap and quit coming around. Then she'll REALLY have something to be upset about huh?
As, I am looking back in my past. I'm finding out that she is, and hasn't been a nice person since we were younger. After my Mom told me she wanted help in her Home for the second go round. I arranged for the second Home Health to come in. My Sister was there as well. After the consultation my Mom refused services and complained about the money. When she has plenty to have this service. The next day I called to check on her. She told me she "DIdn't like me". Today was also another doozy for me. After arranging for Hospice to come in to check on Mom. Which of course, is free. The Nurse is telling Mom she needs a Caregiver at night. My Mom does her "Show Time' and is very nice to the Nurse while she is there. Then she lets me have it later.
I see that she is "Rude, Insufferable, Fake, Showboat, Selfish and Toxic". And I feel very bad about thinking this way. I shared my feelings with my Sister. I let her know that these were my feelings alone. She agrees with me wholeheartedly.
I am DPOA and MPOA. I have put so much aside to help my Mom. Even causing problems with my Marriage. But, today I am wanting to distance myself from her. And I don't know how long at this point. So, very sad and emotional.
Thank you for your post. It has helped me to know others are here going thru some of the same
Why don't you ask gran about happy memories. Ask her what is difficult for her now. It might not be happy talk,but you might learn a lot about what she feels.
My Husband was easy going prior to dementia diagnosis and after as well. He was non verbal but every time I talked to him he would smile. When I told him I was leaving to go to the store, he would turn his head and give me a kiss, when I got back he would give me a kiss. (He would kiss me if I leaned in to kiss him, he never initiated a kiss or a hug) He would hold my hand as much and as often as he could.