My mother does not even care to talk with the staff. She had no interest in walks, music, manicures or going outside. She was getting to where she did not want to go anywhere months before she went into the home. She only watches the same movie over and over. But now it's worse. I tried everything I know. It is making me more guilty and more frustrated every time I try to get her to do anything, The carnival at the home was a washout.
I try to be grateful she watches her movie and is not in pain. But still.
Thanks for saying that and I do agree with everything you said.
Hang in there!
Your reply regarding your mom sitting In her room with the heat on and not socializing sounded like my mom! They have individual units in their rooms and the aides will come in every morning in the summer and turn her air on and my mother will turn it off. When I go there at lunch, I have taped the buttons on her a/c to leave it on and darned if she does not find a way to get the tape off! I was told they tend to feel "cold" a lot as they get older. I guy her tons of short sleeved shirts - she wears her long sleeve shirts. However, I also think they want to hang on to whatever they can regarding their own decisions and their own way of "living'. Even though it drives me crazy I have to feel sorry also - I am sure they are petrified to feel themselves mentally "slipping away" and they grasp hold of whatever they can for security and comfort. I have also found that my mother loves having tons of stuffed animals in her room as she used to have dogs and cats in her home all the time. Not only do these bring back some memories but they give her that secure feeling when she hugs them!
You are SO right that there is a good part of us that go to help ourselves feel good also and to feel like we are doing the right thing. That is a good part of why my son and I go also. We know she is safe and secure and, when no one else in my family visits her, WE are there for her - and she knows it! Give yourself a BIG pat on the back!!!!
Bottom line, I go for myself. Not for her. Sad to say but true. If I go, I feel that I did the right thing. And she enjoys it at the moment it is happening.
And, yes, at home she just watched TV and sat around (at the end). The difference, of course, is that in the AL she is safe in every sense of the word, and she gets her meds. That was the biggest thing for us.
My mother has not been interested in doing anything, even before she went into the home. Today I got a smile. But she refused to watch anything except Auntie Maine over and over. So today I got a backup of the movie, for I am sure she will wear it out.
Yes, it is hard for all of us. This has been one of the hardest things I have ever faced and endured. It is something I have absolutely no control over. I cannot make anything better, only to try to have control over me. While again, that is hard with the guilt that tugs at me, I relive the moments in my mind often when she was still at home, realizing why I felt forced to move her to a safe place. She was so afraid, always telling me, keep calling me. I was calling 9 to 10 times a day to tell her what to do. Always afraid to the point of having panic attacks that she would get hurt. For today, I am still able to tell her i love her and how cute she still is. She smiles at how cute she is. One day I know she will not smile at me because I am her daughter. Often I have heard, if God led you too it, he will get you through it.
I pray for that strength and I pray for all of you who care so much that you are also here to help me, and to get the strength and support to help yourselves for all you are giving of yourselves.
It doesn't necessarily mean she's not happy. It doesn't mean that she's bored or miserable. It could just be a symptom on her disease. Of course, I would discuss it with her doctor to make sure what is causing it. There are medications that can lift the mood or help with anxiety. I would explore them.
Cymbalta has done wonders for my loved one. She has advanced dementia, but is still rather social, though she can't have a conversation anymore. She does seem upbeat and likes to wheel around the unit saying hello. Most of the residents in the Memory Unit have lost their ability to talk. Most can smile, but they don't have conversations.
We had a fire and moved into an apt at a IL place. Our home had to be rebuilt (part of it). It confirmed with us that we NEVER wish to live anywhere but at home. We were paying $3,800 a month for a one bed. If we added medical the bill only goes up. IMAGINE what you could buy at home to keep mom in her home. The minute we were able to move back home, we were ON IT. Our checkbook was heavier now due to less output of $. Some IL places rent out a room when there is a fire in someones home. The IL hopes you will fall in love with their place. With us it just confirmed we were not suited to living in such an IN YOUR FACE living. Meals at certain time, everyone knowing your business..bla bla. We were not social animals. He was 87 when we had the fire. I was 72. He died at 88 IN HIS HOME with me by his side. Our kids just have to wait for our money as we were determined to do it our way. We even set up our TRUST to read that we were to be kept at home and money to cover the cost of care IN OUR HOME. Not everyone can do this, I understand that. We would rather move to a smaller house than to live in a facility that is NOT our home. Now the home is mine and my kids cannot get me out no matter what. They must hire someone and it has to be followed to make sure whoever is taking care of me AT HOME is doing their job. We are healthy people. My partner was extremely healthy and just died from old age and Parkinson. We were able to manage the Parkinson and did quite well. All the Care Homes do is EAT your inheritance.
I've mentioned that I sing with a small group that does programs at care facilities. Many of the ones we visit have 50-100 or more residents. The average attendance at our programs is 10-25. Music does reach some people that don't respond to many things, but even that only brings out a minority of the residents.
Here are 2 things that did work, albeit not a 100% fix:
1. For a period, I hired a "friendly visitor" from a local church. She was a senior lady on a fixed income and her hourly fees were reasonable. She visited mom twice a week for a couple of hours each. We pretended she was one of my friends' mom (b/c we didn't want mom to know we hired her). She would either take short walks around the facility with mom, talk to her, try to engage her to do crafts activities, etc. After a period, we let her go for other issues.
2. The activities director will enlist my mom's help in "assisting" with her classes. This is just a ruse, but mom is more likely to participate if she thinks she's helping someone. So the director will have mom organize beads or gather crafts materials for her classes, etc. Again, this works 50% of the time.
Other than that, I am very involved in mom's life and when mom stays over my place on the weekends, I will space "play dates" with her senior friends in the area or do one activity with her (as anything more will tire her out).
She does sleep ALOT these days. Mom will be 90 in the fall and has early stage dementia.
If your mom happens to be living at home:
Did you check to see if maybe she may have experienced a recent death within her social circle? Sometimes if someone close to us dies, it can really have a negative effect on us. If this happens to be the case, she may actually be grieving, and this can take time. Sometimes people even grieve for years.
Possible rejection or harassment:
If there's something going on in the community causing your mom to self-neglect and not be her usual self, you may very well want to look into this and take the initiative to stop whatever it is that maybe going on. I know all too well the negative effects of being hatefully harassed for no reason when you've done nothing to deserve it. You definitely want to find out as much as you can take what you know to help stop whatever is going on.
End-of-life stage:
When someone is nearing the end, it's been said that they start withdrawing from others around them, and they also tend to lose interest in things they once enjoyed. They also tend to sleep more as the body starts shutting down. This is because the person experiences reduced appetite during this process.
These are some things to explore, because your mom has a right to have the best life possible for the remaining years she has left.
When we went to visit in the afternoon (after PT) or in the evening as asked her what she did that day, she would say "Nothing. I hate it here. I want to go home." Home meant she was doing the same thing there that she was doing in the rehab place. She'd sit around all day watching TV, getting no exercise or visitors.
She truly thinks hospital/rehab staff is there to cater to her every whim. "I don't like the food. When can I get out of here?" was constant comments. My Mom lives in her home of 50+ years and my 65-year old brother lives with her (has all his life), so he bears the brunt of catering to her "needs", i.e. taking her out to the grocery store, local restaurants for meals (she doesn't cook anymore and he never has cooked for himself), picking up her medications. She's "ruled the roost" forever and after my father died in 2008, my brother became my father's replacement (for fetching things, driving her to the store/drug stores, going to get something eat) so to speak.
I schedule and take her to her doctor appointments, set up PT/OT when necessary, balance her checkbook, and visit/call several time a week and do some of the errands/tasks she asks of me while I'm there. However, it never ends. My brother is very passive-aggressive so he tends to not do the little tasks she wants done around the house, so she has stopped asking him. Consequently, it's ME that gets these lists of chores to do when I visit. (My do-nothing sister lives less than 1/2 mile away from her and NEVER visits or calls. Talk about my anger and frustration building up???? Everyone tells me to "let it go" -- but that's way easier said than done!) In the meantime, things still need to get done (showering my Mom, making sure she's not eating the food she buys at the grocery store and then puts in the refrigerator until it spoils, cleaning out the refrigerator, wiping up the crumbs on the kitchen counter -- my brother doesn't even do THAT. God forbid my brother should throw away spoiled food on his own without Mommy's approval.) I have to wait until I know they are out of the house and then I "sneak" over there and throw out spoiled food and just crap, in general. My mother screams like a 5-year old if I dare throw out anything that is "still good" in her eyes. So therefore, I have to do the dirty deed clandestinely.
My mother has always been a control freak (hence why my brother lives with her) and it's just never going to change. I have to accept that and live in her world. That said, you have to live in your Mom's world. I know it's frustrating!!!! You have to come to the reality that she's doing what she wants to do. No amount of cajoling, begging or pleading is going to change her at her age. I want my Mom to be realistic and realize she can't keep everything, but no amount of explaining, reasoning, talking, begging, etc. will change her mind. This is what happens when dementia/cognition problems set in -- it only gets worse -- never better.
Sorry to not have words of encouragement, but my only advice is to go visit your Mom, try to be upbeat, attempt to have a pleasant conversation, then leave and go home and have a glass of wine. Know she is getting 3 meals a day, is clean and relatively safe. Don't beat yourself up. {{{{HUGS}}}}
Like a dam with many slot canyons in it, remedying the situation for one nutrient without resolving it for other doesn't increase the water level behind the dam because it will simply continue to flow out from the other slots.
I would look into a chelated broad multi spectrum multi nutritional supplement like Q96 as I've personally and in others I love and heard and seen amazing results cognitively, mentally, and emotionally within even a week or two on it.
I am disappointed but not surprised. She has never in her life been a joiner. She criticizes people before she gives them a chance. In her last place she told me: "No one ever knocks on my door to invite anywhere." (BTW, the staff informs her all day long of activities.) So I responded with: "Do you ever knock on anyone's door?" No, end of conversation.
She is 90, acts like a spoiled child and expects to be treated like one. It never has and never would occur to her that someone else might need a little company or cheering up. Having said that, the meds worked wonders and I thank God for them every day.
1) When I visit her at the ALF, I keep it active because I know most of her time is spent sitting and doing...well nothing. We walk around the facility (we meet and talk to the other residents...yes I have to do the introductions. "Hello my name is X, I am Y's grandson, what's your name?"), getting her to play the piano (she can play songs from memory...and its great when the other residents slowly gather around), I read the newspaper and magazines to her (and I try to find a table with others (yep, they might be sleeping or otherwise resting...so I usually find ones that make eye contact with me...they are usually interested.) Now it has become a routine, so other residents see me with the paper and walk or roll on over for my reading of the paper).
2) I talk with the social/activities coordinator to let her know that when I am visiting, I can help out with getting a card game going, taking residents who are wheelchair bound for a roll around the facility. This fosters the introduction between my care-receiver and others...as well as lets the coordinator know I give my blessing for her to involve my care-receiver in as many activities as possible. (When there is an activity such as cards or crafts, get her over there. Use prodding, and just tell her its part of her job if there is any resistance. Take her to every religious church service, no matter the denomination.)
3) My care receiver really just wants to be home (her childhood home...not the one where she lived with her husband for 50 years), and is all too happy to mention it many times during my visits with her and always asks why she can't be home. I found that if you can do some research to find out how your care-receiver did chores, what they did for work, daily activities when they were at home, who they socialized with and what they did...and try your best to replicate those types of things at the ALF, all the better. My care-receiver was a busy body, so the staff knows to seek her out to fold the laundry/towels, help others by playing cards with them, play 5 songs on the piano twice a day, talk with one new person everyday (due to dementia, there is always someone there who she claims is "new"...even if they have been there for years.) If I relate any activity to a meaningful task for her...she usually is ready to go!
4) Our care-receivers are talking to us with their actions or lack there of...we just have to listen...and that is so tough for me at times. I am getting better at it. I echo what another mentioned about our care-receiver's now not as comfortable socializing due to knowing something isn't quite the same with them...they just don't know why. Once they see us interacting, creating the introduction, fumbling through the interaction, their confidence and comfort level might rise. My care-receiver is always wondering how I know "all these people." The good days are when she wants to introduce me to one or more of her "new friend's". All the best!
He doesn't socialize much either but he does sit in the living room a lot vs sitting in his room looking out the window.
Aside from that, try to remember that you, and likely the facility, are doing all that you can. Your mother may choose to be a loner and there may be nothing that you can do about it.
My mother got much the same way except that she was good with the staff. Before the nursing home, she was worse in general. But she never would take part in all of the socializing the nursing home provided. She liked her room, her TV and the treats I brought on my daily visits, but she became more and more averse to interacting with other people.
Work with the doctor, but understand that antidepressants are tricky and can have side effects. They work well for some people but can make others worse.
What I'm saying is don't expect miracles. Sometimes they happen, but more often we have to accept the fact that people with dementia and pain issues have a right to how they want to live their lives. Keeping her pain free (if possible), safe and relatively content - even if she just watches one DVD - is better than a lot of anxiety (in my opinion).
I hope that the doctor can help.
Take care,
Carol