I did not want to celebrate the movie Clueless or sign up for Paramount Plus Streaming, but I did want to see if I could copy cat from the ad asking me to sign up for it.
First Try is cute, but considered a Fail, even though Beau always makes me feel happy.
I did a little better with me on the next try but really, its a lot of work and it will not happen again. I did like trying it.
I am smiling in this photo, it is not current, but 2 years old. I am dealing with bobs physical illness but its the Mind Illness that is the biggest problem and is the reason I need to rest my mind by focusing on something else.
Bob has lost most of his words, and I have to figure out what he wants, needs or is telling me.
I helped him back to bed from the bedside commode, and helped him with is pull ups and said, I am going to the desk top to pay Bills, they are all due today. I explained why I would be out of his sight, because he gets upset if he can't see me.
30 minutes later, he yelled down the hall, I need to get off this crapper if you can get time. I came to the bed and said Bob, you are in bed, not on the potty. He looked around and said Oh, I was asleep and thought I was still on it. I meant I need a clean shirt. His filter for what he says is gone, he just says whatever he is thinking and curse words are common. One of the PT's called him on it, and said, God is not damned Bob, and Bob said What? He had no idea he even said it..
I have found I can not reason with him at all and it really upsets him.
With 24/7 of all of this, I need an escape! These drawings allow me to sit where he can see me and tell me stories for the 87th time that day, and lose myself without him noticing.
If any of you have death with Alzheimer's and have suggestions, please leave them for me.
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| Crayola.com kitty kat |
My Therapy Kitties, One Dark, One Light
Just another bit of Procreate Therapy for my stressed-out brain. It makes me stop Thinking, changes my focus to something I love to do..
Below is a good example of mind therapy for me. It took a lot of time to do the one below yet it looks simple. I used an old photo of Beau and his Mama and used a copy cat drawing from past post. This one takes concentration and focus!
Just what I need.
Telling this to all of you, is like telling it to you in person.
38 comments:
The one thing I recall being told is: "Go where they are." If Bob says, help me off the toilet, reply, of course I'll help you. If he says it's raining outside on a bright and beautiful day, say yes ... maybe the rain will stop soon and the sun come out. If he asks you to turn the TV on when it's already on, go to the TV, make a gesture to turn it on and ask him if this is the channel he wants. GO WHEREVER HE IS, in HIS MIND. It will work best for both of you ...
I hope you can find a new way to comunicate with less words? and I hope you can find peace in some things like da beau or drawing or doing something just for you...
And BTW, that PT who called him for using bad language: take her aside and scold her for it. She should know better. Dementia/Alzheimer's patients often OFTEN use bad language and it should be overlooked, PLEASE, and even more often FORGET words. The "listener" probably knows the word they mean, can fill in the blank. Don't admonish the patient, rude/not necessary, demeaning to Bob and to YOU, his wife and caregiver.
I agree - be with Bob wherever he seems to be in his mind.
I think your ways of dealing with stress are working well for you.
Hugs.
Big healing hugs, my friend. You'll figure out how to make this easier for the both of you.
Have a fabulous day and week. Scritches to handsome Beau. ♥
Glad you have something that works for you as mental therapy for yourself!
My main experience of "dementia conversations" was with my dad. (I did not live with him though.) As others have said here, it was no use trying to correct strange things he said. He seemed to dream a lot when nodding off and then thought those dreams were reality. Like he might tell me he had been off travelling for a weekend, when I knew he could not possibly have been... But to him it was "real". So at least when it's not of vital importance probably better to go along with it!
I'm glad you are taking the time to work on things like this. It is a nice escape for you. What you are going through is so hard. ((HUGS)) Of course Bob can't help himself to say those things. I like you behind the bars with the smile. Take care and keeping all of you in my prayers.
Sandra I'm so glad you have the blog and your iPad to draw both put your mind in a good place.
Hugs X3
Cecilia
I'm glad you have the blog and your art to give you a little break. Alzheimers is very difficult.
I worked for years as a nurse in long term care and skilled nursing rehab. I think the best advice is to just go along with what they say. If they are in the past, go along with it and talk to them about their life then. Don't get down on yourself when you get frustrated; you are doing the best you can and it's exhausting. And if you can take a break once in a while, do it!
Please take as many sanity breaks as you can. Love, hugs, and prayers. ❤️💕❤️💕❤️💕
We're glad you have the distraction of your art to help you. The advice already given is what we've heard works best since we have no experience with anyone in that condition. Just know we are always thinking of you all.
I love the last one, it is fun and so unusual. And you behind the bars is excellent!! But mostly I am so glad you are on the computer again, as I had feared you would lose your mind. You NEED this!!
Oh dear Sandra, I know this is such a hard time for you. I am glad you have Beau and also your iPad, etc. to give you some kind of "therapy". People here on the comments have given you excellent advice. I know it's hard to remember these things when we are feeling so exasperated that our loved one just doesn't seem to know what he's saying or doing, etc. I remember my Daddy used to ask when we were going back home. He was in the house he'd built and lived in for over 50 years, but in his mind I think he was thinking of his childhood home and his parents. My mother used to see her father and her sisters (all deceased) in strange places, like under the bathroom sink (while she was sitting on the pot), or at the dining room table. In her mind they were there. Maybe they were and we couldn't see them? I don't know, but I remember trying to keep a positive thing in my mouth to say instead of correcting her. It's harder when it's someone you love than when dealing with a patient in a nursing home that you don't really know personally. We don't want them to change and be like that. May God give you grace and wisdom and patience...and please take little sanity breaks as you are able. (((HUGS))).
I believe Mari's comments are spot on. My brother passed away from Alzheimer's in 2021 at the age of 71, which is the same age I am now. (He had a different mother.) He became aggressive and confrontational, making it very challenging to handle him. He was also accusing my sister-in-law of being unfaithful, among other things. It's a terrible disease.
Hello,
I am glad you have your art, it is a good way to take a break and enjoy doing something you like. I learned things my father would say, is best to ignore. He was not himself at the time. You are doing a great job, not many people are able or willing to do.
Happy September, Enjoy your day and the week ahead.
I read all the comments. I agree with going where Bob is. Don't argue. No correction. Just say okay. I don't know too much about having to live and deal with that yet. I wish you just had a couple hours out a week to walk Walmart.
I think the art work is a great start.
Your new header looks so good ... you look so happy. (Which, in turn, makes my heart happy.) That's so smart, discovering something you CAN CONTROL changing your focus and occupying your mind. Everyone's comments are spot on ... especially Zoolatry. We can all learn from one another.
I hope your Birthday Month contains better things ... untie the ribbons!
I don’t have a lot to add to what your blogging friends have already said. I agree with them and am also glad you are getting your mind therapy through your iPad and art, which is a balm of sorts. Alzheimer’s is a cruel disease.
I'm so glad you have a release with your art and your blog, you need to give your mind a break too. I agree with the others, go where they are. Great big hugs from all of us.
Have you watched the interview of Diane Sawyer and Emma Heming Willis? I recommend it. Louis Dean and I actually watched it together and he said, "Thank goodness I don't have THAT kind of dementia." The thing is - we are all on different paths with this journey through dementia/Alzheimer's and anyone can have an opinion but unless they have the experience it doesn't count. There are no solid rules and it seems like everything we do is playing it by ear. That said - YOU are doing great in that you have not lost your mind!!! I love you and am so proud of you and that you are trying your dead level best to not only take care of Bob but to take care of yourself. You GO, Girl!!
You need all the mental health breaks you can get. I have no wise words, just prayers.
Everyone who advised to be with Bob where he is at is very correct. We call that 'be in their moment'.
Sometimes it helps to keep external stimuli at a low level, not too hot/cold, noisy etc. Soft but bright lighting is good too, to keep shadows minimal, they can harbor ghosts and other scary things. The bad language...well, since they cannot find the word they need they will voice other ones. Yup...let it be. You need deaf ears and a strong back to let all that roll off, it is the dementia, and not the Bob you used to know so well.
If you can find an old photo album or make one, old pics of him, yourself, and other family members is something he might enjoy looking at, and describing his thoughts about what he is seeing. Explain everything in simple terms, and break down tasks into steps, have him do one step before telling him the next. Don't give too many choices, he'll get frustrated trying to decide. Smaller jigsaw puzzles might distract him; as will things that he used to do such as fixing small items, or a craft. Those airplanes were ga great idea! Maybe get some Lego to make structures with? All good distractions if he is upset and getting agitated. And Beau, now there is therapy who lives with you! Those two adore eachother.
Its all one moment at a time, every day will be different, just keep on as you already are, and yes you are doing a wonderful job, though I know it is HARD.
Glad that you have the artwork and blogging to help and give you moments in a different environs.
Praying for you and also for Bob and Beau. You are stronger than you think, and God is with you every step of this journey.
Zoolatry is spot on. Mr B used to try and correct his Mum or reason with her and they would both just get angry. About 5 days after her birthday she told me it was her birthday today and no one had remembered. Of course he jumped in and said something like 'it was 5 days ago and you have said that every day since'. She just looked crushed, disregarded. About 15 minutes later she said it again to me and noticing all the cards on her table I said 'it looks like lots of people have remembered. You've received all these cards.' She lit up and read every one of them carefully as if seeing them for the first time and we never heard about the birthday again. (i guess if we had we would just roll out the cards again). Mr B couldn't get his head around someone having a mind like a moth eaten blanket - bits work, bits don't, or only work sometimes. The out of sight thing was a real problem for his sister the main caregiver - she couldn't leave the room without an outbreak of screeching her name. There were times when MiL kind of new her mind was foggy and they were dark times, anxious, frightened, searching without knowing what she's looking for, lost, vaguely aware something is on the otherside of a veil but not being able to lift it.
Keep up the artwork - it is right-brain engagement and a form of meditation. And we get to enjoy the colour and creativity of it😉
Hari Om
Sorry I am late to this arty party - your piccies delight, as always, but most importantly, as said by others, I am so glad you have that distraction.
And having dealt with Alzheimer's and several other dementia conditions, I can only agree and emphasise what has already been said here by others - let Bob be in whatever time/place he wants to be (other than sorting out the difference between bed and pot, which is fine to do). You don't have to enter that space yourself, but it's best not to contradict... one active thing that you can do, if he is out of sync, is to engage him in a question and answer session. An example that often came up with some of my patients was that they were hungry. "Oh really, Sally? Can you tell me what you had to eat earlier?" This may or may not help them to realise they only just finished breakfast...really it is very much in the moment and of the mood of the day that we have to constantly manage. Big hugs, YAM xx
Sorry, I'm back: remembered one more time with the dementia/ALZ thing, when it had progressed. Walked into the room, I'd interrupted Mom chatting ... she spoke to me in a somewhat angry tone: "can't you even say hello to your Daddy?" For a moment I'd forgotten that she'd begun to HAPPILY visit with those she loved, long gone, those I could no longer see. Of course, I gathered my thoughts, went toward the empty chair, gave my dear but invisible Daddy a hug, told him I loved him ... and so the story goes. My Mom smiled, said she loved me. That, in the end, Sandra is the whole story: whatever happens each and every day, every moment of the day, just keep the LOVE going back and forth, that's what makes the difference.
I have no experience with Alzheimer's or dementia so I have no advice. I do like your art work though. Playing in Procreate is a good way to escape without going anywhere.
I can relate to needing to get away too.
Unlike others, Sandra, I have neither experience with this situation, nor advice to give. You alone know Bob, know the history you have shared together, and probably have an instinctive manner of dealing with the sad predicament in which you now find yourself. I am sure there is no right way, but equally no wrong way. It must try your patience to the limit, and I am glad that you find ways to escape a little. I hope that I will never put anyone through this. With my very best wishes - David
It is a difficult situation, and one that I have not experienced to the same degree. My late mother was starting to show signs of this terrible disease, but passed away before progressing to the extent of Bob’s situation. While I have no advice beyond what others have offered, you are doing the best you can for everyone, Sandra.
I'm glad you are finding ways to get some of your own mind therapy.
Sending big virtual hugs!
Sandra, I am so thankful that you have your drawing to help your mind focus on something that makes you happy. As caretakers, it is most important to take care of ourselves so that we can be caretakers. Thankful that Beau is there to help you focus on other things as well. take care my dear friend and know that I am praying for you and Bob.
This was really touching to read. I can feel how much you love Bob and how hard this is on you too. I think it’s amazing that you found a creative way to care for yourself while still being there for him.
Both of my inlaws had Alzheimers and dementia. It was so hard but the advice you have been given is right on. Be in their world.
I have done that with my friend Lynne. She is in the last weeks of her life now and it is so wearing on her daughter Karen. She doesn't talk, eat or be out of bed now. So, So sad for all of us.
One thing I used to do for Lynne when she would get confused and a bit agitated was ask her if she would like a cookie. Cookies cured everything and the subject would be turned around.
You dear friend are doing the right things and deep down somewhere in Bob's inner being he knows it too.
Prayers continuing. So glad you are doing art therapy. Its awesome.
Love you
Sue
Looks like you've tons of suggestions already...I just nodded my head...agreed with everything my friend said and we got along famously...and I cried alot. I got tired of listening to others constantly trying to correct her...
BigHugs
Donna
Wow you have loads of comments with suggestions and support. You are having such a hard time being his carer. I am amazed at how you can keep at it. So glad that you have found an outlet in your iPad and art. I do have some understanding of caring for a loved one with dementia, my mother. However, I was still working. I took 3 months leave to care for her but then I went through hell trying to find a caring home for her. (That is a story in itself) So unlike you I didn't have to care for 24/7 . I brought her home every weekend. It was such a sad time. I remember the head nurse telling me "You have lost your mother and it is fine to grieve now because the person in your mother's skin is not the mother you knew" That helped me cope mentally very well. When she said awfully hurtful things, I would remember the nurse's words, "that person isn't your mother any more". Good luck in the future and keep using Your iPad and Beau as a comfort and distraction. Sending hugs.
Be in the moment is the best advice I can give. For me it was like dealing with a very young child, and remembering that they are living in the current moment was the best advice I received. It is difficult. Painting, art, being able to write about it and being able to vent is a blessing. YOU are AMAZING and AWESOME! Keep being you. Love Barb
I am glad that you can "talk" to us, and that we are all here to listen. We went to see Jeff's Mom (and family) on her 95th birthday, and it was hard...very hard. But we don't have to live with it like you do. God (and Beau) be with you.
I am so sorry that you have to deal with all of this. This is hard things and when they just say hurtful things, it just makes it worse. I had a friend who had this as well. She tried not to let it hurt her feelings. She said that wasn't easy though. Sending you lots of love and huggs.
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