Are You Accidentally Harming Your Loved One With Dementia?
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- เผยแพร่เมื่อ 8 มิ.ย. 2024
- It’s our mission to make dementia caregiving easier for families caring for a loved one with Alzheimer's disease, frontotemporal dementia, lewy body dementia, vascular dementia, or any other type of dementia. We believe that in order to create a more dementia friendly world, we must first create a caregiver friendly world. That's why we create free educational training videos like this one so that anyone with an internet connection can get access to dementia care information.
Hey Careblazers! In today's video, I want to shed light on something we often do with the best intentions, but it might not always have the desired outcome for our loved ones. Join me as I share a heartwarming story and the crucial question you need to ask yourself before planning something special.
🤔 Are you unintentionally causing distress to your loved one? Watch to find out how to make sure your actions have the impact you intend!
🎁 Share your experiences! Have you ever realized that what you thought was best for your loved one didn't quite have the intended effect? Let's learn from each other!
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In case you haven’t met me, my name is Natali Edmonds and I am a board certified geropsychologist. That means that I am a clinical psychologist who specializes in working with older adults. One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
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I booked a few days at the beach for my close friend with dementia because he said he wanted to see the sea again. He packed his bag weeks early (and unpacked it again). Imagine my dismay when I went to pick him up and he said, 'What have we got planned for today?' He did have a good time. I'd arranged a third person to come along because someone needed to be with him all the time. We locked the doors at night - we did hear him try to go out in the night. He was more muddled because he was out of his normal environment, but he did enjoy himself. I was very tired - he has more energy than I have. It is the last time we'll do it.
As mentioned, ask yourself what the motivation is, but also ask, "Is this good for me?" I've been caring for my LO for a long, long time. First, I was going to her home 2-3 times a week to clean, pay bills, take groceries etc. which she resented. If I didn't go, I'd get a call at work or late at night begging me to bring groceries or attend to some other thing now!
Then when she had to take meds, things went totally sideways, so I moved her in with me. Everything (even almost five years later) is measured through the light of how mad she is at me about this. I offered to take her to church, NO! Watch a local church service on TV, NO! She wanted to color Easter eggs, but then she hurried through it and went to watch TV. Everything was still on the table when she was mad because we didn't color eggs. She asked to visit the graves of family members, which was a whole day plus considerable driving. The next day she had no memory of the trip and was mad at me for not taking her. She said I missed her birthday even though her gifts were still by her chair. And so on. I can't win so I just say, "We'll do that tomorrow." That helps keep both of us a little happier. Guard your own mental health and avoid frustration.
I totally agree and regularly visit your videos to learn more. My wife was diagnosed with FTD this year. Her twin sister died in December from FTD complications in December last year. It was our 40th anniversary this year and we had great plans to have a big party with a live singer, disco etc with lots of people attending. As time went by and I asked my wife about these things (and as we go out every day to meet people) I began to realise that busy places and crowds were causing her stress so decided that we could have an intimate meal with our closest friends at a restaurant which went down well as there were only 10 of us. I was so anxious to give my wife a great party as she retired during COVID was 60 during COVID and had our 40th anniversary and we had done nothing to celebrate but realised that she didn`t want a big fuss. Glad I made the call and took her to Australia instead and spent some quality time with our daughter which was priceless.
My mother has dementia- she used to love to go to the casino. She would ask me pretty often if we could go. About 2 1/2 years ago my husband and I took her to a casino day trip. She wasnt distressed but wasnt interested at all and wanted to leave very soon after we got there. I realized she didn't want to go to the casino: but she was still enamoured with the"idea" of going. So now when she asks to go to the casino, i always say "yeah!wecan go!" My Mom gets the "happy" in that moment, which is all that really matters.
You are so right.
I had the same experience with my uncle. He loves to go to restaurants. I would take him to restaurants and he would order his food say, thank you to the waitress. Then want a box to go home. That was the end of that . We didn’t eat.
@@rc8764 we still go to restaurants but I order for him. He can't process all that. I ask for a quiet spot and we go early before the sundowning. He likes to eat finger foods like chicken strips.
@@michele21auntiem that’s so sweet.
After you started talking about the example, I knew immediately that the carers are doing these things for themselves not the invalid, because they think everything that was, still is, and it is not. It is so important in all of life to be very aware that our choices are not controlling another person. Nearly everyone does what they themselves desire and use subtle, often unconscious, methods of manipulating others to conform to achieving their own agendas . Great point doctor!
Before my mom was non-verbal, I asked her if she wanted people to visit-and she said no. So now, I try and keep traffic to a minimum, except for hospice nurses and caregivers, a little music, and no noise. It seems to work well for her, but I had two cases like this video. At the early stage of the illness, I took her to a restaurant for her birthday-she hated every minute. Toward the later stages of her illness, again for her birthday, I had a small party at home-and she loved it. I guess, as you said, things change, so just be opened to doing what your loved one preferes, even if not what he/she may have liked in the past. Thank you so much for this!
This is so true and I am really beginning to feel the shift in what my Mother use to love and what she needs now and it feels like it is rapidly changing. There is a lot of grief in witnessing this change especially for the caregiver. I am really struggling with some of the things I am doing with full heart while I am also picking up on subtle signs that it may be creating more stress. It feels so strange and heartbreaking.
I’m dealing with my husband, but feel the same way. I want to quit feeling so much grief, sadness, ect. Blessings to you and your mom.❤
@@stacieboucher1570 Thank you. And yes there is a lot of grief. So much grief. It is a hard path to walk, the rules are always changing and everyones experience is different. I have to live day by day and moment by moment. I take lots of deep breathes and find grace for myself and for my loved one.
@@christinalovell5880 Thanks Christina! To love much is to hurt much. Sad is better than mad. Acceptance is key. Still trying to get there!❤️
You definitely need to determine what your loved ones individual needs are. The other side of the coin is perhaps the loved one is anxious about going back into the facility because there is something they cannot verbalize to you. As was the case with my Mum, and verified when an ambulance driver quietly told me to get my Mum out of the rehab facility she was in. Without going into detail, I should have realized my Mum’s agitation was justified and should have removed her sooner.
Thank you for your thought processes and insights.
I could have recently put my dad in rehab and nobody would have judged me wrongly for doing so, but I chose the hard road… I know for sure that I was right in doing so, even if one person said that their relative did well in the place I did consider.
Makes sense. I told my mom's nursing home I wanted to get married there. They were supportive & so helpful with details. She was in a moderate stage, and we knew she'd be okay in a familiar setting, as long as it wasn't long & drawn out.
We kept it simple, & did a short reception; all residents were welcome. It worked out really well. Everybody seemed to enjoy it.
That is wonderful 💖
We had a special day at the care taking facility for Mom's 100th birthday. She had been counting the days until her birthday for months. But the day after her birthday she seemed even more confused than before. I think it was just too overwhelming.....I don't think we will do anything that involved in the future. So, yes, I agree with your advice.
With my wife diagnosed with dementia I find routine seems to work
I can appreciate that your channel is primarily directed toward those with dementia. And, I think your tips are also applicable when dealing with life as a care blazer for someone with Parkinson's disease. Folks don't automatically put PD in the category with dementias, but there are intersections in the lived experience (although stats say that about 75-80% of those with PD will end up with related dementia) This video is particularly relevant as stamina and energy levels decline.
If they don’t remember the past, it makes sense that “in the moment” might be the new best.
This is also very true with other medical conditions; including mental health diagnoses!
true stress is a main trigger point for me im auto immune causes a lot of inflammation should try to keep inflammation at a low level best you can right foods limit smoking and drinking over eating
PREACH!
Every time I catch one of your videos it’s perfectly timed for me. We cared for my FIL for eight years and finally had to put him in a memory care facility. Every Monday I take him to the same restaurant we have been going to for years. Last week he didn’t eat, he rarely speaks, and he seems anxious. I guess it’s time to maybe just take time to enjoy lunch with him at the facility.
I can't say how great this is. It is wonderful!!!
You are do right!!! I’m caring for my husband and when he was 18 he worked with heavy equipment which he just loved for a very short period!! Fast forward he’s 79 and I may arrangements for to watch heavy equipment being used and get him to recall some funny stories!! Great right, NO!!
It made no since to him, why were we there, it served no purpose!!! He was ready to leave 😢. Now I know😊
Beautifully described. We want so much for our loved ones! But we have to try and see it from their current perspective.
I agee, I took my mom out once not long after I placed her in a health care facility, she was enjoying it at first then started to get agitated, upon returning her back to the facility she was very upset not wanting to get out of the car. I haven’t taken her out since except for hospital and doctor visits.
YES! my husband has FTD we have one son and have always done everything together. We have noticed that large gatherings, shopping, concerts, movies even crowded restaurants now cause him to be overwhelmed. If we go out to eat we go early, shopping only if necessary and for short amount of time, rent movies for home. Crowds are anxiety producing. We are sad that our family outings are no longer possible, but understand his discomfort. Thanks for your always good information and for keeping it short and to ghe point.
One Thanksgiving we took my Mom through a drive thru zoo where animals roam the property. We ate chicken tenders & fries from the zoo’s “food court”. My Mom had a fantastic time & we all loved the zoo. So happy we did that!
It's so important to take time to oneself. This is a hard thing to go through, very hard for the caregivers and family. I like using reading, books like 30 Days to Reduce Stress by Harper Daniels are simple reads and the Tao Te Ching and many other books. It's so important to get respite.
Your enthusiasm in helping is so sincere. I feel your love in everything you say. Thank you 🌷
I recently had an experience just like this...We were having a Fall Festival at our church and costumes were optional... I asked my LO if he would like to go and would he like a costume because I was going to have one... He said yes, that would be fun...I let him pick out his costume (scarecrow) and I picked out mine (bumblebee). I ordered the costumes and they came and he was all excited...I got him dressed and I got dressed and we went to the festival.... When we got there, the first man he saw was not in costume and that triggered a very angry scene because I had intentionally made a "fool" out of him because this one man was not in costume... It turned into an ugly time, when I was only trying to do something with him that I thought he would enjoy!!! So this video hit home directly for me....
I think most all of us want to do less or less extravagant celebrations as we age, even without brain changes!
Excellent advice! Thank you for all you do. ❤
Agreed and here's the thing, for 17 years I stuck to my promise to care for my LOWVD + Parkinsons which over time, I think has caused me a great deal of stress & distress?! Every year, for the past four years I have been hospitalised for a kidney infection, urinary tract infection, COVID, and now 6 weeks ago, hospitalised with chronic diabetes and the cause being STRESS! I am 1.8m tall and weigh 93kg's, so I'm not obese and now this!
So in short, I became profoundly deaf after Covid, my eyes have deteriorated since my diabetes incident, I have chronic back trouble, I am on meds for major depression and so the list continues!
Heaven forbid that I pass on before my wife!!! 😮
@@kevingrimbeek2106 so sorry to hear this. 😢
Thank you great perspective!
Thank you for sharing this, I'm going to share with my friends caregivers too
Sometimes it's because we don't want to let go of how things used to be. Now our loved one has a new routine to adjust to and other people. Some nursing homes have plenty of activities to do. I would encourage my loved one to join in. I would even learn the calender and take them to a fun activity🎉❤
Needed to hear this. I’ve been contemplating if it’s near time to stop taking my Mom to her monthly “Lunch Bunch” meeting. She loves to go out to eat, but doesn’t have any meaningful conversations anymore. She’s constantly up to the restroom and packing her purse to go home, while most others are still visiting. The other ladies say they enjoy seeing her. I suppose I will KNOW when it’s time to stop since I’m looking for those signs now.
Blessings to you, Dr Natalie, and Happy Thanksgiving!🦃🍁
Happy Thanksgiving 🦃 💖
Very good , thanks Dr Natali you have given food for thought ! You always help sharing tips etc we appreciate you ❤
Glad it was helpful! 💖
Good insight :)
That slow down voice was creepy. I appreciate your tips but I wish you'd edit that part to not sound so creepy. Thanks.
Thank you. It's so true.
Thanks for watching!
@@DementiaCareblazers, your videos have been such a great support to me.
Thank you
Yes. Very much agree.
My dear friend organized a get together of 3 other couples whose husbands have dementia. My husband does well with glad handing but when he’s in a social situation that in his mind highlights his deficiencies he gets agitated if he can't leave right away. He tried to push me out the door and then insisted on driving (nope!) I knew it was a potential disaster but I wanted to please my friend by attending. Now he’s on a one track thing about driving and I can’t take him anywhere with me. I was just making progress after another similar incident and now it’s back to square one. I appreciate the point of view of your video. Is the activity for them? Or us.
I love this type of
My mom has an eye appointment next month. I think i will cancel it. Yes, there is a chance that glacoma will arrive, but following all the instructions at the eye doctor isn't getting easier.
I have been trying this channel. I love the wisdom in it but I find there is a lot of unnecessary repetition. It would be better to make the point and leave it at that. However well wishes on dealing with a difficult subject. 💕
My mother lives in another country and she has not been diagnosed with dementia but I can see the signs of it. I usually visit her once a year for 2 or 3 weeks and it was always a highlight of her year but it all changed last year and this year I could see that she did not really want me there. She openly said that she does not like company and she was busy all day long and even in the evening when we sit down for dinner she would make sure the TV is on so that she does not have to talk to me. Then she goes off to her bedroom and listen to the radio. She was very happy when I left. Should I just stop going there since it causes her stress?
Maybe you can stay elsewhere (hotel?) and visit her. Not stay with her. Less stress?
My Mom has Alzeihmers and asks me every week to go to Macys to shop for clothes but when we get there she can never find anything she likes and she gets frustrated.
I think her disease keeps her from finding anything she likes does that make sense ? Than the next day she wants to go back . Its tiring and frustrating.
could you look online and let her see some of the things they have? that way she could window shop and maybe enjoy that?
@@davidvogel6359 We have done that but its not the same. Its hard for her to see on my phone.
Have you listened to Everywhere At The End Of Time?