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Lost12, I understand your stress. My mother has dementia and we live together. I take care of her by myself and feel blessed to be able to most of the time. It can be really difficult when she becomes aggravated and is rude to me. Fortunately that doesn't happen all the time. I also can become aggravated when she is unable to do the simple things that she used to be able to do easily. I pray for strength and willingness every day and it helps. Most days are great. She stayed at a rehab/nursing home for a couple of months after leaving the hospital and she hated it. I did too. Sometimes she makes comments about not wanting to live or maybe going back to a nursing home but she doesn't mean it and those thoughts quickly go away. I just listen when she tells the same story over and over or talks about things that are not true. It would only upset her if I try to correct her. I finally at this stage of my life, realize that I don't have to be right. Nor do I need to tell her that she's wrong. Only if it would put her in danger do I need to correct her. If I can help it, she will never have to stay in a nursing home again. My prayers are with you and your family.
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BRENDA MCCANN
Thank you for your advice! Every bit helps!
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BRENDA MCCANN I have found that a D-Mannose and Cranberry capsule once a day really seems to prevent UTIs. For about 4-5 months my husband would barely get over one UTI when he would get another. It would make him so weak he could barely walk. He couldn’t get into bed by himself. The doctor recommended that he have TURP surgery, which may have helped, but it seemed like before he was well another UTI was beginning. I immediately put him on one D-Mannose and Cranberry capsule per day. That’s been over a year ago, and he has never had another UTI, which is amazing because he has trouble remembering to drink water.
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My Mom nearly bedbound, but taking her outside in wheelchair still seems to make her feel better - seems more alert and hungrier (a very good thing!)
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Hi, my name is Bobbie and I am the caregiver for my mother-in-law. I am new to this and need some advice.
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Bobbie Henrie
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Gail Caperton hey Bobby oh, I ordered a book and I'm still reading it called 36 hours a day. It is an excellent source of information about dementia and Alzheimer's.
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Gail Caperton Thank you so much
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Gail Caperton
Oops! Got the name of the book wrong! I will buy 36 Hours a Day!
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Lost12
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Lost12
Hi Bobbie. One thing I have learned, when your loved one is in an angry rage over something they perceive is happening.... but in fact is NOT, is that they need validation to justify their feelings of anger. I don’t know if you are experiencing this with your mother-in-law yet, but it is helpful to know if you find yourself in that situation. We avoided a complete disaster because my father’s caretaker was knowledgable and knew how to diffuse the situation. It’s a good thing she did because my mother was insisting that I fire the woman because she thought she stole something from her house. It’s a daily battle......Best of luck to you and your family.
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Gail Caperton
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Peg Flint 36 Hour Day has been my bible for the last 3 years. Highly recommend it to anyone with an Alzhermers loved one.
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Hi Bobbie. Lost 12 is correct. My aunt is in an assited living facility, Memory Care unit. She constantly speaks of her siblings and mother being there at the facility. They have ALL died many years ago individually at different times starting in the 80s. when she sees me, she asks me if I've spoken with my uncle (who died in 2016). She asks me if I've heard from her sister (who died in 2009). She asks me my if I spoke with my father (who died in 2008). It is a continuing cycle. At first I responded that the person was deceased. She would tell me to stop talking nonsense. The next day she asked me to help her investigate the mystery of who threw her dead sister's body in front of her window. The psychologist advised me to go along with whatever dimension they are living in. Pretend that you will assist in the near future. It becomes a little game. They will become angry if you correct them. It is easier just to agree to assist with the situation. frequently they forget about it within 5 minutes. Sad and unfortunate.
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You have to take your time with these patients, they get very upset when they are rushed, and they may lash out. Talk about their life back in the day, their children as babies, and things that are pleasant.
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My mom has dementia and a colostomy. Our challenge has been that she forgets what it is and removes it! Thanks to a caring nurse, we found a solution. There are all kinds of colostomy bags and she found one that is more difficult to pull off. Also, at night she wears a onesie that zips in back so she can't remove the bag. Finding the solution took about 4 months, but our persistence paid off! So, my advice is to keep on looking for solutions and don't give up!
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Remember to never to take things personal. They are gems
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If you don't have an outlet, it would be very beneficial for you to find one. The stress of taking care of a loved one with dementia can quickly cause your own health issues. I would play soothing relaxing music for my Mother (Steven Halpren.) Friends and family who came to visit noticed how Peaceful the atmosphere was. I would take long walks, do Yoga, play with my animals etc.... anything to get a respite from the stress. It's not that we don't care and love our family members; we just need to come up for air every now and again.
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I think patience and understanding is the key. Showing LOVE is so important.
Thank you Marcella Brinkley
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We don't have a lot of money to spend on respite, but I found someone who is skilled with elderly, and she comes in just 4 hours a week, 2 hours on 2 days. This, although small, is huge. Just that little bit has given me a boost. And the fact that she likes and understands my mother is a huge bonus. I recommend finding respite for even 1 hour a week. It helps so much to know that hour is coming.
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After nine months I need to try some of these ideas.... 24/7 is a lot.
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Hello fellow man, I have very good results with the people I met from Rodina Self-care. A group of international volunteers. My father was within 2 weeks so much better that we gained hope again. You can also contact them and have a talk. https://www.myhappyfemily.com/rodinia-selfcare-gb
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I just want all to know we have learned 3 thing dealing with Alzheimer's/Dementia. The first is SALT, we noticed meals high in salt triggered extreme episodes of unawareness and disconnection from reality. So try limiting salt in every meal. The next is light levels, we saw that on days that were partly sunny and light levels in the living room fluctuated through the day that we experienced bouts of Sundowners syndrome. This was basically eliminated by maintaining consistent light levels in the room all day long regardless of weather conditions. The last goes to those with breathing issues, the medicine in a product called Combivent can cause significant memory issues. The drug affecting memory is Ipotropium, DO NOT let a hospital give this to a loved one!! The memory loss due to this drug is astounding in how fast and how completely it affects Alzheimer's. If breathing treatments are needed ask for Albuterol ONLY. This is all base on our experiences with our Grandmother and now my mother, Hopefully it will help some of you.
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Janet Hildreth
Janet Hildreth ,
I just thought I would join this group for some answers. Lately O feel like I'm sinking and do not know which way to go or what to do. I'm a 72 yr old widow taking care of a 90 yr old mother with dementia
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Janet...unless you take care of yourself, you will sink. Caregiving takes a heavy toll on us! Are you in a city? A rural area? Can you access a senior center? How about someone in your circle of family, friends, neighbors? There should be programs available to help you. Do you have Meals-on-Wheels? Your doctor may be a good resource as well.
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I am a neighbor to a 58-year-old woman who has early onset alzheimers diagnosed 4-5 years ago). Her husband is a long-distance trucker who is gone for at least a week at a time and has no inclination to retire anytime soon. There is a nurse that comes to give her meds at 8 am and makes her breakfast, a home health care worker who comes at noon to put her lunch in the microwave and does the same at 4:30 for supper both times staying 10 minutes or less. So when the husband is gone, and she is by herself, she comes to my house when things go wrong. She is very much into a routine (and I know that is important) but when the TV service was off all day Sunday, she came over every 15 min to see if the tv is working yet. I have had to lock my doors so I can use the toilet, because she just walks in without ringing doorbell. Once she surprised me in bed (my husband had left early for work and not locked the door). I am glad that she has my house as a safe place when husband is on the road, but how much am I obligated to care for her? She often walks with me and my walking partner but does not say a word the entire hour; she often comes over very anxious and I can calm her down. The husband is not computer literate, so I cannot direct him to a website for help... I am unsure as to my involvement. I helped the husband find a local woman who comes to stay with her for 3-5 days a week, but she is not always available, and cannot be there 24/7, although she is very helpful. I am working from home since Covid, and am boss of my own time, but this weekend I am exhausted with continually having to deal with her and need to catch up on my own work. Not sure what my responsibilities are, as the husband is in denial, the adult son who lives half an hour a way wants dad to get her into an Intermediate care facility, but the husband says because of her attachment to her dog, and smoking, he doesn't want her to leave her home. While I have the capacity to deal with all her issues, I am not sure I should be. Any advice?
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I am a neighbor to a 58-year-old woman who has early onset alzheimers diagnosed 4-5 years ago). Her husband is a long-distance trucker who is gone for at least a week at a time and has no inclination to retire anytime soon. There is a nurse that comes to give her meds at 8 am and makes her breakfast, a home health care worker who comes at noon to put her lunch in the microwave and does the same at 4:30 for supper both times staying 10 minutes or less. So when the husband is gone, and she is by herself, she comes to my house when things go wrong. She is very much into a routine (and I know that is important) but when the TV service was off all day Sunday, she came over every 15 min to see if the tv is working yet. I have had to lock my doors so I can use the toilet, because she just walks in without ringing doorbell. Once she surprised me in bed (my husband had left early for work and not locked the door). I am glad that she has my house as a safe place when husband is on the road, but how much am I obligated to care for her? She often walks with me and my walking partner but does not say a word the entire hour; she often comes over very anxious and I can calm her down. The husband is not computer literate, so I cannot direct him to a website for help... I am unsure as to my involvement. I helped the husband find a local woman who comes to stay with her for 3-5 days a week, but she is not always available, and cannot be there 24/7, although she is very helpful. I am working from home since Covid, and am boss of my own time, but this weekend I am exhausted with continually having to deal with her and need to catch up on my own work. Not sure what my responsibilities are, as the husband is in denial, the adult son who lives half an hour a way wants dad to get her into an Intermediate care facility, but the husband says because of her attachment to her dog, and smoking, he doesn't want her to leave her home. While I have the capacity to deal with all her issues, I am not sure I should be. Any advice?
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Reno Anderson
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I think I am burned-out. I have been caring for my mother for over 10 years (she is 91 now). My mother is aggressive and mean (has always been that way), but now that she needs assistance it is terrible. If I suggest a bath, it is as if I declared war, don't try clipping toenails or fingernails, or cutting hair. She does let me clean her up after toileting and change her clothing. It is a cold war here and if either of us says a word it ends in angry, hurtful comments from her. I have bitten my tongue until I could scream. Responding in a rational tone only makes it worse so I say nothing. She does not act so with others but I am her only caretaker...no one else can or is willing. I live in the woods and there are no respite or aid workers out here. Have checked all the resources. About ready to put her in a home but then she has her dementia spells and doesn't know where she is and is afraid. I hate to think of her at a home, alone during those times. I am really tired. Words of wisdom?????
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Deborah Cox
You are, indeed, ready to burn out. What’s your Plan B if (or when) you collapse? Who will care for Mom then? One of you is headed for a nursing home. Right now, that’s for you to decide. Believe me, I say this from empathy for your situation, AND, esp...from experience. As a wise friend asked me, “Do I need to write you a permission slip to get help for you?”
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Leslie Menges
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Leslie Menges
Thank you for the advice! I hear you loud and clear and have begun steps for a potential Plan B. (and yes, I did need a permission slip to proceed 😔)
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Deborah Cox
So happy to hear this. Good for you and good for your mum! You’ll see!
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My mom lives with me so I am a 24/7 caregiver. I have had her since March 2020. When she came she could walk with her walker. She lost all mobility Nov 9 2020 plus she is incontinent plus dementia has gotten much worse. Every time I think of putting her in a nursing home I can't do it. I am 73 and wish I was stronger. The incontinence really gets to me. She is in a hospital bed in living room so she is not stuck in the bedroom. I have been reading these posts and they give me encouragement.
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Extremely helpful. Thanks for your help for caregivers issues. I was a caregiver for several years and I am now in early stages of dementia. Reading caregivers problems I can only see what many of my client were going through. I only hope I can retain that. Again THANKS.
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My husband has had dementia. Here are a few things I’ve discovered that have worked for me over the last several years. (First of all, full disclosure - we have had a wonderful, trusting relationship for 58 years. That helps in so many ways.)
1. Respect him as an adult. I treat him respectfully and listen to his concerns. (They’re real to him, even if they’re not true.) I try to understand what he’s really worried about, instead of what he thinks has happened. At one point he was upset because he thought I was paying attention to another man. (Totally ridiculous!) I told him there was nobody who could come within a thousand miles of comparison to him. I chose him the first time and I would do it again. That satisfied him. Another time he was sure we had another home and he wanted to go home. (We only have one.) He became very upset that I didn’t want to go home. So I told him I would drive him wherever he wanted me to take him. As soon as we got in the car, he was happy. He wanted me to take him to get a coke. That broke the spell. He was fine after that.
2. Treat him like a child.
a. Give him information he asks for, but don’t volunteer more than necessary. More information leads to more questions, etc. I always tell him the truth, no matter how difficult it is.b. Give information only shortly before it’s needed. Days are confusing and fear of forgetting something makes it stressful.
c. Only offer two choices, not multitudes. Decision-making is difficult for him.
d. When behavior is irritating, distract when you can. Watch a movie, read a book aloud together.
e. Give clear instructions. Sometimes he doesn’t do what is necessary because he can’t remember multiple things at once. “Honey, why don’t you pull your dish closer so you don’t spill it.”3. Relax and laugh a little - not at the person, but at the situation. My husband often remembers (after he’s asked me what today is for the 15th time) that he’s asked me before. I just laugh and say, “That’s ok. You’ve just got a whacked-out calendar.” The other day when he lost bladder control, I told him, “Don’t worry about it. When we get older, our bodies just don’t obey us like they used to!” He was so appreciative that I understood.
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I am knew and i believe my husband has dementia. He will not gety tested for it but his symptoms are all there. Personality change and mood issues and bathroom issues as well as other ones. He refused to sign hippa so our doctor cannot discuss anything with me and this has caused an issue. We have the same doctor so that really makes it hard. I mostly walk around the house on eggshells as i never know what will set him off. I have read the book the 36 hour day and it does help but no one else will listen to me.
