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KevinKevin1, you don't have to agree with me, I don't ask you to because I don't necessarily agree with everyone on here either depending on the situation. However, the problem is with situations where people must live in restraints. This is where people tend to draw the line and if you're only going to tie up someone living with you, they may just as well be in a facility that can take care of them. I strongly agree with someone on this thread who said that the person being tied up and restrained should be able to live without being restrained and they should feel safe, I strongly agree with that person and anyone else who agrees with them.
Many years ago I heard something took place well restraints were no longer allowed to be used on patients. I didn't get the whole gist of the story, but this was in Ohio. I recall right around that time that nursing homes even had to remove side rails from the beds since they were considered another type of restraint. Since restraints were outlawed long ago, unfortunately so were side rails on nursing home beds as well as the beds in the group homes. I don't know how many states outlawed restraints, but I think something was going on that got bad enough for restraints to be outlawed, including bed rails. I don't know to what extent the law reached and what all of the restrictions were, but again, something was obviously going on that triggered that specific law to be so strict or this long would've never been made.
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Is she on an anti-anxiety med? She needs something that will allow her to be quiet and sleep. Seek out a psychiatrist.
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Oh and another thing Kevin, I didn't come here to fight with anyone but just to share what I can from my own experience and what I know. This site is no place for attacking anyone or discrediting anyone's experiences because you have no idea what any of us has been through. We all share what we know. You don't know that I haven't done my part to care for someone with dementia or Alzheimer's. You don't know that because I have done my part and did the best I possibly could. Not everyone is able to take on the full responsibility, some people can only do a little but even a little is better than nothing. If I didn't have experience somewhere, I wouldn't be able to share what I know.

Also for anyone who sees the comment about where "a perfect world" was mentioned, remember I'm referring to what goes on in Ohio. Remember, I live here and I know what goes on around here and how things are commonly handled with our elders, so there's no need to discredit what I know goes on around here. I know there are similar ways of doing stuff in other states, and when someone can't afford a facility, Medicaid is there to cover it. Over the years I've lived here, I've seen too many people go into a nursing home to not know how things are around here.
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EllerySir - What a tender but sad picture of my future. You have learned a lot. I wish you the best.
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1Rarefind: Just wanted to say you rock!
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1Rarefind: I was not insulting your views. I never commented about restraints. I don't even like restraints. I commented on your views about everybody needing to get on Medicaid so they could get into a facility and the fact that many people who do have very little $ as still not eligible for Medicaid. I also made the comment that one does not need to be put into al or nh to be safe. Many people keep their elderly loved ones home in a safe environment also. This post allows people to share their opinions and experiences. Just as our opinions may differ based on subject matter, it was not meant "to discredit, insult or attack" in any way. If I have given you that impression, then I am truly sorry. We are all supposed to be here for each other; helping and supporting because life just isn't always fair.
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I am caring for a stage 6 out of 7 elderly grandma with severe dementia. Every day, every time she sleeps is a new adventure. When she wakes up, I never know what mood she will be in or what her abilities will be making caring for her a challenge.

So far I am lucky she is able to most of the time make it to the bathroom with a minimal accident although at times she pees on the floor in the bathroom or has wet her depend. She had her first poop accident the other day in the bathroom which was a royal mess. I have not perfected the art of dealing with a poop accident without making a mess yet. I'm sure I will eventually.

She is not restrained. I have a baby monitor on her. With the baby monitors, I can hear any coughing she does, any movements she makes and if she happens to call out which at night she often does, I can hear her. I'm a light sleeper so it works really well. I also unfortunately hear her when she's talking to dead people, when she's dreaming and talking to the people in her sleep and her snoring but I most of the time she gets a sound sleep in the early mornings allowing me to catch my much needed 2-3 hour chunks of sleep a night.

When my mom was alive right after she took a fall two years ago and broke her neck, we tried a bed alarm. The only thing that did was make it so she crinkled keeping herself away at night and alerted us after she was already up and out of the bed making it pointless. My mom and I tried it again when we moved her to a chair since she was having trouble getting out of the hospital bed alone but again it was mostly alerting us after she was already up. Instead we installed baby monitors to every chair in the house that she sits on. There is one in the living room, in her bedroom, even in the bathroom although that one we have a speaking only one where she yells, "Help me!" to alert us she's done. I must admit we removed the toilet paper in that bathroom so that she would call out for help since we needed to help her with wiping. Now she sometimes will forget she even needs toilet paper and to call out so I sit at the table which we put right outside the bathroom for that very reason.

Eating, sometimes she feeds herself, more often than not lately, I have to feed her. She is just too tired to pick up the spoon and when she does, sometimes she is shaking too bad to even get the food to her mouth. Sometimes she'll start the process of eating or finish it if I get a phone call or have to run away for a minute. It depends on her mood, her steadiness and how much she likes the food I think. I am blessed so far that she doesn't choke on her food too often. She does while sleeping stop breathing sometimes. I have so far been able to hear the telltale sign of a draw back of salvia that causes the choking without breathing. My dad on the other hand was next to her and didn't recognize it. Luckily I was in the kitchen doing dishes and hear it and came running.

Grandma does not know who I am 98% of the time. The small 2% is what I'm living for right now. She does not recognize any one other than me although she still will ask for my mom by name. Sometimes she calls her by her sister's name though when she asks but usually it's a coherant, "Did Carol go to bed?", "Where is Carol?" "Is Carol at work?" or sometimes she'll just call out to my mom in her sleep. Sometimes I'll hear her having a conversation with her at night. At first I was jealous she got to talk to mom but after a while I have heard her talk to all her sisters, my mom, and her dead husband. I think she actually hears their reply. Normally the discussion is about going to the bathroom. She is obsessed with the bathroom.

She can't dress herself. Hates baths. She has a helper who comes in 4 hours a day on the weekdays to shower her, sit with her, feed her and make sure she takes her pills. Sometimes she smiles at the lady but more often than not she doesn't want me to be out of her sight even when the lady is here (making it really hard to pack but that's almost done now. Only 3 days left until the stuff is relocated to our new house in Maine!). She does not like me though but sometimes I'll get a smile. The smile is what I want to see everyday but I understand soon she will not be able to do that. Sometimes she is sweet and loving and other times I’m jumping out of the way of a slap or kick that she does when upset about something. That is her way of telling me something going on isn’t to her liking.

The progression can be really gradually. Sometimes you won't even notice the change until you sit down and realize you are feeding her almost every meal every day and placing the pills in her mouth followed by lifting the cup for her to swallow it down. Other changes you will realize such as the shaking and leg buckling to walk and hand shaking while touching things. I wish you luck. It's not easy.
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Restraints are torture. They should only be used in extreme emergent situations, temporarily, under constant supervision and for no more than two hours at a time. After two hours the person needs to be released, allowed to move around with proper assistance, offered food and drink and toileting.
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I just wanted to say thst a caregiver is a caregiver, regardless of the situation, caring for some from a distance, in a facility, at home, your home or another family members home. It doesn't matter, they are all different but basically the same. Some people were born caregivers, others are not. Some people have more responsibilities other then the patient and some of not. Some people have tried to keep their loved ones home until they were no longer able to do so. Whether physically or mentally they had to make a very heart wrenching decision to place their loved ones. I think we can have discussions without downing others for the decisions they made. We don't know the circumstances and it is not our place to judge. (I know I have been guilty of that) We are all here seeking help and suggestions or sharing our experiences. This is a great forum and I want to thank everyone for trying to help others with suggestions and ideas. This makes it easier for the next person going through their journey with their ekderly loved ones.
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littlemisskitty,

Something you describe sounds very familiar. I'm glad I learned about the dying process and life's and stages otherwise I would've never recognized the signs. You mentioned your loved one speaking to dead people who have long since passed on. My elderly friend who since died January 3, 2016 started talking in his sleep. One of the people with whom he was speaking was his deceased wife. One of the signs of oncoming death is when someone starts speaking to people who aren't really there. He was also sleeping much more than he used to. I was kind of surprised he suddenly started sleeping all day as well as all night. He would be up-and-down throughout the day but sometimes also throughout the night. He had asthma and COPD. He had to frequently use a nebulizer due to his frequent attacks. Between this and bathroom breaks among a few other things, he was always in and out of sleep, but he slept more than he used to. In his sleep is where he was talking with people who weren't really there, one of them was his wife. It seems like he would call off in the distance to her like he could see her from a distance. He kept saying he wanted to go home, and he would call out for someone to come get him. All I could do is listen and observe, there was nothing else I could do. I could only imagine being in your sleep and seeing a deceased loved one from afar and calling out to them. From what I was picking up, I think he was dreaming about being in a place because at times he would have to raise his voice to call out to people who weren't really there. I'm not sure exactly what my friend saw in those dreams, but I'm sure it must've been very similar to earthly life where people mingle. I'm not sure what his wife was doing in any of those dreams, but he obviously saw her and was calling out to her an awful lot. I knew this was not a hallucination, not at all. In fact, when a person is coming to an end to this life, I believe there's a strong possibility their spirits are probably becoming more in tune to the spirit world and less in tune to the physical because at the end of life they are detaching from this life as they prepare for the spiritual life. When you've never witnessed an end-of-life process before, it can come as something new and sometimes even rather shocking. You can only hope that you're not the one to walk in and find the person, this can be even more shocking, scary, and even traumatizing for some people. I think this is probably why some people prefer not to attend funerals. That way, they can save themselves the extra sadness by just remembering someone as they were when they were living.
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The way she is restrained is for her best benefit. You personally may not agree with restrains, I respect your opinion and your concern. Though out paths are similar, they are not the same. Mutual respect, please. She is carried for greatly, gently and kindly. Restrains are only administered at night, under supervision of her caring doctor. Not, abusive or harmful. It is the families utmost concern to care for this precious woman. Please, don't judge us to harshly.
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Mama period, you are right and I apologize for not being able to get past the restraints. My mom had Lewy body dementia with parkinsons. The parkinsons diagnosis came into the picture at the suggestion of the physical therapist who picked up on symptoms that we missed. My mom could still take care of herself but she was unable to do the cooking and cleaning. Slowly we noticed that mom was not eating too good because she would start shaking and would just give up. Slowly, one by one her motor skills disappeared. Mom could not walk but could stand if she was holding onto a grab bar for toileting and for transfers from bed to wheelchair to recliner, etc. we had to shower mom, dress her and feed her. My mom was the most pleasant lovely person you have ever met. However, I know this is not the same for everyone. Thinking back I can't even remember how long we did this. I know for sure it was 4 years because that is how long we had the doctor who did homebound visits only, but I think about a year longer then that. My mom went thru problems with an overactive bladder and wanting to get out of bed every half hour to hour at night. We found an OAB med that worked and gave her seroquel to help her sleep. However she then became so groggy in the morning that it was hard to wash and dress her and she would sleep all morning. At this point the neurogist added a very small dose of ritilan to help her stay awake during the day. Mom would see people in her room during the night after much trial and error we had a routine. Soft music with no words, noise machine and kept a small light on all night. Never told mom what she saw was no there, this upset her more. my sister and I took turns spending the night with mom so dad could get rest and be able to do part of the days without help. This slowly changed. Had someone for a few hours in the afternoon then I would go over and do the rest of the day. Slowly progressed that i was there 24/7. I noticed mom did better when only the people she saw daily were there. Holidays when the whole family came over were wat too much for mom. I suggested that we all take turns and come different times by that did not work for everyone. Needless to say, mom would have a bad night after each mass visit. Slowly progressed that I would have to take her upstairs in the middle of the day to get her away from all the stimulation. My mom was not at the end of her dementia journey when she had an old aneurism in her head that started to bleed and sadly she past about two weeks later at home with her family around her. I know from reading in this site that all dementia diagnosis are not the same. If you know what type of dementia your mom has it may be more helpful to search that in the search bar above. You may find more specific information that way. Thru this journey my moms neurologist, who specialized in dementia, was the primary medical caregiver. He was the one who with add or delete medications based upon the symptoms we explained to him. About the last 3 years, mom really did not talk. She could give you one work answers to simple questions like tea or juice. Hope you find some help in this answer. If you have more specific questions to ask, please don't hesitate to post. Best wishes for your mom and family.
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Gawd, what is going on with this world....
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my nephews mother had sever alzheimers/dementia by the time she was 50! she use to pace the whole house constantly and was very stressed. the boys were in their early 20's when this was happening and cared for their mother!! i was horrified that no one was around until she was way out of control...and in florida...they could not find help? anyway...they wound up making her room into a padded room...putting up cushions on walls, removing furniture and anything sharp she could hurt herself. at the end she had a seizure and fell and hit her head on the window sill and died! how about padding her room and putting that mattress on the floor!!
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I feel like I need to explain myself. I was not agreeing with the whole restraint issue, but the poster is correct, we are not here to judge. I was answering her question as to what to expect in the future. I shared my story with my mom in hope that i would somehow help. Although many of us would not use restraints and you can get past that and answer the question, we may be able to give her some help. If you are not comfortable in doing so, ignore this post. Wishing all a good day.
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A thought regarding the prevention of an elderly person from falling out of bed: is simply putting a mattress on the floor an option? If the person isn't very heavy, having the box springs is probably unnecessary (I've slept that way for years), and this would allow the person to sleep within a foot or so from the floor. In addition, the bed frame serves essentially no purpose regarding sleeping comfort. Pads on the side, as Caregiverhelp11 mentioned, would provide an additional level of protection.
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