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Post by imkat on Feb 3, 2023 4:02:17 GMT
For those who have had parents with dementia, at what point was it determined that they could no longer live in their own homes? Was it a crisis situation or specific signs or milestones? At what point did you know?
When they could no longer live independently, how was it decided whether they go to assisted living or to your home (or brother/sister)?
For those with parents living with them, what type of arrangement do you have? Do you do have an in-home caregiver? What other support do you have from family? Do you regret taking it on?
For those whose parents went to assisted living, do you feel any guilt for not taking them into your home?
EDITED: Thanks for sharing your stories. It's been very helpful to read your replies, however painful. For additional background:
My father is very sweet but his germaphobia makes him critical of efforts to help him. We are in a transition period with caregivers now coming 2h/d for 3d/w. I visit 3 or 4 days a week, and my sibling visits 1 or 2 days a week. He is somewhat stabilized mentally, but has started to decline physically (fatigued, won't eat). We can continue to add more in-home care, but I think within the next year or so, we will have to consider a full-time care situation.
My daughter, who worked in a memory care facility during college, thinks he would get better care living with me. She says, Isn't that what you would want me for do you? Other family members ask if he is living with me or will be living with me. Our current arrangement gives me a lot of anxiety and sadness, and I can't imagine doing it 24/7, even if there is a part time caregiver and occasional limited help from family.
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Post by Delta Dawn on Feb 3, 2023 4:21:03 GMT
For us the hospitalist or geriatrician came to us and said we couldn’t take Mum home. She required way too much care than we could provide. The staff on Seniors Psych asked to keep her there because they loved her. That’s exactly how it went. The doctor told us. That made us ready.
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Post by volunteergirl on Feb 3, 2023 4:33:20 GMT
After my grandfather passed away, my grandmother deteriorated quickly. The turning point was when she left the stove on, wandered outside, and started looking for my grandfather. A neighbor got her in the house and called my aunt. The family decided the assisted living up the street was necessary. It was obvious that she was a danger to herself.
She was too far gone for home care. Honestly, and I don’t mean this to sound flippant, but there was no consideration about any of her four kids taking her in. They had all nursed family members through serious illnesses so they knew their own limitations. They knew they were not skilled enough to provide all she needed. There was no guilt because they knew the job was beyond them.
My other grandmother, who did not have dementia, did stay in her home with in-home caregivers. The problem with that is the ongoing stress. If one caregiver did not show up, or was late, or left early, or quit, my mom had to do it until she could find someone else. It was like being on call 24/7. It was very difficult because she felt like she couldn’t do her own appointments because of the uncertainty.
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Post by epeanymous on Feb 3, 2023 4:44:27 GMT
My MIL has dementia related to Parkinson's. She and my FIL have in-home care part-time. It isn't enough IMO--she falls daily, usually multiple times--but that is where we are right now. FIL is able-bodied and not that old (75).
After dealing with my father, I did have my husband sit down with his parents and work out a plan for if FIL dies or becomes debilitated. We will not take her in, nor will BIL -- she would go to a facility that could care for her.
I always thought I would take in my mother but after helping with my father I know for sure I could not do it.
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amom23
Drama Llama
Posts: 5,408
Jun 27, 2014 12:39:18 GMT
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Post by amom23 on Feb 3, 2023 4:44:50 GMT
My mom caused a car accident which snowballed into her moving into an assisted living apartment near me. Almost 7 months later mom had to move into the adjacent nursing home. Her dementia has progressed very quickly. Looking back the signs were there, but were easy to dismiss or we just plain didn't see them at the time.
I do feel bad that mom is struggling with dementia and has to live in a nursing home. I also know I am not able to give her the care she needs. Mom is close by in a good facility. My siblings are out of state so mom is basically my responsibility.
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Chinagirl828
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Melbourne, Australia
Posts: 6,650
Jun 28, 2014 6:28:53 GMT
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Post by Chinagirl828 on Feb 3, 2023 6:01:03 GMT
My grandfather shielded the family from the worst of my grandmother's dementia but after he passed away, she deteriorated further. She had in home care for a while, but she was prone to wandering. Thankfully she had good neighbours who would call us if they saw her walking up the street or had been able to intercept her and get her to come in for a cup of tea. It reached a point where the calls were very frequent, and it was obvious she could no longer stay at home. When I think back now, she really should have been in aged care sooner than she was.
I don't know if my parents felt guilt for not taking her in, but my Mum has a nursing background and works in aged care, so she would have had very realistic expectations about what they could manage and the level of care my grandmother required.
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Post by Delta Dawn on Feb 3, 2023 6:04:16 GMT
Also, 911 knew me by name because Mum wanted to run away and we needed police help to keep her safe. Oh wow that was a lot. The constable said to me, “you did the right thing calling us”. That sure helped.
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dawnnikol
Prolific Pea
'A life without books is a life not lived.' Jay Kristoff
Posts: 8,425
Sept 21, 2015 18:39:25 GMT
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Post by dawnnikol on Feb 3, 2023 12:26:13 GMT
For those who have had parents with dementia, at what point was it determined that they could no longer live in their own homes? Was it a crisis situation or specific signs or milestones? At what point did you know? My Grandma is 92, but was in her late 80s when she got into her final car wreck caused by her, no doubt. She then had a stroke and it was determined by the sister who lived closest to her (which was still not even in the same state) that she needed to go to a home. My Dad refused and because he was already in the process of moving to Missouri, had the sister and her daughter fly her to Missouri to drop her off. She also has dementia and limited mobility. The only saving grace is she's super tiny (always has been) and can be helped easier than if she was a larger person. Needless to say, my 60something year old father just retired from nursing and is staying home to take care of her. He has aged considerably from it and dragged me with him, until I finally set more firm boundaries. He refuses to put her in a home, and I have a lot of anger over it because he thinks it'd kill her to go into a home, but I doubt she's very happy now. I have worked in nursing homes and visited others that my Dad was working at and I understand people's hesitancy. I wish our country were more caring for our elderly, but I'd still go to a home than have my kids take care of me.
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froggyscraps
Full Member
Posts: 171
Jun 26, 2014 0:43:39 GMT
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Post by froggyscraps on Feb 3, 2023 12:31:01 GMT
I'm so sorry you're in this difficult situation. It's not easy. To answer, yes, I felt tremendous guilt putting our father into a nursing facility but there was no way we could give him the 24/7 care he needed. He didn't want to listen to his family telling him to take his meds, etc but would happily comply with nursing staff for the most part. I wish you best of luck with this.
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Post by lisae on Feb 3, 2023 12:35:19 GMT
My mother was managing at home but I could see she was going to need someone with her later in the day probably in the next few months. Then she fell and broke her hip. Her Alzheimer's disease became much worse. I hired caregivers for her for when she came home from rehab but it did not work. MOther was afraid of 'strangers in her house' and she ran away, repeatedly, leaving her walker behind and crossing the road usually barefoot. She also saw my husband, her best buddy, as a stranger at times, particularly late in the day. So, she had to move into Assisted LIving memory care where there were people trained to deal with her situation and where she could not get out in the street.
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Post by Bridget in MD on Feb 3, 2023 12:58:41 GMT
My FIL is 92 and my MIL is 83. They are both unable to live on their own, but insisted on it. Refused to even discuss possible solutions or get on lists, yet expected my DH and his sister to continue to manage their care. My DH had to back out - he did not have a good relationship with his parents, and all this time up at his childhood home caused him a lot of stress, and made him ill. Since My SIL has POA and executor of their estate, and she and my DH were taking turns going up on weekends to take care of the house and them, DH set up in home care, and stopped going up He hoped they would see how much they needed care and listen to reason, but they just wouldn't, even when it was even increased to daily, 9-5. my MIL fell and had to go into a hospital. My SIL and DH would have to take turns staying with FIL bc the daily care ended at 5, there was no 24/7 service available. People were starting to pray on them - one person charged $10K to resurface their driveway and another wanted $50K for a "mice problem" - my FIL would answer the door and grant permission/sign contracts, etc, and there was NOTHING anyone could do. It was not a good solution - DH/SIL needed to work and take care of their own lives too. So my SIL found an assisted living facility near her, and while my MIL recovered in the hospital/rehab, they basically had to trick my FIL to go "get a haircut" and move him in. He immediately loved it. My MIL joined him later, I am not even sure she remembered the house she insisted she had to stay. I wondered if she remembered my FIL, bc it was a bumpy adjustment - they would fight and he actually kicked her out of bed, and bit her a couple of times. My DH does NOT feel one bit of guilt. He knows he cannot give them the care they needed, and due to their relationship, did not feel they were entitled to his love & care, or want it anyway. They are SO happy now; DH feels they should have done this earlier, so much less stress on everyone. I think SIL felt VERY guilty at first, she is the daughter who they wanted to care for them, and she felt guilty. She also basically said it was like caring for 2 dogs 2 hours away - I know that sounds awful, but there was just no quality of life for any of them. I think she sees how happy and well they are doing, and how safe they are, and she feels a lot better now. My parents supposedly have a plan, and whenever this topic comes up, I always think, I really need to talk to them about it...
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Post by littlemama on Feb 3, 2023 13:02:20 GMT
I rarely tell this story, because it is difficult.
My dh's stepdad's mom was 95,still living on her own with family checking on her daily and making sure she was eating. She had not been diagnosed with dementia- part of this was because, well, have you ever tried to get a 95 year old Italian woman to do something she doesnt want to do? She did not want to go to the Dr. She did not want to leave her home. She had lived with one of her other children for a few weeks (i cant remember why- i think a health issue), but as soon as she was able, she wanted to go back home.
The family knew that her memory had declined, but she was 95 and able to live on her own and function. They did not feel that her memory issues rose to the level of dementia.
A few years ago, we had an extreme cold snap- extreme even for where we live. It lasted for over a week.
One night during this cold snap, her daughter had come over to take care of anything she needed and got her mom ready for bed. When the daughter left, Nona was going to bed. Around 2am, Nona went and knocked on her neighbor's door and tried to give him cookies for the children (i dont think he had young kids). The neighbor took her back home and waited until she was back inside and had locked the door. He did not call her daughter (I am not blaming the neighbor for any of this. I imagine he would have talked to her the next day and since he got her home, felt that she was safe).
The next morning, she was found dead near the local elementary school. My thought was that she may have thought she needed to go pick up her children from school, as that was the school they had attended. She died of hypothermia/exposure. (The news media reportes so many untrue things about her death that it caused a lot more pain for the family)
So, if you know that your family member has dementia, please be sure to get them into a locked facility once they progress past the point where someone can adequately supervise them 24 hours a day.
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kay2rn
Junior Member
Posts: 67
Location: Wisconsin
Jun 26, 2014 2:52:20 GMT
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Post by kay2rn on Feb 3, 2023 14:14:15 GMT
My 88 y/o mother was calling the police on a regular basis to report a “kid” was watching TV, smoking cigarettes and eating her food at night. She was not able to catch him in the act though. (There was no kid). She was also hiding things…her keys, wedding rings, etc and calling us in a panic because they were “stolen.”
My brother lived a mile away and checked on her twice a day during the week. He also managed her finances and yard work. After she went to the garage and said the car in the garage wasn’t hers, he disabled her car battery and was waiting for parts so he could “fix” it. For 9 months, I drove 2 hours to stay with her on weekends to give my brother a break. We went for car rides, hiking to see local waterfalls, shopping and out to eat.
She was very active into her late 80’s. For her 75th birthday, we bought her a new bike with coaster brakes. She rode 5-8 miles once or twice a day on a local paved bike path. Often with myself or my brothers wife, sometimes alone. She also cross country skied several times a week all winter. After calling the police twice in one night, my brother had enough!
Putting her in a dementia unit was the best thing for her. I visited often and could see how much the staff loved the residents. She thought she was in a motel. The pandemic was hard because the facility was on lock-down. Window visits were less than ideal. She was no longer able to talk on the phone…didn’t know which end to talk into. She no longer recognized us. They gave her a “baby” (doll) which was a great source of comfort.
We were all working and unable to take her into our homes. We also knew that she required care 24/7 that we were not able to provide. It was exhausting!
Although the nursing home dementia unit was very expensive, (we were cash pay), we knew she was in a safe place with people who loved her. She though it was “free.”
Yes, there were things that were less than ideal (urine smells, short staffing, wear and tear on clothing due to harsh laundry they use).
We have no regrets. Once the facility was no longer on lock down, we visited often, walked with her outside and took her on outings until it became too difficult for her to get in and out of the car. I took a photo nearly every day I visited and sent it to my brothers. At the end, it may have been just a photo of her hands holding her “baby,” the quilt on her bed or her Easter bonnet that she loved to wear.
In her last days, staff frequently shared stories of things she said or did. When they repositioned her, they took a moment to hold her hand, tell her they loved her or gave her a quick kiss on her forehead. I saw many staff with tears in their eyes.
I wish you the best with your decision.
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Post by workingclassdog on Feb 3, 2023 14:47:09 GMT
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Post by lily on Feb 3, 2023 14:51:58 GMT
From our experience with my mother, when they get to the point of not being able to feed them selves and use the bathroom appropriately it's time for skilled care.
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Post by calgaryscrapper on Feb 3, 2023 16:48:22 GMT
A neighbour’s across our lanes Mom spoke very little English. One of my neighbours found her wondering down the middle of our street one day, returned her home and let her adult son that lived with her know what happened. Another day she was wandering the lane not knowing where to go and I returned her home and advised her Son. He had to turn off the breaker to the stove before going to work so she wouldn’t turn it on. I suggested he try to put a camera motion detector on the door she goes out. Eventually he placed her in a care hom.
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Post by lisae on Feb 3, 2023 16:54:31 GMT
littlemama Thank you for sharing that story. I'm sure that was so difficult on everyone. It helps those of us who have had to make these tough decisions and always wonder "Could we have made it work at home?" There is nothing easy about this and no one has a crystal ball. It sounds like Nona was a bit like my mother, really good at hiding how bad things were when she was living alone. My sister-in-law almost died of exposure when she went out on the enclosed back porch in 20 degree weather to check and be sure the door was locked. She had just told her son on the phone she was going to bed. He found her the next morning. Her body temp was in the 70's but she pulled through.
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Post by busy on Feb 3, 2023 16:59:53 GMT
There are no circumstances under which I’d have my parents or in-laws with dementia live with us. It requires special, professional care IMO.
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RosieKat
Drama Llama
PeaJect #12
Posts: 5,538
Jun 25, 2014 19:28:04 GMT
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Post by RosieKat on Feb 3, 2023 17:06:18 GMT
From what I've seen with friends, I think the big determination is whether the person is combative or compliant. If you have someone who is compliant and "just" has memory issues with the occasional argument, they could live with someone else. A combative angry person ended up going to some sort of assisted living pretty soon.
The only situation I'm very familiar with involving taking someone out of their home was one where the person kept doing unsafe things, like boiling a pot on the stove till it was dry and starting fires, a few times. Unfortunately in that case, they had to sort of trick her to sign the paperpwork to sell the house and move into the assisted living (or nursing home, or whatever specifically it was), and the parties involved still feel bad about that to this day. However, it was a necessary evil and I know they did it for the benefit and need of the person with dementia.
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Post by Dixie Lou on Feb 3, 2023 17:54:24 GMT
For me, my dad moved in with me when he separated from his wife in February 2017. He just needed a place to stay for a few days and that turned into five years. His dementia started showing up more that summer when he would get in his car to go somewhere familiar and be gone all day because he couldn't find his way back. That's when my brother took the car back (it was his, not my dad's) and I started taking my dad to church, the store and all of his appointments.
We got a part time caregiver for him in July 2017 because I'm a teacher and had to go back to work. She basically cooked for him, cleaned up after him, took him places and just be his friend. That worked for several years. Christmas 2021 my dad got physically ill and never was the same. He was in and out of the hospital for various reasons. He was combative and argumentative and wanted to go home. He would leave the house and once he hitch-hiked to Walmart to buy a deck of cards. Usually though he was somewhere in the neighborhood. I bought an indoor lock with a key to keep him inside and that made him very mad. He would misunderstand something that was being said (in another room that did not even concern him) and throw a fit. He would "chase" his care giver out the back door when it was time for her to go home. He accused me of stealing his stuff (things out of the refrigerator, money from his wallet, his shoes, anything.) I called 911 many times because he would fall and he was too heavy and his body hurt when I tried to help him up. They were so so nice about it.
It was very hard. He turned into almost a 24 hour job. There are some things that I feel guilty about but I did my best. I did not want him to go into a facility because he hated the hospital setting so much. My brother and I discussed it often but we were always able to make do the way things were.
His part time caregiver had quickly become a family member and she was so much help. She could get him to do things that I couldn't. For example, one even he wanted a taxi to come get him and take him home so he walked out the front door. It was cold but he wouldn't come back in. He kept insisting I call a taxi. I got my brother on the phone and he couldn't talk him into coming back inside. So the caregiver came back over and told him she would take him home in the morning. He came inside and let her put him to bed. We learned as time went on how to handle things like that. Sometimes my brother could do it and sometimes the caregiver could and sometimes I could. It depended on who he thought I was at the time.
All of this makes me so sad!
We got him on hospice so he got care that way and it helped the caregiver out so much. By now she was full time. We tried to get another caregiver but nothing ever worked out.
It was decided that he needed a hospital bed so they set that up in the living room. Once he got in that bed, he never got out. He passed away 3 weeks later.
Having my dad in my home was hard, but it was best for my family. I certainly understand why it wouldn't work for others.
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moodyblue
Drama Llama
Posts: 6,253
Location: Western Illinois
Site Supporter
Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Feb 3, 2023 19:14:43 GMT
I don’t know the exact statistics, but there are too many elderly people being cared for by another, often elderly, family member, and the caregiver ends up dying or becoming disabled first. Then you have a double whammy of changes in caregiver and living conditions for the older person.
When my grandmother, who was in pretty decent shape, needed help with my grandfather, there was a woman who came in for four hours a day. When that wasn’t enough, it was time to move my grandfather to a nursing home. Grandma moved into a small apartment in the same facility, so she could visit him every day but not take physical care of him. It was best for both of them.
My grandfather didn’t wander or do dangerous things; he was very gentle and cooperative, although often just “absent” in interactions. I can’t imagine trying to care for a parent or grandparent if they are at all combative, need 24-hour supervision, cannot eat, shower, or toilet by themselves, do accidentally dangerous things like leaving the stove on, etc.
We were lucky in that my parents never expected or wanted to live with any of us. My father was on oxygen for the last couple months but able to be up around the house. My mom, several years later, decided to move to assisted living as she knew she was able to do less and less; since my brother lived on the same farm, right across the driveway, and checked on her multiple times a day, she knew that if she died at home he would most likely be the one to find her. She didn’t want that for him, or any guilt about not having been there.
Sometimes you have to make the hard decisions - and many times that is to use the nursing home or memory care or assisted living option. And it’s not necessarily being selfish; it can be the realistic choice. If you are not able to give them the level of care they need, place them where they can get that care.
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Post by littlemama on Feb 3, 2023 19:40:06 GMT
Thank you, everyone, for the kind words. Nona was still gardening the year before she passed away. She always put in a huge vegetable garden every year and would get PISSED if anyone tried to offer to do things for her. She was a character.
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Post by Linda on Feb 3, 2023 19:45:52 GMT
My daughter, who worked in a memory care facility during college, thinks he would get better care living with me. She says, Isn't that what you would want me for do you? Other family members ask if he is living with me or will be living with me. Our current arrangement gives me a lot of anxiety and sadness, and I can't imagine doing it 24/7, even if there is a part time caregiver and occasional limited help from family. My MIL (physical issues, no dementia) lived with us at the end of her life. She was sweet, loving, cooperative...and it was still very very hard. She did spend her last few days in a hospice facility because her physical care needs were beyond my ability (I couldn't safely lift her for instance). I have no regrets on having her move in but I don't feel I was adequately prepared for all that it would involve...and I'm a homemaker so wasn't having to juggle work as well. My mum died at home - she did have dementia alhough only recently diagnosed and much more advanced than we realised. She outright refused caregivers or the possiblity of moving in with me or my sister or to a senior care facility. She said (and had for years) that the only way we were getting her to leave the house would be feet first (meaning she wanted to die at home). We were in the process of forcing the issue when she passed. I do have regrets that we didn't realise sooner that she was dealing with dementia - she hid it well - and that she died alone (although EMS said it appeared she died instantly - she wasn't found until the next day). I've told my kids that if I need it, put me in a facility. That way they can be my kids still and not my caregivers. ((((Hugs)))) it's hard
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Post by katlaw on Feb 3, 2023 19:49:19 GMT
I am sorry you are dealing with this. It is a really hard decision to come to. There are some really helpful stories and suggestions on here. I had to stop reading them, they made me too emotional. My mom died in July 2020 and I still miss her everyday.
My one piece of advice, whatever you choose to do, do not feel guilty. Someone suggesting you care for an elderly relative with dementia in your home does not mean you have to choose that path. I had a lot of reasons why we could not care for my mom in our home: We don't have a bedroom or washroom with a bathtub or shower on the main floor of our house. We have flights of stairs she could not navigate. I work shift work and she could not be left alone. She needed medical care that was beyond me. I needed her to be somewhere safe and I did not feel like that was with me. I had so much anxiety worried about her wandering away and getting lost or falling down the stairs.
I loved my mom and wanted her to be safe and cared for and we were able to find that in a nursing home. We were lucky to find a smaller facility and the staff really seemed to care for the residents. She was happy there and always clean, dressed, well, cared for and smiling when we came to visit. We probably waited too long to move her into a nursing home from her seniors lodge but we just weren't ready until she needed to be there.
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Post by pajamamama on Feb 3, 2023 19:57:48 GMT
For me, it was after my mother passed suddenly. My Dad declined rapidly and had a severe issue with Parkinsons. He began to fall and refused to call for help with his alert button. He would just lie on the floor until someone found him. I am an only child, so no help was coming and I couldn't physically lift him for toileting, etc. The hardest part was the fact that he didn't have any dementia at that time. We were able to get him into assisted living for a few years before he was forced into a nursing home. Not by me. He had began peeing on the floors and they couldn't handle him any longer. It was difficult, because I still feel guilt because my home wasn't suited for handicapped and I didn't have the strength to help him-- he outweighed me by many pounds.
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dawnnikol
Prolific Pea
'A life without books is a life not lived.' Jay Kristoff
Posts: 8,425
Sept 21, 2015 18:39:25 GMT
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Post by dawnnikol on Feb 3, 2023 20:00:29 GMT
EDITED: Thanks for sharing your stories. It's been very helpful to read your replies, however painful. For additional background: My father is very sweet but his germaphobia makes him critical of efforts to help him. We are in a transition period with caregivers now coming 2h/d for 3d/w. I visit 3 or 4 days a week, and my sibling visits 1 or 2 days a week. He is somewhat stabilized mentally, but has started to decline physically (fatigued, won't eat). We can continue to add more in-home care, but I think within the next year or so, we will have to consider a full-time care situation. My daughter, who worked in a memory care facility during college, thinks he would get better care living with me. She says, Isn't that what you would want me for do you? Other family members ask if he is living with me or will be living with me. Our current arrangement gives me a lot of anxiety and sadness, and I can't imagine doing it 24/7, even if there is a part time caregiver and occasional limited help from family. Honestly, I get it. We all want to take care of our family members and we obviously will do better than any stranger, right? From the experience with my Grandma living with my Dad, there is no doubt in my mind that BOTH of them would be better off if she were put in a home. The experience we have with assisted living facilities already gives us an advantage. As long as the facility isn't just a dumping ground for your family, regular check ins do wonders for the care people receive. There are so many things that you can't know will happen. Nobody knew my Grandma would take a wrong turn out of the bathroom one night and land at the bottom of the 6-7 steps and have her ribs cracked, her elbow broken, and puncture her lung. She'd get better and then get worse. He tells me all the time to just put him in a home if something happens. I have a feeling that will be sooner rather than later with the years coming off his life taking care of her because he's so damn stubborn.
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scrappinmama
Drama Llama
Posts: 5,019
Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Feb 3, 2023 20:08:18 GMT
My mother is 92, legally deaf but refuses to wearing her hearing aids and has been on dialysis for the past 3 months. She will not go into assisted living. We have a caregiver come to help out a couple times a week. Honestly, she needs to be in assisted living. Either my sister or I have to call multiple times a day to make sure she is up and ready for her transportation to dialysis, is eating, etc. Prior to going on dialysis I spoke with her doctor and dialysis social worker and told them I didn't think she was capable of following through with it. But she insisted, so here we are. In the past month I have decided to stop calling multiple times a day to remind her of things. If she isn't ready for the dialysis van, then she will have to miss dialysis. If she doesn't eat, she doesn't eat. If she doesn't take meds, she doesn't take meds. I have my hands full taking care of my autistic sons and I live 1,000 miles away. It was beginning to impact the level of care I was providing my sons. It came down to providing quality care to the 2 young people in my home, who hopefully have decades of a quality life ahead of them over someone who might have months to live. It's sad, because I love my mother and don't want her to suffer. But she refuses (or more likely incapable) of accepting her declining health.
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Post by longtimenopea on Feb 3, 2023 23:30:04 GMT
I’m an only child, don’t have any help, and when my father developed severe dementia and needed round the clock care I selected a nursing home for him. Home health and hospice doesn’t even come close to meeting the demand when a person can’t sit up without falling out of bed, feed themselves, or go to the bathroom - we got to that point within six weeks of his dementia diagnosis.
It was hard. He was mad. There was nothing else I could do. Only child, full time job, child of my own to care for too - there was NO way I could do it.
When I knew I couldn’t manage it is when I made the decision. I couldn’t make him safe enough. He kept falling and the paramedics kept coming and it was too much. He was going to break a hip or, on his unpredictably mobile days, set his apartment on fire trying to cook or wander out into the street. I didn’t have a choice.
I have zero guilt. I made that decision out of care and love and would do it exactly the same way over again.
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Post by epeanymous on Feb 3, 2023 23:38:01 GMT
For those who have had parents with dementia, at what point was it determined that they could no longer live in their own homes? Was it a crisis situation or specific signs or milestones? At what point did you know? When they could no longer live independently, how was it decided whether they go to assisted living or to your home (or brother/sister)? For those with parents living with them, what type of arrangement do you have? Do you do have an in-home caregiver? What other support do you have from family? Do you regret taking it on? For those whose parents went to assisted living, do you feel any guilt for not taking them into your home? EDITED: Thanks for sharing your stories. It's been very helpful to read your replies, however painful. For additional background: My father is very sweet but his germaphobia makes him critical of efforts to help him. We are in a transition period with caregivers now coming 2h/d for 3d/w. I visit 3 or 4 days a week, and my sibling visits 1 or 2 days a week. He is somewhat stabilized mentally, but has started to decline physically (fatigued, won't eat). We can continue to add more in-home care, but I think within the next year or so, we will have to consider a full-time care situation. My daughter, who worked in a memory care facility during college, thinks he would get better care living with me. She says, Isn't that what you would want me for do you? Other family members ask if he is living with me or will be living with me. Our current arrangement gives me a lot of anxiety and sadness, and I can't imagine doing it 24/7, even if there is a part time caregiver and occasional limited help from family. Your update made me want to respond. It is so different working in a facility and being the person who is responsible for another person (1) who is your relative (2) in your own home. Unless other people themselves want to take on the care in their own homes, I can't imagine someone else trying to persuade you (and as someone who, as I said upthread, assumed I could do this for my own mother eventually and even bought a house set up for it, two months of dealing daily with my dying father, who was not even in my home, showed me it was not possible for me. If you want to do it and feel capable of doing it, that is one thing. But I will tell you something I've talked about a lot with my therapist, which is that it was a relief when my father died. He had a couple of days in residential hospice (when it should have been clear he needed to be in supportive care) when I could visit and just enjoy the time with him, and when my mother could sleep through the night. I wish we'd spent his last months with him like that, rather than how we did.
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peaname
Pearl Clutcher
Posts: 3,390
Aug 16, 2014 23:15:53 GMT
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Post by peaname on Feb 3, 2023 23:55:57 GMT
I work in a nursing home. There is a steady stream of elders who get by on routine in a known environment and then one day a hospitalization often due to a fall leads to a functional decline and the hospital therapists determine they are not safe to go home without rehab. Post acute rehab is provided in nursing homes where the elder will be given a thorough evaluation and either discharged home with extra care or 24 hour care or in many cases with just visiting nursing and home therapy. If the elder can’t be discharged because family cannot provide the 24 hour care or cannot afford to hire such care (not covered by insurance in the US) they have to be discharged against medical advice (comes with an elder services referral to eval for abuse/neglect) or remain in the facility for long term care. With dementia any type of insult/injury means the person is not likely to return to prior level of function. I regularly hear he/she was doing fine and then the fall/flu/covid/etc set him/her back and they rarely regain it. It’s a progressive illness and it’s really sad especially for family members. And a caregiver doesn’t come with the years long relationship so mom or dad may not listen to an adult child but might be more cooperative with a caregiver. And caregivers also don’t have the same frustration that loved ones have.
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