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My husband has been under the care of hospice 11 months and shows no sign of slowing down, which is fine with me, but I struggle over the best way to care for him. After 2 years of nightmare experiences with in home caregivers a few days a week for my respite, I decided to try a memory care facility day care program 2 days a week. I love that it has activities, brain boosters, etc., although my husband sleeps most of the time and, although he seems content while he's there, he really doesn't like to go and grumbles all the way there. I feel the activity is actually improving him. If he really is dying, and who knows, do I keep trying to improve his quality of life or let him Rest In Peace? How does one know what's best? He has Parkinson's and dementia.

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I will admit I go up & down on what is better. But I also feel it's an individual's call on the choice & it can't be forced. It's probably a peace of mind thing for us caregivers.

As a caregiver to my brother with ALZ it has been a roller coaster ride. Professionals were right, his self & behavior, especially with me, would not get better or change. This saddens me because I am concerned what will happen when the "when time" is a necessity.

I have been "it" for caregiving, behavior a concern. I am always seeking & trying the right approach to assist him. I may have to use a new tactic or fib to do for him what he is now unable to do. His care takes time, patience & "an on the ball" mentality. It can be frustrating & stressful. I do realize a bad day or moment is not always his fault or anyone's. ALZ is an unpredictable disease.


I've witnessed that consistency, routine & structure work. A facility, a day program strives for that & it's hard to duplicate at home. It takes a team approach & yes, a finely tuned one all the better. I don't know if an inconsistency of assistance & people is fair to anyone.

I am starting to understand the reality of it all though & maybe that's the way it should be. It's about us, the caregivers as well. We have to care about ourselves. Trust our decisions & reasonings.

Blessings 🌸
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There are so many factors and what is right for one person is wrong for another. With my dad, he wanted to stay home. I wanted to honor that wish, but I feel like it took a toll. I failed to realize what that meant and how much I would have to take on. I tried. But since he passed, I really question myself and think maybe he would still be alive if I let him stay in a facility. I will never know.

With my grandmother, her 7 kids all agreed at 92 she needed to move to a facility. 2 years later she is still alive and adjusting. One just never knows. I wonder what will happen to me when that day comes when I can't stay in my own home.
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No perfect answer. Depends on the family's position to be able to help. My friend's mother fell at home and was hospitalized then placed in a long term care facility and she fell at the facility and was hurt there, too. We expect more from a facility because they are being paid dearly to watch over our family member but the facilities can't be with all the patients at all times. My friend and her siblings all live out of town so the best place is at a facility where someone is more likely to be there to help. I was lucky that I was able to keep my mom at home and I had a neighbor who would look after her while I went to work part-time.
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for mi I think in home care is better, when mi mother was a live I use to have 3 care givers, righ I only have 2 for my dad. one in the week days, and one for the weekends.but I am on top of everything, my dad live with me.
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Dejavu
You're a hero
None of this easy and having mom in a facility will present its own challenges too but if you can't get good help at home you may need to place mom

Broke my heart last night when my mom started crying when I put her to bed since she knows that is when I leave

May I ask if your mom's house has been empty the past 4 years while she's been with you ?
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I am agonizing over this decision right now. My mom has lived with me for 4 years already. Mild dementia, but I was able to work and she was very independent within the home. I do all cooking/cleaning/laundry, but she could fix herself breakfast and lunch.

Well, she got sick (UTI) and was in hospital. After that stay, she went to rehab. She has declined cognitively. She now can't remember the simplest steps to accomplish a task like getting dressed, going to the bathroom (almost completely incontinent now), or even eating meals. So I am currently her full-time caregiver.

I need to be working, but husband doesn't want strangers in our home when we aren't here. (Legitimate reasons relating to his business.) He also thinks it's too much for me to take care of her. I do have to change her every 2 hours, get her up standing or pushing the walker every hour or so to prevent too much pressure from sitting, etc. This is only week two. I see the benefit to never looking further ahead than the next hour.

My problem with putting her in somewhere (SNF or memory care) is guilt. She cried and wanted out of the rehab/nursing facility every day she was there, even though it was basically a decent place. I'm concerned with the eventual medicaid lookback (5 years) since she probably only has funds for 2 years of care if we can get her house cleaned out and sold.

I'm also angry that my siblings say sorry, let us know what we can do - while at the same time, not being willing to even take mom for a day or weekend during the past 4 years. They don't care if I put her in a nursing home. This doesn't affect them either way.

After reading all the responses here, I'm going to look into day care and/or in home care for a few hours a week so I can leave the house and get groceries and do errands.

My wish for everyone is a good night's sleep. That is what I crave the most!
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Jazzy2, glad the day program is a win for you & your husband. Maybe eventually increase the days if you are able. Don't worry about the negativity, that happens with any change in their routine. See if the program offers a bus service or if there is one around you that specializes in disabled & memory impairments. His insurance may even cover it. I have concerns with getting my brother in & out of the car, a negative scene usually develops, the bus service is well worth the extra $. The comradeship personnel provide is amazing! Stay strong & focused, Good Luck! BLessings🌸
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Just an update. My husband is adjusting the the facility and seems to really be enjoying it. He is participating in the activities and seems much more alert and present he no longer complains when I take him and drop him off. On the days he is home, he sleeps all day. Resting up I guess! It's not always easy getting him in and out of the car but it's worth it. He even helped bake cookies today. He has NEVER set foot in a kitchen.
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My husband has alz and is in memory care facility a month now. I miss him so, and he asks me every day if he can come home now. He cannot come home because he was behaving badly and it is unsafe for us both. He is safe in the facility, the food is ok, but they don't have enough help. It breaks my heart to see that they don't take care of him like I want them to, but nobody will take care of him like I did. so I guess I am stuck. the facility is 34 miles away and I go almost every day but it is wearing me down too so I am thinking about every other day eventho I need to be there every day. People tell me that most places are the same; not enough help and other problems.
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I hope I can make sense of what I want to add. My Mom is receiving excellent professional care in a dementia facility and I spend several hours a day with her. She is bathed, dressed, groomed, changed and has 3 healthy meals and snacks prepared daily. Still her illness is causing her skin to breakdown and she is becoming emaciated as she nears end-of-life. I feel comfort knowing this is not my or anyone else's fault and that she is cared for 24/7.
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Try care.com. You can read references of Caregivers as well as their background check. If you had caregivers like that, they definitely wouldn't have good references. Also check their ages. CNAs under mid-thirties just don't have that compassion an older CNA has. I had to hire CNAs and found that out the hard way.
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okhoneybee,, doesn't sound selfish ,, you've done a lot,, we all know when we have hit the breaking point. I really do relate this journey to giving birth. some people were "stay at home" moms and some nursed and stayed with them for 3 - 4 months then went back to work. Our Parents are our little babies now. It broke my heart when I dropped my child off at day care ,, I cried all the way to work. He would hold up his arms and cry for me ,, I felt like the worst mother in the world,, but after some time ,, he didn't even want to come home when it was time to leave. I feel that our loved ones do the same thing ,, cry and are sad ,, adjust and make friends and find interests in what's around them.
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AL is different from a nursing home, though. With AL, you live in your own apartment, but have the option to eat meals in a dining room and help if you need it. A nursing home is a whole different animal. Even though in-home caregivers are not always the best, living among old and dying people in a nursing home seems like the most depressing thing ever. AL seems great if it's a nice place. But to each his or her own!
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I just selected an AL facility for my mother. Prior to this placement she lived with her husband, and together they had in home care staff. When he passed, I continued to have the in home care. It was so expensive, and I had to also be in the home with mother for her care.

After a few months, being tired, from working, being away from my family. I had to make the decision for mother-her condition was not improving. There was never-ending situations with the home care staff. My mother and I was stressed. The AL facility is great, my mother is adjusting. I am trying to get my life back.

I think we as caregivers for our parents, want to do all that we can to keep them home and care for them. I am learning to have no guilt about the decision I made for my mother. I found that the time, and energy needed to care for my mother was greatly affecting me physically, and mentally. I love my mother with all my heart but I am physically and mentally tired.
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I chose to hire friends that I though I could trust. The first was an old roommate, he actually lived in my home for 3 years free so I could help him get straightened out. At first he was wonderful after a few months all he did was sleep on my couch!!!
Then comes one that was recommended from a friend of a friend, she seemed great also, very talkative, friendly, and recommended from someone who actually retired for the Police force as a dispatcher. Well I guess I should have checked her record!!! Bad mistake there, called in sick all the time or just did not show.
The third one I though well this is perfect!!! long term friend, also lived in my home twice trying to help him out. I trusted him so much we had a 12 year friendship and to me I considered him part of the family. Well again, After Mom was rushed to the hospital and we were advised by the doctor to place her in a home for her safety, she had started to fall and needed round the clock care. At that time I started to get my senses back, after 4-5 years of dealing with this your kind of brain dead. This time I realized that my dear friend had purchased his Gas, Beer and Food Even tools off of Mom's credit card.
She is now in a very nice home. I hate that she is not with me but I know its best for her. We are so fortunate to have found the place that we did. I can't speak highly enough about the facility and the staff members, all of them are wonderful. I do worry sometimes because I see Mom fading fast and I don't know if its the disease or if she sees others that are way worse than her and she is becoming like them. It really bothers me. I hate this disease!!!! I don't want my Mom to live this way but I don't want her to die.
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ChrisA1, where are you getting your no cost home care? I'm finding the day care to be less expensive in that home caregiver is $20 an hour and day care is $120 a day for up to 12 hours AND he gets 3 nutritious meals. Plus, I think it's really been good for him. He actually carried on a conversation with me on the way home today, commenting on things he observed in the environment. Yea! Progress for now until the next decline.
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Care facility or home care ? Home care hands down. Home care provides professional one-on-one care, parents enjoy their home, better protection and it is a fraction of the cost of a care facility. In fact, home care may have no cost.
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Can't agree more with all of you loving caregivers! Have had little success with agency people who claim their aides are, "experienced & knowledgeable with ALZ." It's been no break for me, still up to let them in at 7:30, then hearing & most always having to intervene when the aide is clueless on how to handle my brother. In the 6 years of this journey, I know of 6 who were capable, 2 of those from an agency, leaving to move on to better opportunities. The 4 private as well. It almost seems less stressful to take care of him on my own, even though I keep trying & hoping for the "perfit fit." The day programs, on the other hand, a lifesaver. He wants to go, lucky for me, so he does. Yes, he probably sleeps there more these days I know, but still, the support & stimulation they provide is more than I can do at home. For example bathroom reminders work there, "no" is what I hear at home, so changing is never ending. Stay the course with an excellent day program, use fibs to aid in encouraging him to go if need be, try gradually increasing the days, better for him & you. Respite care is excellent as well, find a good facility which offers short stays, even a 3 night, a tease yes, but helps to recharge you. Not everything will work forever, changing course will happen, I am "getting it," thinking that a good facility versus home may be a better choice, yet still tough to do, not in denial just saddened. The care needed & behavior changes, all part of the progression, are winning. An experienced & knowledgeable team do make a difference. Stay strong & focused & take care of you, absence of any guilt. Blessings 🌸
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Wish I could find a memory care facility like Canyon 727

Mom's is $330 a day plus I have personal caregivers with her 12 hours a day but she is correct that they let the residents do and say what they want which means they largely ignore them

Fights break out, folks fall and UTIs are rampant as no one is changed or taken to the bathroom every 2 hours despite the $450 a month incontinence fee

Whether at home or in a facility, dementia is a long tiring journey for everyone
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Even the best facilities make mistakes in medication/ residents fall. When a resident presses a button, often they have to wait. My Mother 991/2 yrs old was made ill by bad decisions/ negligence/ intentional acts at a rogue facility. We moved her to a great facility. Myself or other family are with her all the time. She is improving every day from the state her rogue facility had left her. She paid insurance for round the clock Nurses Aids. The rogue facility did not provide the same for her yet kept on charging her $1,000 per month after they took over the former facility that had gone bankrupt. I say it can take round the clock attentive family members giving their LO round the clock care whether the LO is at home or at a facility. For my Mother, being able to get herself out of bed to go to the bathroom herself is a danger to her. We don't leave her alone day or night. Her cat is here too in Independent Living with me and other family members 24 x 7. We found a very caring facility. It is no more expensive than Assisted Living for herself alone. She is thriving and happy. We are Blessed.
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You may have had an unfavorable experience with home care, but there home care programs that are superior to an facility care because of better intensity of care, more pleasing meals, more positive environment and a fraction of facility care cost. Before you commit your parent to the unfamiliar facility care program, contact us for the best experience for mom or dad.
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I am going back to at home care for my wife after trying Memory Care. I just found out that many memory care facilities hae a policy of taking all your money then kicking the patient our when you are broke. The ones having continuous care are filled up. Another one has a policy of calling 911 for every little problem and having taken to emergency where they are admitted for observation which means Medicare will not pay 80% of the hospital bill. Others have a policy of accepting levels one & two but, kicking them out if they become worse. Others promise physical therapy and speech therapy but do not do it. The last one I tried required everyone to sit around and watch whatever TV program the staff wanted and a head nurse wo told me, "This is MY facility and I will do whatever I want to your wife and you have no say"
Another problem is that Medicare no longer allows rails on the beds and now there is an effort to ban bed and chair alarms. It seems the new thinking is that it is the patients right to fall. With all the interest in health care why is there no interest in healthcare for the elderly?
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I've had experiences both good and bad, for my cognitively-intact stroke-survivor spouse who is a fall risk due to hemiparesis. We've just come off a multi-year great experience with an agency caregiver who was observant, industrious and good company during her once a week five-hour shift. We miss her greatly. On the bad side, from another agency, when I still had a job with a long commute and needed a 12 hour shift, the aide -- who was really good at some things -- asked me one day if he could work for us privately. It was clear to me that during my lengthy absences he'd been going through stuff on my desk and found an invoice from the agency, which indicated the hourly agency rate. After I said no, he started not showing up (so I couldn't get to work) and after about the third time of that, the agency told me he wouldn't be coming back. No reason given. I still owed them for a shift for him and told them via certified mail that I'd pay it if they gave me a reason. If not, no dough. Never heard from them again.
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I am in a different position. My mother has dementia and other health issues. THe quality of life and care that she gets in an assisted living faciity is far superior to the care she would have been receiving at home with an aide. We recently moved Mom from AL to the memory care unti in the same facilty, and Mom is having a good time. They help her with daily hygiene, clean the room, she has meals in the dining room, and is taken on outings.
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I had my 80 yr old mom, with vascular dementia, living in my home for one year. We had caregivers daily, from 8am to 8pm. The caregivers were awesome. Very attentive and kept mom busy with singing puzzles, walking and PT exercises. Cost $7800/mo.
A beautiful new Memory Care facility opened up. I was getting tired from interrupted sleep every night and from having caregivers in my house everyday. We had just down-sized our home and we were trying to get used to the smaller place, when we had to take over mom's care. We moved her into the memory care unit. $4500/mo I supply briefs, pads & wipes, as well as her clothing, linens & hygiene supplies. I was amazed by the relief I felt and how my mother adapted so soon. I did have some issues with the caregivers, mostly because of her incontinence and anal redness. I had her PCP order Calmoseptine twice daily, instead of as needed. I found out that PRN/as needed meds are rarely given. I'm told that the CNA cannot make medical decisions, but the med techs don't assess (look at her butt). So a twice a day order has worked. They toilet her every 2 hrs, while awake. This is a $500/mo incontinence fee, included in the $4500 that I mentioned earlier. The caregivers are trained to allow the residents to do and say what they want. They go along with their crazy stories and redirect them if the are stressing over something. My mom asks where her husband is very often (he is deceased) and they say he is playing poker or at Walmart. She is fine with that. My sisters and I had a hard time in not correcting/arguing with her. We have learned a lot, since mom has been in the facility. Hope this helps. Your health and wellbeing is important. You can visit as often as you want & you can be free to enjoy your life. God Bless you all!
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I disagree with the "let them indulge" stuff - it doesn't produce a happiness that lasts more than the few minutes of eating. It adds health complications which make care worse. Doing a few other things, is much more healing - like read to her, sit for half an hour every few days, without any chores or TV, just be silent and chat a bit.
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Give him the ice cream! My mom, who was always prone to excess as far as eating and drinking, now has hardly any appetite or interest in alcohol. She was very overweight before her stroke and now she is bordering on skinny. She herself said, "I finally lost weight and got sober!" Boy, do I wish she'd gotten sober 35 years ago - but never mind that. It's so weird to have to urge her to eat and drink (enough water, that is). She has always had super high blood pressure, barely controlled with meds, and now her blood pressure tends to be too low so she has gone off them. Crazy!

Anyway, my feeling is that when our loved ones are nearing the end of their lives, we should allow them to indulge in any pleasures they want. Why not? That's what I hope for when I'm at that age. (If you haven't read Roz Chast's brilliant graphic memoir about her parents' decline, get it asap!)
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Depending on the abilities/disabilities of the elder, home-based or small family-based residential facilities may be a possibilty.
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But, again, maybe one reason he's made it 11 months is because I limit his ice cream and make him socialize 3 days a week!
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Sheilasllison, your situation is what I'm trying to duplicate. I fully intend to keep him at home as long as I can, but have started taking him to day care 3 days a week. I think it does him a lot of good, and so do his hospice nurses, but he would prefer to stay home in bed and sleep all day. That's where I'm torn between doing what I think is best for him or what he wants. I have the same issue with ice cream. Not good for his blood sugar but he doesn't have a lot of time yet. Why not just make him happy.
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