Full time care for someone at home

Bumblebeez SC Zone 7March 3, 2012

Many of the posts I've read here have to do with caring for relatives who don't live at home or are not really bad off.

When I do see a post about someone who needs a lot of care, usually a nursing home is recommended.

I would like to hear from anyone who has cared for someone until their death, if possible.

10 years ago my mother was very sick and taken care of at home until her death. I did some of the care but my brother and his wife lived at their house most of the time.

This involved hospital bed, changing diapers, feeding tube, bedsores, etc.

Now, my dad lives with me, he has been here 11.5 years and in the last two days, the dementia has escalated.

Nighttime is an issue because his body is fairly active, enough for him to get out of bed and fall down, essentially.

I just need to talk with someone who has gone this route with out the gentle " think about a nursing home" routine.

Our house is set up for all his needs. He has his own floor, roll in shower, laundry, kitchen, etc. and I am home all the time.

I know about Hoyer lifts, transfer boards, meds, etc. but right now he needs a rubber room! (w/a tv set to espn 24/7)


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One of the big differences between home and NH care is that night time problem. They have staff on duty 24 hours per day. At home is great, but family has to sleep sometime. His active time is a bad time for the rest of the family

As you describe his living space, it sounds as if he is somewhat away from the rest of the house. True?? if so, be sure that you have some sort of monitor in the rooms (like a baby monitor) so that you can hear if he gets into some sort of dificulty or falls

Decision Making Time comes when the health of the caretaker becomes threatened. Cross your fingers and hope that you will be able to tend to his needs as long as needed.

    Bookmark   March 3, 2012 at 3:27PM
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Yes, Agnes is right. Almost always, NH care is recommended when the home caregiver is totally overwhelmed, especially after years of back-breaking and heartbreaking work.

    Bookmark   March 3, 2012 at 3:40PM
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Connie Kru

I took care of my MIL till the end.
The baby monitors with black and white camera's were my best help. I had two and placed them where I could see her and I would go and help her when I thought she needed help.
I also used bells on her walker during the nite and if I heard those bells, I was up in a flash and there to help her.
I also had a aid who came in once or twice a week for 4 hours, not to really do anything for her, but it gave me time to just be me and that was very helpful for my sanity.
Good luck

    Bookmark   March 3, 2012 at 3:45PM
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Bumblebeez SC Zone 7

Thanks Agnes so much.

I do have baby monitors and am in good health as is my husband. Dad is "away" but I am also there all the time checking on him and such. The night time thing has only very recently become an issue so I have to find a way to deal with it.

I don't have exceptionally high views of nursing homes as there has been abuse and lack of care in family members who also had daily visits and very watchful relatives.
My grandmother lost a leg to gangrene and that was with my mother going every day. It was horrifying and I wished they had sued. Similar things with other relatives. He's out of money too so it would be the medicaid ward.

I think I am going to get a hospital bed with railings, a bed monitor and see what kind of sleeping pill might work. I called his doc this morning and there is something waiting at the pharmacy for me to go pick up. Don't know yet what it is, I think it's an anti psychotic sleeping med.

I will be alert with the baby monitor for tonight and the new med and hopefully the doc will see him Monday to get on some dementia meds.
He's never had a sleeping med other than a half dose of Benadryl- which his doc approved.

I really appreciate being able to talk about this.

    Bookmark   March 3, 2012 at 3:52PM
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"Nighttime is an issue because his body is fairly active, enough for him to get out of bed and fall down, essentially."

In my opinion, you've crossed a threshold. Once it becomes apparent that constant attendance is required, the jig is pretty much up. However, dementia can be tricky. Ebbs and flows. Sounds to me like maybe the infamous "sundowner" syndrome.

In my own case with mom for the last 20 years, we've been through several periods where I've hired people in for a few weeks to handle the constant-attendance need. Thankfully, these periods always passed and we returned to "normal". However, I've always known that if it did not pass in a few weeks that would be a decision-point.

Mom's heart is progressively weakening and I've noticed a correlation between behavior and oxygen saturation levels. This is easily and quickly measured with a pulse oxymeter which is easy and cheap to obtain. If the oxygen level is too low, basically the brain isn't able to work right. Mom's fine during the day but her level drops overnight. Accordingly I have her on oxygen overnight and she does fine with it. I also sleep in another bed a few feet away from hers -- which has turned out to be important from time-to-time.

Not presuming to know what your situation is, but it's been a factor with us and, from your description, thought worthy of mention. Link below.

They can measure this at the Dr's office, too, and if its low, medicare handles the oxygen supplies.

Here is a link that might be useful: pulse oxymeters

    Bookmark   March 3, 2012 at 4:00PM
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Bumblebeez SC Zone 7

Sushipup, thank you, I haven't had years of back breaking work so I think I can continue.

Connie, I'm glad it worked for you, thank you. I am going to get a better baby monitor, I can really see how that would be most effective.

Asolo, interesting about the oxygen levels. I don't think that's an issue, he has a strong heart and has never smoked or been a drinker. I'll mention it to his doctor.
I will do what I can as long as I can.
If necessary, sleep near by. It will be fine.
But I'm upping the monitor and bells first.

My dad is a real sweetheart, a kind and loving, peaceful man and is not in that aspect, at all difficult. Rarely complains.

    Bookmark   March 3, 2012 at 4:17PM
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"My dad is a real sweetheart....."

Mom, too. If she wasn't, I'm not sure I could handle it.

Mom will be 100 in a few months. Nobody in her genetic line has come close. And we still have at least a little fun every day. Some say that as people grow older their personality becomes a more concentrated version of what it was before. Seems to be how it is with mom. She was always a pleasant person. She's actually become more so. Sounds like your dad is like that.

I think you're doing the right thing. I think you should feel some pride in it.

    Bookmark   March 3, 2012 at 4:28PM
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Bumblebeez SC Zone 7

I really appreciate that encouragement, Asolo. It is the right thing as long as I'm able.
And you are doing a beautiful thing for your mother, too.
100! An achievement in its self.
My mother was cankerous and demanding and that made caring for her so much harder. I felt resentful but I don't feel that way at all for my Dad.
I think the rest of the world thinks I should put him in a nursing home and go have a life, whatever that is.

    Bookmark   March 3, 2012 at 5:04PM
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"....the rest of the world..."

....can think what it wants as long as I'm confident I'm doing the right thing. IMHO, there's nothing I could be doing commercially, socially, or otherwise that would be as valuable as what I am doing. Thankfully, my larger family agrees. They have been very supportive. Like you, I will continue as long as I'm able.

    Bookmark   March 3, 2012 at 5:33PM
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You might want to talk with the doctor about the issue of guardrails on the bed. Most NH are taking them out except in very serious cases, because they've been implicated many times in actually causing more problems than they solve.

Instead of guardrails, there are several variants of "helping hand" devices. This link is to a tall pole-mount type, but I've seen others that just slip between the mattress and box spring, and swivel aside when not needed.

Please note that I don't have any personal experience with these devices; I've only bought smaller items from this company. My MIL who lives with us has dementia, and DH and I have agreed that she will, in fact, have to go into a facility at some point. But for now she functions day to day just fine, so all she needs is a couple of "safety grip" suction devices by the bathtub.

Best of luck to you; you are a very brave and caring person.

Here is a link that might be useful: Security pole - online catalog

    Bookmark   March 4, 2012 at 2:23PM
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Bumblebeez SC Zone 7

Today was a workout but I hope I accomplished something that will work.
Dad has a small "tv" room and a large bedroom.
(He also, incidentally has a living room and kitchen)
Wee switched the bedroom and tv room stuff.
The tv room (really a bedroom) was transformed into a zen sleeping area.
King mattress and box springs on floor, another full mattress next to it and these went tight wall to wall. Small soft carpet area and a nightlite and cd player. He tosses and turns like the hands on a clock all night and will wander- but he is very unsteady even with a walker and doesn't need to be up at all without help.

He can't go anywhere in this room nor fall off the bed.Nothing on the wall to grab, and if he rolls off the low mattress onto the carpet he could get back up.

I will come in the middle of the night to take him to the bathroom.

The dog is ecstatic, it's like a huge dogbed and just her height. She normally sleeps with him during the day but has used doggie stairs, which she is a little leery of.

    Bookmark   March 4, 2012 at 6:54PM
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sounds good! hope it works out for you, at least for a while.

If he decided to crawl around instead of trying to stand, could he get into another room and maybe pull up on something?

    Bookmark   March 5, 2012 at 4:01PM
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Bumblebeez SC Zone 7

There is a lift chair in the room- it weighs a ton- and is pushed up against the end of the king bed and in front of the closet. He could, crawl up onto that if he wanted.
When he is sleeping in the room or wants to lay down for awhile, I will lock the door. Otherwise he won't be in the room.
He will sit in his recliner in front of his tv- in another room.

If he is ever fully bedridden, we will explore other options. But the dementia at night makes him want to go places, without a walker, and he will seriously hurt himself. That's how he broke both hips- 11 years apart, however.

Some nights he is very vocal when he sleeps, Sat. night, the night before the Move to the zen room, he was pressed up lengthwise against the rails of his headboard violently shaking it back and forth saying, let me out! I'm in a cage...
then he would start telling stories, talk about his job over the years (nuclear engineer), tell bedtime stories...

No more headboard now and no place to fall. A boxsprings and mattress is still not right on the floor though. He can lift himself up to the walker when I get him up for breakfast- he eats in his recliner weekdays. Weekends, breakfast upstairs.

Last night was a very good experience for both of us.

    Bookmark   March 5, 2012 at 4:56PM
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if you can keep him out of nursing home please do. the high patient to staff ratio doesn't necessarily make it any safer for him. A small assisted living may be a better option if it ever came down to it. You can get some relief by asking doctor to send a referral to a home health agency which will help with his meals, laundry, cleaning and bathing. Ask for respite care which you have the option of dad going to a facility for a week or two or having sometimes they will also send someone to your home to do the night shift for a certain period of time. benefits depend on where you live. you can call your local aging agencies for information and or referrals.

    Bookmark   March 8, 2012 at 9:40PM
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I personally cared for my grandmother for a year as she battled pancreatic cancer. I was with her 24 hours - 7 days a week. It took it's toal but truthfully, the cancer was much easier to deal with than my mom's husband who has dimentia/alzheimers. The physical ailment is much easier than something with the brain and someone with a mind of thier own. Night time is the worst but we have installed door alarms and have night lights on at all times. His bedroom is 6 feet from his bed but he still gets lost. We have installed big signs on the bathroom door, Darolds bathroom. Stop signs are on the exit doors and cabinets/drawers where sharp items/meds are kept. We will be installing child proof locks soon to avoid any problems. He did get out one time, left the house at 11 pm fully dressed in the middle of a Wisconsin January night. The police found him the next day in pretty good shape. We were fortunate that a good samiritan found him, bought him a meal and paid for a taxi to take him to the nearest homeless shelter as that person thought he was homeless.
The Alzheimers foundation/store has allot of products that may be some help if your intersted.

    Bookmark   March 19, 2012 at 4:23PM
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I can relate to many of your situations. My siblings (3 of us)did most of the carework for our dad his last days. You couldn't have asked for a better patient. Hated having to ask for help. Told me "that was different" when I reminded him HE (with help from my mom & us kids as younguns)took care of his dad :-0 Mama moved into another room so she could get rest & one of us would sleep in the room with him to help him at night. A "baby monitor" aka sick room monitor was a huge help. The older g'kids helped some, as well.

Fast forward 10-11 years. Mama's health is failing, & she needs help. AT THIS TIME we don't stay 24/7 but that time is coming. We do laundry, all the cleaning, cooking, etc.

We would welcome suggestions on how to get her to improve hygeine. She will take a shower (has to have help which is no problem) ONLY if (1) she's going to the dr the next day (2) one of us makes a huge issue of it....and sometimes not then. This is NOT the "norm" of the mother who raised us. And clean her dentures? Let's don't even go there! Bro text me this morning saying she has "old person/nursing home smell" even after shower & the odor lingers in the vehicles. She just plain STINKS much of the time.

Any suggestions would certainly be welcome. Bro can "get thru" to her easier than Sis & I for who-knows-what-reason (I'm the oldest), & he's stated he's going to call for some home health if she doesn't start cooperating better. Dont think he's told her that yet. We KNOW she doesn't feel good & is loosing ground, but basic hygeine still needs to be maintained.

Any ideas????? I don't have home computer but will check back at the public library in a couple of days. Hope you have some suggetions, tips for me :-0 TIA

    Bookmark   March 19, 2012 at 6:09PM
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Bumblebeez SC Zone 7

Jayokie, you are at the point where someone needs to take over. Buy a box of disposable gloves and wash her- everywhere. Take her dentures out, clean them. it's ok that's she's not the mother you knew, aging changes people.
If it seems too disgusting, try to think of her as a baby that needs the same kind of help.

An update on my Dad- he is wonderful now. Right after I last posted here, I took him off of the nightime sleep aid and almost all dementia has gone. He sleeps through the night easily with no tossing or noise. He can get up and move around like normal.

He had been on this for a year ( 25 mg Benedryl) and initially it worked fine.
I can hardly believe the changes in removing him from something so simple.
Now, he is on very few meds- zocar and plavix. A vitamin.

I'm grateful.

    Bookmark   March 20, 2012 at 10:41AM
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Jayokie, poor hygiene unfortunately is a problem with many elderly loved ones. There are all kinds of reasons -- fear of falling in shower, over sensitivity to water temperatures, loss of smell, dementia -- just about anything could be a reason for resisting daily good hygiene practices. It sounds like your mother is beyond reasoning with. You probably will not be able to convince her that she needs to bathe and clean her dentures regularly. Your best approach will be to just to take care of things without asking permission. Take a matter-of-fact attitude rather than trying to explain why she needs to be cleaner. And, I strongly suggest that you NOT threaten bringing in a home health aide. The aide should be considered a welcome friend and helper and not viewed as a punishment.

Make sure her towels and bed linens are washed weekly. Place coverings (just plain old bath towels would work) on her chairs and launder them regularly. Make sure her laundry is done each week and wash her undergarments in hot water. Instead of trying for a daily bath or shower, try to get it done 2-3 times a week. Make it as pleasant as possible, making sure the bathroom is warm and the water is warm before it touches her. Clean her dentures while she's napping or after she goes to sleep at night.

Also, please come to terms with the fact that your mom will never be the woman she once was. It does you no good to dwell on her past years of fastidious hygiene. This is who she is now, and you must deal with the person she has become. I know this is difficult for you and your family. Just remember that your situation is not unique. As I said before, elder hygiene problems are common. Not easy to deal with, that's for sure. Please feel free to return to this forum for encouragement and understanding.

    Bookmark   March 20, 2012 at 4:10PM
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"...please come to terms with the fact that your mom will never be the woman she once was."

"This is who she is now, and you must deal with the person she has become."

Yup. Hard to accept the irreversible fact...and how, unlike children, they can't seem to learn anything new nor change the new discouraging behaviors. Sometimes new (to them) "requirements" can be imposed and accepted. Sometimes they can't. It's different in every case. However, often at some point imposition is required if the person is to remain living where they are.

Care-givers, also, have individual limitations. Different people have different living situations and different personal capacities. If you can handle it, by all means take charge and go ahead. But, if you can't, don't apologize for it. Do acknowledge the realities of what there is to work with and handle things accordingly.

    Bookmark   March 20, 2012 at 7:34PM
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And there is the mental/emotional problems of the child learning to be the parent, and treating your old parent in ways you probably never treated your own children.

Few people talk about the massive emotional switch of child to parent, which really adds to the sheer physical difficulties of the caregiving.

    Bookmark   March 20, 2012 at 8:44PM
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I will never forget what my mother's minister told me at her funeral...
"Your Mother died a long, long time ago. It was time for the rest of her to go,"

And that's about it. The Mother or Father is already gone. Do the best you can, do what you must do, and give thanks that you can remember the loved ones as they once were.

    Bookmark   March 21, 2012 at 12:43AM
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Bumbleez-SO glad to hear the simple change in meds has made such a huge improvement for your dad (& therefore, for you!)

Thanks to all who have replied to our situtation. We have disposable gloves. I clean Mama's dentures -- when she will take them out (never out unless to be cleaned). My sis will if she HAS to. I do laundry weekly but this month have had to work extra hrs so will be 2 wks when I get there Thurs. No idea what I'll find, but I'll get it caught up. She sleeps in her recliner most of the time so only need to change sheets every 2 wks.

We're not using home health as punishment....in the past when the dr ordered it (post surgery, etc) the aides could get her to do things she refuses to do for us. They don't easily take "I don't want to" for an answer. They can - gently - "push" where we can't simply because of the relationship. When she began to feel better, she "fired" them saying "my girls can help me"....the bathroom is a sauna (to us) & I try to get the water warm before she undresses altho she sometimes gets head of me :-)

I have found that putting her clothes in the washer with white vinegar (vinegar, water, mix, then add clothes), let them soak awhile. Finish cycle & wash with detergent helps a LOT with the odor in her clothes. I plan/hope to give her chair a good cleaning while there - time is limited this week because of dr appt - & we're going to try spraying her chair with Lysol on a regular basis. Either that or Febreeze.

Her mind is still pretty sharp. No dementia tho she does forget from time to time, but goodness! *I* do that :-0 She sometimes forgets meds so we're working on a solution for that. Think we have it, but don't know if bro has implemented it or not. Will find out in a day or 2.

Thank you all so very much for listening & for the feedback. I'll be back to read other posts & any other suggestion. Maybe I'll be able to help some of you at some point even if it is "just" listening. :-)

    Bookmark   March 21, 2012 at 9:37AM
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Jayokie, please check out the long thread here about dementia. You think that your mother does not have dementia? I think she probably does. Changes in personality, self-care, resistance to help, all are part of dementia. Don't make excuses for her.

This is all so difficult, I know.

    Bookmark   March 21, 2012 at 12:57PM
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I second what sushipup just said. Forgetfulness is not the only symptom of dementia. The extreme aversion to cleanliness, extreme stubbornness, resistance to help, extreme self-absorption, etc. are also symptoms. We know how hard this is for you and your family. The best thing you can do for yourself is to see the situation as it really is. Then you won't have unrealistic expectations. Also, then you can truly love your failing loved one. You won't get as frustrated or resentful (or even angry). And you won't feel guilty about "not doing enough." (Sometimes we think that if only we could do something differently or come up with a perfect care plan, our loved one's situation would improve.) But that's not the reality.

    Bookmark   March 22, 2012 at 12:03AM
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