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Later stages of care
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: LarryD

You are not alone. If you have watched this site for some time you will note who are in the early stages and who are in the middle and who are in the later stages. The only problem with this is some of our loved ones fit into two or more categories at the same time. And some seemingly go in and out of later stages only to make marvelous recoveries or sometimes devastating downturns.

My wife first showed some evidence ten or twelve years ago but kept denying it until about seven years ago. She was diagnosed five years ago now and progressed to a point where she can no longer walk, feed herself, or help with her transfer from bed to chair and chair to bed. I have a helper in the mornings for an hour to help get her cleaned up, dressed, and into her chair. And my daughter helps get her ready and into bed in the evening. This together with my constant presence have allowed us to maintain a system to keep her here at home with me. I am committed to this as long as my health permits.

I admire you for being able to work and keep your husband at home. For about a year, while my wife was still able to walk and transfer to a toilet, even though she was sometimes incontinent; I took her to a day care from 8 AM to 3:30 PM twice a week. I miss the freedom that gave me to have a day to myself. Now, I put her in front of the TV and put on a movie or something she likes and I go in another room and read or nap.

I have said that each day is different and yet the same..... Bless you on your journey as you find what works for you. You are not alone.,

LarryD
Internal Administrator
Posted: Tuesday, January 17, 2012 4:56 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: C.Traill

I need to know there are caregivers out there who are caring for their LO in later stages at home.
I'm feeling like the lone ranger. My husband has needed 24/7 care for almost 8 years now. He communicates non-verbally for the most part. I shower him daily, change his depends, and now occasionally assist him with eating. He is mostly steady on his feet, wanders in the house not outside... yet. I work 4 days a week and pay a caregiver to be with him when I'm at work. With the medication he sleeps through the night ... though his half or our bed is pretty soggy in the morning. Usually I can just change the part under him and make the bed clean.
Anyway what I need is to have emotional support and know I am not alone. Help?
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Morgan R

quote:
Originally posted by LarryD:
It has probably been discussed elsewhere but I realize it is possible for some of us to continue at home because our loved ones are not runners. Plus, even though they may not be able to feed themselves, they can chew or at least remember how to swallow. When this ability is gone, then I intend to call in hospice again. Even with my wife the way she is, there is some quality of life left. I treasure each of these days.

Morgan, does your husband still respond to you?


I guess it depends on what you would call responding, if you mean does he know me, NO, does he seem to know I am in the room, AT TIMES HE DOES, most of the time he just eats and sleeps and that is about it. Took him in the mobility van we have to the bank with me today and he slept the whole time we were in the bank and the whole time we were out and about. He does not know he is in the world.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Morgan R

No you are far from alone. I care for my husband at home, he has been diagnosed 10 years this November, we are now embarking on year 11. He is in stage 7, requires 24/7 care and has for the last 8 years. I have help from my daughter and son-in-law mornings to get him out of bed and into his chair, then it is just me the rest of the time. I have a lady who comes twice each week so that I can do my errands but she does no hands on with him, only sits.

My husband is in stage 7. Cannot feed himself, walk, talk, or do anything at all.


You will find that many people are doing what you are.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: LarryD

It has probably been discussed elsewhere but I realize it is possible for some of us to continue at home because our loved ones are not runners. Plus, even though they may not be able to feed themselves, they can chew or at least remember how to swallow. When this ability is gone, then I intend to call in hospice again. Even with my wife the way she is, there is some quality of life left. I treasure each of these days.

Morgan, does your husband still respond to you?
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: C.Traill

Thank you all this helps so much. I can't even say how much I appreciate hearing from you.
I do treasure the quality of life. I think you are also right about being home since they are not runners.
Morgan I wondering how you change him, if you can transfer him from chair... I don't mean to pry I just try to figure out the practicality s of care. My husband weighs about 230lbs now, was 262.
Lurk, Thanks for the post's to read.
smiling though tired
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: lurk

I know for certain that we have some guys on this board who can give you wonderful help. Read the posts of LarryD, HESpeaks, Roger and Bob (I call him Cool Bob because of the glasses, but all of them are cool). They all seem to be at the stage where you are. Others will come forward also. They don't post as much as their lives seem to be "more of same" every day, but they are a wealth of information.

CTrail, you have helped me in the past. I wish you Happy Learning at your new fork in the road.

(Ha, looks like LarryD beat me to the post.)
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Cathy J. M.

When your spouse gets to the stage where they're mostly sleeping -- of course they still need toileting, feeding, bathing and just plain loving attention. But do you also find that you have some time during the day when you can concentrate on other things, as long as you keep an eye on them?

Right now I'd say my partner is almost at the other extreme. She doesn't need 100 percent of someone's attention all the time -- is usually responsive to "Wait just a minute, I've got my hands full" -- but does need a LOT of attention.

We have a paid caregiver so I can work (in a nearby building) and with luck (and continued state funding) this will continue indefinitely. But when I'm with her now, I'm lucky to be able to cook or clean up the kitchen -- mostly I do things with her.

So -- is it just a fantasy of mine that this will change? Maybe the feeding, toileting (and extra laundry) will more than make up for the extra sleep she gets.

I feel funny even asking this -- because I'm really, really enjoying this time with her now. I just have a very hazy idea of what might come in the future. I don't want to dwell on it -- and every LO is different -- but the people in this thread are way ahead of me and maybe could give me a clearer picture of what it's like to care for a stage 6 and 7 spouse.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: C.Traill

Holy Mackerel, I had not thought of a hoyer lift. I'm impressed by your skill. Thank you Morgan for answering my question. Your description of care cured me of my "poor me funk"
smiles.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Morgan R

quote:
Originally posted by C.Traill:
Thank you all this helps so much. I can't even say how much I appreciate hearing from you.
I do treasure the quality of life. I think you are also right about being home since they are not runners.
Morgan I wondering how you change him, if you can transfer him from chair... I don't mean to pry I just try to figure out the practicality s of care. My husband weighs about 230lbs now, was 262.
Lurk, Thanks for the post's to read.
smiling though tired


Well the answer to how I change him will come as a big surprise to you. I have nerve damage in my back, have had back surgery and absolutely cannot log roll my husband in bed to do the changes. I use the Hoyer lift. I use the divided leg sling, I put the brief (diaper) in the chair, I clean my husband, sit him down on the brief in the chair and lower him with the lift. I then remove the sling from the hoyer lift, I fasten the brief and zoom we are through.
I have cared for him this way for well over a year now and he has no skin breakdown at all. In fact the Hospice nurse said his skin is taken care of better than a team of nurses could do. Made me feel quite good.
If I had not figured out this method of care I could no longer keep my husband home. It saved us.
Each time I change him I move him to a different chair, wheel chair, gerri chair and recliner chair. That is how our day goes.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by Morgan R:


Well the answer to how I change him will come as a big surprise to you. I have nerve damage in my back, have had back surgery and absolutely cannot log roll my husband in bed to do the changes. I use the Hoyer lift. I use the divided leg sling, I put the brief (diaper) in the chair, I clean my husband, sit him down on the brief in the chair and lower him with the lift. I then remove the sling from the hoyer lift, I fasten the brief and zoom we are through.
I have cared for him this way for well over a year now and he has no skin breakdown at all. In fact the Hospice nurse said his skin is taken care of better than a team of nurses could do. Made me feel quite good.
If I had not figured out this method of care I could no longer keep my husband home. It saved us.
Each time I change him I move him to a different chair, wheel chair, gerri chair and recliner chair. That is how our day goes.


Wow, this is very encouraging!
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: LarryD

Morgan,

I am impressed. You must know you are doing a great job. I dread the day we might have to go to a hoyer lift. My wife freaks out as it is when we lift her. Something about total loss of control but not the awareness. Hopefully the awareness goes before the lift becomes necessary. By the way, I don't think my wife knows really who I am most of the time either. Sometimes she asks me who I am but most of the time she just accepts that I am the one who is always there. She still thinks she can do stuff but lets me do it instead. It works....
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Rkg

C Traill, As your finding out, your not alone. There are many here who have LO's in the later stages.

I have been at 24/7 care for a little over a year now, though I had to quit my job a couple of years ago to care for my Dh. I could still leave him for short periods, but now that is impossible. I can't imagine 8 years. I am worn out now. My DH is late stage 6 to early 7 (not so sure anymore).

I know for my FIL who passed 3 years ago from complications of Alzheimer's he was still ambulatory, basically up until the last couple of weeks and then still with guidance so you may never need the lift. Though the Hoyer lift is a God send for many.


Just know your not alone, we are all in the same boat.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: C.Traill

Thanks Rkg, I like the old Cliche prepare for the worst and hope for the best,
There was one time when my DO was ill and fell out of bed and I had to have the firemen come and act as a hoyer lift.
I don't know if anyone can use the trial and error night incontinence protection.... I use a large garbage bag, a large towel,puppy pads, a regular protection pad [left over from grand-baby] and a lap throw to cover the whole thing [including the side rail ... on the upper half of the bed] This combination usually holds and allows just partial change of our bedding and lets us sleep together which is important for us for comfort.
Last night was an exception of everything got washed and I am just remaking the bed. DO is asleep in chair in family room. So as soon as blanket drys it's bed time. Grateful for time to think and write this note.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: lurk

quote:
Originally posted by C.Traill:
Holy Mackerel, I had not thought of a hoyer lift. I'm impressed by your skill. Thank you Morgan for answering my question. Your description of care cured me of my "poor me funk"
smiles.


It cured every one of us!
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Morgan R

[QUOTE]Originally posted by Cathy J. M.:
When your spouse gets to the stage where they're mostly sleeping -- of course they still need toileting, feeding, bathing and just plain loving attention. But do you also find that you have some time during the day when you can concentrate on other things, as long as you keep an eye on them?

Yes Cathy, you have time to cook and do other things, at the stage 7 it is mostly as you said, sleeping, changing, feeding, bathing and just plain love, keeping them safe. You will have time in between all this. With you being able to continue working if your caregiver can do these things then your work can continue.





.[/QUOTE
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Be Strong 2

quote:
Originally posted by lurk:
I know for certain that we have some guys on this board who can give you wonderful help. Read the posts of LarryD, HESpeaks, Roger and Bob (I call him Cool Bob because of the glasses, but all of them are cool). They all seem to be at the stage where you are. Others will come forward also. They don't post as much as their lives seem to be "more of same" every day, but they are a wealth of information.

CTrail, you have helped me in the past. I wish you Happy Learning at your new fork in the road.

(Ha, looks like LarryD beat me to the post.)


Lurk, thanks for the kind words but we're not quite there yet. My DW is a solid stage 5 but completely functional, with guidance. Therefore, these later stage threads scare the h--- out of me. I'm not sure how I will handle things. We have a 2 story house so that could definitely be a problem in the future if I try to keep her at home.

Bob Cool
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: lurk

quote:
[/QUOTE]

Lurk, thanks for the kind words but we're not quite there yet. My DW is a solid stage 5 but completely functional, with guidance. Therefore, these later stage threads scare the h--- out of me. I'm not sure how I will handle things. We have a 2 story house so that could definitely be a problem in the future if I try to keep her at home.

Bob Cool


Sorry, Bob, I knew that. I was enhancing my bionics and should have waited until my circuits were reactivated to reply. Wink

This thread has been very educational, hasn't it? C Trail thanks for the thread. Morgan thanks for the enlightening information. So, how do you get some trousers on him?

We have a split level house so that is also a real issue with us. I have a bad ankle, knee, both hips, and an SI joint that keeps locking up. I am so impressed with Morgan. Eeker
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Starling

I'm one of the people who was forced to place her husband because of safety issues. He ran. It was around 100 degrees on the day he did it according to the thermometer owned by the neighbor who stopped him. He got past me and started "going home" with no shoes on. It wasn't safe for him, or for me, for me to keep him home.

Now that he is even sicker I realize that I probably could not have kept him home much longer anyway. I'm not physically up to doing that kind of caregiving.

My experience is that the people who succeed in keeping their LO home do it because there are no safety issues, or they figure ways around those issues in time. In addition they have help. Either paid help, or family help, and preferably both. In addition, the caregivers who succeed in keeping their LO's home to the end also have found a way not to be totally isolated with that LO and with no access to the outside world.

No one succeeds in keeping their LO home to the end without help.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: lurk

Cathy, I just wanted to tell you that I thought your question was a good one--about the tradeoff of time--changing one activity (entertaining) for another (caregiving). I wondered that also.

We have to climb stairs to get to the living area of our house, and then everything is on one floor. A lift will be in order at some point--for me, probably.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: C.Traill

I think it helps to look at the decision points in LO care through the stages. Safety seems to be a big one. Maybe there is a pro's and con's list somewhere,
For the most part I think I'm making the best choice I can for us, I don't know how to do it differently. Starling I appreciate your reflection, I just don't have the strength to let go or the finances to place my DO well. No matter how we cope with this ... I have such sadness. I just accept this for now.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Cathy J. M.

[/QUOTE]

Lurk, thanks for the kind words but we're not quite there yet. My DW is a solid stage 5 but completely functional, with guidance. Therefore, these later stage threads scare the h--- out of me. I'm not sure how I will handle things. We have a 2 story house so that could definitely be a problem in the future if I try to keep her at home.

Bob Cool[/QUOTE]

Bob, I'm at about the same place you are -- though our space problems are different -- tiny cabin with one step down that we might be able to replace with a ramp.

Quite a few people manage with two-story houses by putting a bed downstairs. It may look a bit odd to strangers, but family and friends get used to it and hey, if we're not through being embarrassed by stage 6, we've got bigger problems! Smiler
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Morgan R

quote:
Originally posted by lurk:
[QUOTE]


This thread has been very educational, hasn't it? C Trail thanks for the thread. Morgan thanks for the enlightening information. So, how do you get some trousers on him?

OK, I knew the trouser question would come next. As my husband can no longer walk, I bought the champion light weight jersey pants with the elastic waist. I measured 3 inches above the crotch, I cut them straight up the back in the middle all the way through the waist band, I then started at the opening and cut both sides in a half moon circle up to the pocket area on each side, this leaves two large flaps of material on both sides.

This method cuts the back out of the pants, leaves enough at the crotch to tuck under and you then pull the sides around at the waist to the back, tuck the sides under him and he looks well dressed, no one knows the difference. You are able to dress him while he is still seated.

I made sure to buy the x-large pants where he is normally a medium so I would have a lot of material to work with to bring around the sides.

I bought 3 button shirts from the department store, cut them straight up the middle and sewed velcro down the back because he will not lift his arms to put a shirt on him.

I bought one of the puffer jackets larger than he normally needs, cut the shoulder seams on both sides and velcro to fasten.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: JAB

quote:
So, how do you get some trousers on him?

Check out places that sell adaptive clothing, such as Buck and Buck. Many of our caregivers swear by them ... I've just made my first purchase and been very impressed.
http://alzheimers.boomja.com/C...7s-Patients-384.html

We talked about techniques for changing bed-bound loved ones without special equipment a while back, on the Caregiver forum:
http://alzheimers.infopop.cc/e...=948304653#948304653

My husband is stage 6e, not terribly steady on his feet any more due to parkinsonism cropping up a year ago, but he can get around if we walk veeeeeeeery slowly. He still goes with me whenever I run errands. He's much better able to communicate than one might expect from the level of help he needs with ADLs and his "physical" stage, and is very sweet-tempered and loving. And, thankfully, the incontinence comes and goes, and mostly what messes there are are in the bathroom. He's only needed 24/7 care for five-plus years.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Dorinne

MorganR,

You are an amazing wife, caregiver. Where there is a will there is a way. Wink

Bless you.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Morgan R

quote:
Originally posted by Starling:

My experience is that the people who succeed in keeping their LO home do it because there are no safety issues, or they figure ways around those issues in time. In addition they have help. Either paid help, or family help, and preferably both. In addition, the caregivers who succeed in keeping their LO's home to the end also have found a way not to be totally isolated with that LO and with no access to the outside world.

No one succeeds in keeping their LO home to the end without help.


ABSOLUTELY CORRECT. I could not survive this without my van equipped with the wheel chair ramp, to keep me from total isolation, without the support of our daughter and her husband helping me get him out of bed each morning, without the help of his sister to sit while I go to the Doctor or on errands, and without my two sisters for all the in between stuff.
No one can do this without a village of help.

Still, I am the ONLY one who does hands on care for him.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: pistons58/Kathy

quote:
Originally posted by C.Traill: Starling I appreciate your reflection, I just don't have the strength to let go or the finances to place my DO well. No matter how we cope with this ... I have such sadness. I just accept this for now.

C Trail,
I can so relate......I moved back in with my parents to help dad take care of mom.....the expense of other options is CRAZY!!! Plus I feel (even tho mom is "clueless") it's best for her to spend her remaining days in her own home and to say the least - having mom home with dad is a godsend - even tho it is draining him.

Keep doing what you do!!!!
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: JAB

quote:
JAB, my method for the trousers is so much cheaper.

I'm sure it is ... if you happen to be a good seamstress.

$30 for back-flap pants that are very durable and good-looking seems like a reasonable price to pay for not using my fingers as pincushions. Big Grin

They hem to specification, put in name labels if you need those, etc, no extra cost, and have a great return policy.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: C.Traill

I check this site morning and night. reassured by you all being here.
Bedtime, breathing easier.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Jim Broede

You are amazing. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Morgan R

quote:
Originally posted by JAB:
[QUOTE]So, how do you get some trousers on him?

Check out places that sell adaptive clothing, such as Buck and Buck. Many of our caregivers swear by them ... I've just made my first purchase and been very impressed.
http://alzheimers.boomja.com/C...7s-Patients-384.html


JAB, my method for the trousers is so much cheaper. I bought two pair of the trousers from the buck N buck and they are very expensive,this way you can have many more pair and they look just as good, really more comfortable than the ones buck and buck offer.

Not knocking the buck and buck at all, I still order things from them, just ordered him some of the wide house shoes, but for the trousers the self method will offer you more. The jump suits that they sell were a blessing to me when my husband would remove his incontinence wear at night. that got us through a very difficult time
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: lurk

It sounds as though she had a terrible experience in the hospital, but what, exactly was the cause of death?

You are obviously going through the guilt stage of grieving as well as some other stages also probably. Yes, get counseling. It will get better, but you need some understanding and support.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Rkg

quote:
Originally posted by paula camp:
Hi, my mom died 2 mths ago with alzzeimers.


Paula, I am very sorry for your loss, but I do hope you know that nothing you did caused your DM's passing. Seriously, When our time is up, it's up, despite how the actual end came. Please seek support and help to get thru your feelings. Your Dm is in God's loving arms, I hope you find comfort in that.

As lurk said, we don't know how your DM passed nor her age or how long she had AD, but I hope to be the voice of reason. Your Dear Mother had a terminal disease as do our LO's there is only so much we can do.

But the biggest gift we can give our LO's is our love and caring. I am pretty sure you did just that! Please be kind to yourself, you deserve that! Loving and Caring for someone with this disease takes it's toll on the strongest of people. Remember your DM loved you! And wouldn't want you to suffer these feelings.

May you find comfort in knowing you did everything you could.
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: paula camp

Hi, my mom died 2 mths ago with alzzeimers. She went into the hospital walking, running and eating. They killed her with antyphscotic drugs within 5 weeks and restraints. I cannot forgive myself for not taking her out of there as I feel she would be alive today. It there anyone out there feeling like they have also let there loved one down. I cannot sleep and am wrought with guilt. Thanks Paula
Anonymous
Posted: Tuesday, January 17, 2012 4:56 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by paula camp:
Hi, my mom died 2 mths ago with alzzeimers. She went into the hospital walking, running and eating. They killed her with antyphscotic drugs within 5 weeks and restraints. I cannot forgive myself for not taking her out of there as I feel she would be alive today. It there anyone out there feeling like they have also let there loved one down. I cannot sleep and am wrought with guilt. Thanks Paula


You didn't have a crystal ball -- no way to know what would happen. You made what you believed to be a choice that would give her the help she needed. If you hadn't sent her to the hospital, she might have had another terrible problem and you'd be feeling guilty about that.

I'm not sure how to get over this kind of terrible feeling. I think that since you can't sleep, it would be a good idea to start seeing a counselor. Another option would be to talk with a minister, priest or rabbi. Find someone who will keep everything you say confidential, and who is understanding, accepting and caring.

Of course, stay in touch with us too. Just about all of us know how it feels to worry that we made a wrong decision for our loved one, and to feel guilty even tho we did the best we could.
 
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