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 Keeping our loved ones at home as long as possible 
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Joined: Mon Sep 06, 2010 9:28 am
Posts: 5
Post Keeping our loved ones at home as long as possible
Thanks for the encouragement to start a new tread. I'm not sure I have done this right.

Bellow is the post I RE: to yesterday. Can anyone help me with how to do this. I am SO in over my head and need help.

THANKS~!
GB


Re: "Five Questions All Caregivers Should Ask Themselves"
We just got back from an all day trip for Dr. appointments. We travel 150 miles to our specialists. Living in a small rural community, there are not many specialty professionals in our area.

I have been starting to feel very overwhelmed, and in over my head with being the caregiver for my 71 yr old hubby. I am 59. I thought I could do this....and I'm committed to keeping him at home. I know I will need help, but not sure where to start.

Today on the way home he became so agitated he was hitting the car, cursing, and yellin.....just not like him at all. Once he got it all out of his system, he settled down. He is just not having many moments of reality anymore, but way too "good" to be thinking about out of home placement.

I know that some of you have kept loved ones home all the way through this disease's progression. Please, if you are one of those poeple, please tell me how you did it, and why you felt it was the BEST thing for your situation.

So thankful for any input.
God Bless~!
GB


Sat Jun 25, 2011 11:11 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Keeping our loved ones at home as long as possible
GB, I was forced to place my husband in a skilled nursing facility last December as I was straining my back on a regular basis trying to transfer him by myself. At the SNF they use a sit-to-stand and a Hoyer lift with two people. He was often combative [still is] and that made it harder. I had planned to put him in the SNF for a week while my back recovered from an injury. After he was in there and I realized he was designated a 'two-person transfer' it was apparent why my back had been suffering and I am in pretty good physical shape, I made the very difficult decision to keep him there.

It really boiled down to my having no real choice. For me to have an in-home caregiver just sixteen hours a day it would have cost $350/day. The SNF is $240 per day and I can sleep at night. He doesn't really know he's in a nursing home. He has a large private room and I am there much of the day so he thinks I live there, too. He gets confused as to why I have to leave so often but thinks my bed is nearby.

The care is quite good there for the most part. The main thing is that the caregivers really like the residents and treat them with so much kindness and respect. He only gets two showers a week [I was showering him every other day at home] and I still do some of his grooming [when he lets me]. But these are minor things that I've just learned to accept because they don't affect his overall well-being. I help with his meals, too. He has declined somewhat physically and cognitively since he has been there but he would have declined at home, too.

It's a hard decision. It helps for me that his SNF is only 3/4 mile from our house and it's easy to make frequent visits.
Even if you aren't ready for placement, it's a good idea to look around at what's available. Look at the Medicare surveys [even though Medicare doesn't pay for long-term care they do regular quality surveys and they are available on the internet] and ask people you know who have had their LOs in facilities. Accept the fact that your constant vigilance will result in better care. Hope this helps.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jun 25, 2011 11:45 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
Shalomichs, I'm interested in this topic, too, for future reference. It is my intention to keep my dear husband Coy at home as long as I possibly can. I also recognize that might not be for the rest of his life.

So I read especially the spouse postings with great interest. One member who was determined to keep her husband at home until the bitter end was Leone. And she did, bless her heart. She has shared extensively her experiences. I haven't seen her post since the system came back up, but you can look up her previous posts.

I am going to read with interest all the responses you get. Coy is in early stage now, but I know I may face these issues someday.

What kind of help do you have now? I use an adult day health program 2 or 3 days a week, a homemaker who cleans and changes the bedding, a stepdaughter who set our pills up in weekly boxes, and a son who takes care of most yard work and home maintenance tasks. I cook far less than I used to, relying on restaurant takeout and frozen meals. I work full time, from my home, so my hours are flexible enough to do all the endless medcial appointments. Even in the early stage, I don't think I could keep Coy at home without most of these services. Even with them, I sometimes think I'm burning out. I asked his case manager about some respite care and I might plan some kind of vacation for me this year.

I don't think there is a one-size-fits-all for caregivers any more than there is for loved ones, but I believe this to be universally true: You can't do it alone! So my heart-felt advice for however long you are able to keep your husband in your home: Get some help!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jun 25, 2011 3:55 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Keeping our loved ones at home as long as possible
Yes! You have started a new post correctly!


Sat Jun 25, 2011 7:58 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Keeping our loved ones at home as long as possible
GB,
I am a caregiver that kept my husband home and I would never pretend and tell you it was easy, I had to be creative with help as we didn't have long tern insurance, I will admit to you that I made several mistakes along the way with the financial end of it that hurt me down the road but I did what I thought I needed to do at the time and I will tell you there are no special points for keeping your LO home and the question that I think all caregivers should ask themselves when they are thinking of the future, "Am I caring for my LO the way they should and deserve to be"

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Irene Selak


Sat Jun 25, 2011 8:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Keeping our loved ones at home as long as possible
irene selak wrote:
GB,
and the question that I think all caregivers should ask themselves when they are thinking of the future, "Am I caring for my LO the way they should and deserve to be"

In addition, you need to ask yourself if you are able to continue this role without irreversibly damaging your own health.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jun 25, 2011 9:46 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
GB,

When you keep your LO at home, you need to ask yourself several questions:
Is your home safe enough for your LO? Are there stairs involved? Do you have facilities that you can still get him into for bathing or a shower? Are there things in reach that he could damage or hurt himself with? Can you afford to keep him at home? How's your own health? You need a strong back and emotional strength. And, finally, are you keeping him home for his sake or yours? Are you able to admit when it finally becomes too much?

Mom wanted to die at home. And I did my best to keep her home. I kept her home far to long, according to her doctor, the rest of my family and my own doctor and mental health counselor. Yep. It got to the point at which my physical and mental health started to suffer a lot and I STILL kept her home. I'd gotten to where I stayed awake at night for fear of her falling or wandering. And then went to a high pressure job as a project manager at a major university for 9 or 10 hours a day. And it still took a hospital visit, in which we found that she had diabetes and a blood sugar reading over 600, before I felt comfortable saying it was more than I could handle.

Now, with back issues and other physical difficulties, I can't help Mom as much as I want to, but there is staff at the SNF who can help her.

The thing is I know my mom. And, as much as she wanted to die at home, she would have been the first person to tell me that I'd done enough long before I had the courage to admit it. But Lewy robbed her of her ability to recognize what she would have known 10 years ago.

And now I am less help to Mom. I spent a couple of hours today with my infant great-nephew and thank God he was good and slept a good deal of the time. Holding him, carrying him around to help him sleep, was agony. My nieces and nephews are starting to have children and they want their kids to have the same relationship with me that they had - their maiden aunt. But if I could barely hold a 12 pound child today, that isn't going to be easy. That's what I gave up to take care of Mom.

Don't get me wrong. I loved caring for her and I'd do it again without a second thought. But you need to think seriously about what keeping your husband at home will do to you and for you. You need to also talk with your own doctor about whether you can handle this without injuring yourself.

Taking care of Mom at home was the most rewarding thing I've done. But there is a time coming that you need to recognize and plan for when it will become too much. Don't take that time totally out of the equation.

Good luck. We're here when you need us.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sun Jun 26, 2011 2:06 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Keeping our loved ones at home as long as possible
GB:

Kudos to those who can keep their LO's at home. But, I believe that there is some mystique there, that keeping an LO at home is better and more compassionate than placing them in a facility. My experience with my husband, placed several months ago in an exceptional facility, is that he is sooo much better off than when I was his 24/7 caretaker. My message here is that a caretaker should not automatically assume that placement is inferior and insufficently loving and compassionate compared with keeping the LO at home.


Sun Jun 26, 2011 3:27 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Keeping our loved ones at home as long as possible
I find that I am so wrapped up in caregiving, house work, house maintenance and yard work, I forget, or just don't have the time and energy, to be a wife. I do understand Frank's frustrations and try to be compassionate but he resists almost everything, so it's a bit challengening. I "think" my decision will be made for me, when he starts getting physically combative, I can't or won't be able to do this any more. I have trouble remembering what life use to be like. It's a real downer when I go thru photos, that's when I have a good cry for myself.

We all have to decide how much we can handle, mentally and physically, and to make our own health a prioity. All the best to all you caregivers, it's the toughest job we'll every have.

Take Care,
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jun 26, 2011 7:19 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
Gail, I think what feeds the mystique is that LOs so often express the strong desire to stay at home. In some cases the caregiver may have promised the LO or other relative that "I won't put you in a home." My friend's mother is at a point of needing more care and my friend is struggling with the promise she made to her dying father.

It is very helpful to come here and see the wide range of levels of help that people employ, in the home and during placement. Seeing the reality helps deflate the mystique.

I am very glad I have always promised Coy that I will do every thing in my power to see that he has the best care I can arrange, and that I have never promised that will always mean I keep him home.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jun 26, 2011 3:16 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Keeping our loved ones at home as long as possible
wow good thinking, jeanne.. i will use that, thanks

when i was doing our trust the attorney said soemthing that really rang a bell .. she said dont every feel its bad to put him in a nursing home when the time comes for you or for him.. he will get great care.. you will be rested and you can spend every day there or as much as youd like.. having lunch and dinner etc..and the time will be quality time.. and with you rested, it might even be better time, than at home~ for both of you!!

not there yet, but trying to remember , one shoe doesnt always fit all. there are many compromises along the way, to get thru this...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Jun 27, 2011 2:15 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Keeping our loved ones at home as long as possible
My husband sleeps most of the time, he can no longer walk, and he hasn't had temper problems. For the most part, that makes it easier for me to keep him at home. I do have him on waiting lists for facilities, but they're not necessary yet. I do what freelance work I can from home, and I have a caregiver come in for a day every other week. I also have lots of family within a few miles who are great at helping me out. Because he was having trouble transferring to a wheelchair/chair/bed, we started in-home PT a couple of weeks ago. It's not making much of a difference, but it is helping a little. I do miss being able to do what I want when I want; sometimes I feel imprisoned, but then I take off for a 20-minute drive, crank up the music, and I'm fine again.

_________________
Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Mon Jun 27, 2011 9:29 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Keeping our loved ones at home as long as possible
those rides with the music blasting are life savers aren't they... and i have felt that imprisoned word, pop up a few times too.. a day with the gals.. a few minutes of peace.. goes along way...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Tue Jun 28, 2011 3:15 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Keeping our loved ones at home as long as possible
GB,
I am coming to the end of the difficult lewy journey with my Dad. His last downturn has taken everything from him and his time to pass grows ever closer. He will be 85 n July 1st. I know it must be so much more difficult when it is your spouse, but this is how I coped - to a certain degree.
Firstly, I took it a day at a time - at least I tried, because if I thought about the 'what ifs' and 'how can I', I would never have been able to cope. I know one has to plan for eventualities with this disease, but the everyday things I tried to ride along as they occurred.
I, and I'm sure so many here, have been where you are now. Up until very recently, I was being torn assunder as to whether to place Dad or not. It was at a stage where I could no longer physically or emotionally cope.
The decision was financially taken out of my hands only a few weeks ago ( a financial aid scheme for nursing home care went belly - up here in Ireland). God has now taken the decision out of my hands, as Dad is on his final journey. Dad never wanted to go to hospital, never mind a nursing home, so it was a huge struggle to come to the decision to place him.

When Dad was cross and agitated, I ignored him - went into another room, and let him cool off. I know that wasn't possible when you were driving. Could you have pulled over and let him blow off steam whilst you stood outside the car. I sometimes put on my headphones and tried (very difficult) to block him out when he was like this. He would eventually calm down, especially when I gave him his seroquel.
Practically, I researched all that he was entitled to as far as home help and nursing care were concerned. I eventually got home help for 2 hours a day, and nursing for 1 hour a day. I took breaks when people offered them - a friend would offer to take the kids for a few hours. In the beginning I stubbornly refused, but I soon learned to take all offers. A neighbour asked if there was anything she could do - I asked would she mind calling in for 15 minutes for a chat with him every once in a while. Small things - but a huge help.
I felt it was best to keep Dad at home because it was what he wanted, and, really, we managed ok until very recently when he had a major decline. Everyone is different, every situation is different. I am not being flippant when I say this, but try to go with the flow. Some days will be more stressful than others. Some days you will come to treasure, but only you will know what is right for you and your loved one.
There is great help and support here, form those who know what it is like, who have been there , or are going through the same thing. I found much comfort and advice with these wonderful people, God Bless,
Ger

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Jun 28, 2011 7:57 pm
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: Keeping our loved ones at home as long as possible
I was so happy when I found that the Forum was back...For a while there I had just given up looking for it.

I have my husband of 49 years still at home. He is 73 and I am 68. I am in good health so far. He was dignosed with LBD 6 years ago and is now on Hospice. When he is having a good day he can walk a few steps with me walking backwards and sorta pulling him along. I have a lot of trouble handling him alone and have ordered a Hoyer lift from Hospice. He is very difficult to get transferred or on the comode. He falls a lot even when I am right there beside him. I have to call a neighbor over to help me get him up. I am blessed to have my daughter and granddaughter living with me. My daughter works full time and now that summer is here Erin my granddaughter is home(sometimes) She often helps me with transfers.

I have said I want to keep Wayne home with me until the end but lately I have felt incabable of the task. I have a girl twice a week for 8 hours to help me and do some house work( $19.00 per hour). This started about a year ago when my family persuaded me to do something - put him in a nursing home or get help. Also a lady from church comes for a couple hours during the week to help too. This has been a life saver for me plus I have a strong faith and I feel God has really been a rock in these times of difficulity. Many blessings to all who are caring for a loved one at home or in a facility. Jeanie


Tue Jun 28, 2011 9:10 pm
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