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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 Re: Keeping our loved ones at home as long as possible
Is that a true statistic....one in three caregivers will die before the person they are caring for???? That is scary, but I can see how it could happen without you even realizing it. I had NO IDEA I was as sick as I was. When the doctor told me I could have died, I was in shock~! I really have been focusing on MY health and diet, and exercise and respite.

This is not my first go around as a caregiver. I had two handicapped children who lived to be 24 and 30 years old, and required pretty much 24/7 care, and I was IT. I thought with all my "experience" I KNEW what I was in for. NOT TRUE~! This is a whole new ballgame~! AND....I finally have to realize that I am NOT as young as I used to be. I never thought about being OLD (in my mind)...but somewhere along the line, my body aged and doesn't have the stamina of a 20 or 30 year old. What a rude awakening~! I've had the biggest dose of humility of my whole life, and talk about giving up "control"....oh dear....that's hard for me, and probably a huge part of the reason I want to keep my hubby at home. I don't know how I could give up control of what happens to him if he's not in my care. I have a strong belief that the dear Lord will guide us through this part of our life's journey. However.....all the help and encouragement I get from ya'll is priceless. AND... I AM listening to what all's being said in the forum. God Bless You for taking the time to share your thoughts and experiences with me~!


Tue Jul 19, 2011 10:50 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
I got that stat from an article posted on another forum. I'll try to find the source and post it here.

_________________
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.


Tue Jul 19, 2011 11:41 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Keeping our loved ones at home as long as possible
My aunt arranged for an Elder Care Advisor (a friend of hers) to visit my parents today to talk about hiring a caregiver or placing her in a facility. My aunt and I were also present during this visit. While the advisor was there, my mom slept through part of it, then later in the visit fell backwards and hit her head, then lost control of her bladder. My dad was upset that he hadn't caught her in time before she fell and just broke down. Quite a visit for this advisor. While I'm not glad she fell, I think it was helpful for the advisor to really see what my dad is up against.

After the crisis was over, she then took us all to a care home near where I live. To my surprise, it was one that is run by a very good friend of mine. I'd talked with my dad about it several months ago, but he hadn't been ready to consider it yet.

My mom nodded her head when Dad asked her if she liked it there. It was very cheerful and clean. Two women, a nurse and an assistant, stay there 24 hours a day with up to five residents (they get weekends off when others come in to care for the residents). They have two openings coming up in a month or so because those residents are moving to a home closer to their families, also run by my friend. They have daily planned activities and full menus posted for the month.

I don't know if Dad will be ready to move her in a month, but I think he'll be more ready now that he's seen what a nice place it is. They don't have alarms on the doors now because they have no wanderers, but the nurse said they'd install them if Mom moves in since she's tried to leave the house in the middle of the night before. I like it because it's only about a five minute drive away, closer than where she lives with Dad now.


Wed Jul 20, 2011 5:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Keeping our loved ones at home as long as possible
Sounds like things went well, overall. Glad you are trying to find a place now before you have to go into total crisis mode. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Jul 20, 2011 5:48 pm
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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
I agree with Lynn.

And I agree with you, SandwichMom, if Mom falls and gets disoriented and wets herself, it was good for the advisor to see that.

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


Wed Jul 20, 2011 6:02 pm
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Keeping our loved ones at home as long as possible
I am just beginningnthis journey, all the posts are so helpful! My dad is a
WW II vet, and qualifies for some in home help. We are going to start with homemaker visits a couple tmes a week, eventually we will add bath aide, but he is not in need of that yet, in the future he can go to adult day care a few times a week through the VA. Then when he needs more his long term ins will pay 6 hours private duty per day, at that point my husband and I will move in and provide additional cares. We will still need to self pay in home help also. So that is my tentative plan that of course is contingent on how is disease affects him I plan to have several things in place to help me maintain my health and sanity. If I don't purposely do those things I doubt it will go well. Hope this helps like I said we are just starting and I am not sure
How it will all work out! Take care!


Thu Sep 08, 2011 9:01 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
It sounds like the VA is doing what it can. But don't stop there. Check with your county senior or social services. There are things like sliding scales to help you with bringing in home health aides and even home modifications. This is not something you need to be impoverished to receive. And it doesn't hurt to start a relationship with a social worker as early as you can. That social worker can also point you to other resources.

I know our parent's generation is shy of anything that might be called "welfare." Remind your dad that he has been paying taxes for decades and these services are part of what those taxes fund. Medicare.gov is also a great website, even if you don't need a lot now. It isn't just for nursing homes. There is a lot of good information for you about caring for your father and his interests.

Moving in with your dad may be a good thing, but prepare yourself for a very demanding job. And your family. This is something that will have a profound effect on everyone and it isn't always a happy one. Wait to tell your dad (if you haven't already) of any such plans. A big mistake I made was to assure my mother that I would keep her home and that she would die in her own bed. She's in a nursing home now and I have done physical and emotional damage to myself over these past years of caring for her. I'd do it again, for Mom's sake. But be aware of the cost to you and your family, in more than money, of such a move.

Be careful for yourself and your family. Lewy is very high maintenance.

Kate

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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]


Thu Sep 08, 2011 10:19 pm
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Keeping our loved ones at home as long as possible
Kate thank you for the information you shared it is very helpful! Reading what you wrote made me feel really supported and understood! I have shared my plans with my parents, as they have made their wishes known to remain at home since it is the only way they can remain together. I did though in talking with them tell them if it got to a point that I could not do it, because of difficulty managing symptoms or feeling that I along with paid caregivers are not giving them the best care, or If I physically couldn't do it that I may not be able to honor their wishes, but I would do my very best.
Thank you again for sharing with me, I feel less alone in all this, I just now need time to call and get more info for those additional services in my area!


Thu Sep 15, 2011 3:26 am
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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
I'm glad to help. Now I can tell you that there is a very special side to sharing a home with your parents at this stage of life.

If you are attune to it, and very lucky, you will see times when your dad will seem to have a foot on either side of "the river." You can see something special in his eyes and attitude. It's as if he is seeing Heaven and is not afraid of it. I am not a terribly religious person, but seeing this in Mom will be with me for the rest of my life. It gives me peace to think of it.

I hope you are lucky enough to catch one of these moments. It makes all of the work and frustration of keeping a parent at home fade away for a moment.

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]


Fri Sep 16, 2011 2:28 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
Kate, that is beautifully put, and I know exactly what you mean. Even though I had to put Dad in the nursing home, before he went, and even now, I can see that look in his eyes that you are talking about. It is indeed comforting,
Ger xxx

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


Fri Sep 16, 2011 4:45 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
Ger,

I want to tell you that there is this wonderful woman at my mother's care facility that, in times of stress (or boredom), alternates between saying the Hail, Mary and singing When Irish Eyes are Smiling.

In getting to know other residents at the nursing home, I'm learning to appreciate Mom even more than I have. And to appreciate some of those other residents.

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]


Mon Sep 19, 2011 12:07 pm
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Joined: Wed Mar 16, 2011 11:41 pm
Posts: 8
Post Re: Keeping our loved ones at home as long as possible
this section has been so helpful for me. my mom is caring for my dad and it is wearing her out. she went to elder care and has not gotten a caregiver who comes in for 3 hours once a week. But this week she has discovered that even her going outside now can lead to problems (dad wet himself, couldn't remember how to operate the lift chair and climbed over the side trying to get his pants off at the same time....). The night before he woke her up about every 1 1/2 hours.


Sat Oct 15, 2011 1:44 am
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Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: Keeping our loved ones at home as long as possible
I am determined to keep my husband at home till he dies. I have visited the care facility here, in our tiny rural community, and it is so noisy that even the head of the home told me that it would not be a good place for my husband.
my husband has been declared 100% disabled by the VA, so we are fortunate to receive their help: I have 28 hours of caregiving per week which enables me to leave our home for shopping trips and go to my book club once a month. They bathe him and take care of light housekeeping duties.
My husband has had LBD since 2006. He is 78 years old today and I am 62. He sleeps in a hospital bed. We have a Hoyer lift and a disabled bathroom with shower. At this point in time, he can get out of bed and walk a little bit and feed himself if the food is cut up in small pieces. I am so grateful for the VA's help and that my husband can still walk. When he got very sick with diverticulitis and a perforated bowel last November and I was alone taking care of him for one week, at nights too, with very little sleep, by the end of the week I could not think straight. Of course, if I simply cannot find help to enable me to sleep all night a few nights a week, when the time comes, I will have to re-think my position on keeping him at home. My husband is a very sweet person and he has urged me at numerous times to put him in a home so I don't have to take care of him. I think that it is important to leave options open and to think practically and with level headedness about the future and making the best decision for everyone concerned. LBD changes the sufferer every day, sometimes, several times a day. My husband is always exhausted, would prefer to sleep all the time, with a great deal of cloudiness in his brain which makes it impossible for him to distinguish what is really happening around him. He tries so hard to make sense of things. It is a special kind of hell to watch this wonderful man, who was so very talented, deteriorate in every way. I am thankful that we have had a very close marriage for 38 years, that he is so filled with faith and unafraid of death. I rely on prayer a lot and driving the car with the music on loud when things get overwhelming. I try and see joy wherever I can and maintain my humour. I feel mostly incredibly blessed by the love we share, the 4 outstanding children we have and the 2 granddchildren who will make their appearance in October 2012. Reading your posts, I see how amazing you all are, and the kindness and helpfulness you extend to each other. God bless you all!


Sun Feb 26, 2012 2:23 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
Juliet,
Happy birthday to your husband! It's interesting that the care facility thought it wouldn't be a good place for your husband. I guess there are no other choices where you live?
Robin


Sun Feb 26, 2012 3:18 pm
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Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: Keeping our loved ones at home as long as possible
It is the only facility that has a doctor on call and nurses on staff. The admissions person knew that my husband would need lots of quiet to sleep and there is constant noise, especially at night, with Dementia patients screaming and others yelling for attention. I have gone there to visit friends quite often in the past 30 years so am familiar with the place. This year, a friend stayed there for close to two months (for physical therapy due to a broken pelvis) and described to me the nightime "rituals" with accuracy. Not a place for anyone who needs rest.....The VA would support the entire cost for Ed's care there too, but again, I am strongly against him moving there, unless they build a quiet area!
I also like to check on my husband at night which is not something I would be able to do if he were in a facility.(I also have a baby monitor on at all times. I also know that I would be spending all day with him, every day which actually means that nothing would get accomplished at home!!! I am praying for an "angel" who would be willing and able to live in our home to provide respite at night! We shall see what the future holds! Thanks for replying.


Sun Feb 26, 2012 3:37 pm
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