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 Caring at home 
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Joined: Thu Feb 15, 2007 12:49 pm
Posts: 3
Location: South Yorkshire UK
Post Caring at home
Hi
My father has recently been diagnosed with LBD. I would really like to care for him at home once all his assessments have been completed, but everybody I speak to (friends, relatives etc) is advising me not to do it. My husband and I are self employed and I work from home. We have 2 children aged 16 and 8 so obviously I have to take into account the impact this will have on them. I would really like to do this as in my opinion the care my dad received whilst in his previous NH was not adequate . I just wondered what the opinion of people who are actually in the same situation as me was.
Many thanks.
Sue in the UK


Tue Feb 20, 2007 7:47 am
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Hi Sue,
Welcome to the LBD forums and I am glad you found us.You ask about caring for your Father at your home, well it can be done but it is a hugh commitment, I cared for my Husband at home for a very long time except for a brief stay at a rehab and 2 seperate stays at a Hospice house for respite, This is going to take time from your family and I would suggest a family meeting of sorts to see what others in the family is thinking. Do you have outside family members willing to commit to help when needed, are you able to have outside help cost wise, a great deal depends on what progression of the illness he has , if he is maintained and you educate yourself to the ins and outs of LBD I don't see a reason as to why not, oh another thing to consider is what will happen when you are off doing family things with your Husband and children? I wish you well in your decision and only you know what you are capable of. :wink:


Tue Feb 20, 2007 12:00 pm

Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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Sue I starting caring for my Mother in law Jackie in August of 06. in the beginning it was not to bad. But it has gotten worse and we are now having a hard time with her. we can't get her into the bath for showers any more and LBD patients don't sleep very well and night time get real hard to handle when you have 3 or 4 night in row that you are up with them.

I have a 13 yr girl and 16 yr old boy. the boy seems ok with most of it. The girl is definently affected by me not having more time to do things with her. Since christmas I have had very few times that i could leave the house and go out. It now take 2 people alwasy to handle Jackie. Since there are 3 of us caring for JAckie 2 of us are always at home. Me, my husband, and my mom all tag team with JAckie.
It is your choice and I think even though it is getting hard now my husband has enjoyed the will cherish this time he had with his mom in our house. it does get tiring and I think we are all spent now and we know it is time for a nursing home.
Hope this helps good luck :)

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Phyllis
taking care of Jackie 74 years old mother -in-law


Tue Feb 20, 2007 2:31 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Post care at home
Sue,

Caring for a loved one at home is one of the most difficult things I have ever seen someone try to do. The heartache, the fatigue, the loss of freedom to simply go to the grocery store or out to a movie, the constantly giving up of your life for another -- these things sound noble to bear, but after weeks and weeks of it, it can destroy your own health and well-being. It will wear you down to the bone. You have kids that need you to be there for them, but please believe me that you will give away so much of yourself in caring for your sick loved one that you will not have enough left to give to your children. My own mother tried to care for her father, and she made a heroic effort at it, but in the end she only used up all her emotional and spiritual resources for him and had nothing left for us. And then, despite all her efforts, she eventually had to place him into a nursing home anyway because she hurt her back trying to lift him.

Grandpa is now in a nursing home and receiving good care. We make sure of it. Someone from the family visits him every day, if only for half an hour, and we bring any concerns immediately to the administrator and demand that the problem be corrected immediately. The staff know that at least THIS man's family is looking out for him, so they treat him exceptionally well.

Randy


Wed Feb 21, 2007 1:30 pm
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Joined: Sun Dec 03, 2006 12:51 am
Posts: 31
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My Dad made the decision and arrangements today to bring my Mom home next week. He met with the Hospice nurse, the nursing home and her sitter and they feel that now is probably the best time to bring her home. The family had made the decision that we wanted her home at the end. I have such mixed feelings. I'm happy to see her coming home. I think this will be better for my Dad. I know it will require more help from my sisters and I at night and on the weekends because he cannot care for her alone. I am willing to help more to have Mom at home. I'm just feeling overwhelmed thinking about how I will juggle more time when so much of me has been removed from my husband and children already. Is that selfish thinking like that? I also have mixed feelings because I want to be happy about her coming home but I know it is only because she doesn't have much time left. Just venting.


Wed Feb 21, 2007 10:21 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
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Dear CMiller - What you are feeling is completely normal. Both my Dad who had Alzhiemers and my Mom who was legally blind and diagnosed with LBD came to live with my husband and I - 5 years ago. I was fortunate that I could quit my job, it was a tough job changing places with my parents but I dont regret one minute of it. My Dad passed away 3 yrs ago and my Mom 3 weeks ago. She was on hospice (also had pulmonary fibrosis), after Dad died she went downhill quite rapidly, then when the pulmonary fibrosis was diagnosed last June 06, her LBD escalated also. She needed more and more help during the day and overnite. Can you afford to get some help in in the late evenings. We had a 7pm to 7am shift that came (really expensive, like 15-20 dollars an hr), but luckily Dad left Mom enough money to help with this. If you maybe got someone from 11pm till 7am, then it would give you all a break. Just a suggestion. The USA needs to start doing something regarding medicare and medicaid to take care of the elderly and help out the families with no place to turn with dementia patients. I know this is long but I felt the need to tell you that it will be ok with your Mom at home, You will work things out. Again as hard as it got, I am glad I was able to be with Dad when he left this earth, and also hold Mom in my arms as she went to meet Dad and her maker. God Bless and good luck.

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Shelley, Lills daughter, taking care of Mom for 5 years now......


Mon Feb 26, 2007 7:18 pm
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Joined: Sun Dec 03, 2006 12:51 am
Posts: 31
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Thanks Shelley. You are so strong to continue helping others after experiencing a loss so recently. It was really rough this weekend but the change that it made in my Dad made it all worth it. He was so happy to see Mom come home. He just felt so guilty having her in the nursing home. Once we all become experienced in changing Mom by ourselves I think it will be easier. It took two and three at a time because we just didn't know what we were doing. It is a lot easier helping than being the one in charge. My husband is a nurse and daughter a student nurse. With the help of them and our sitter I'm hoping we will be experts in no time at all. I know that Mom knew she was home. We asked her if she was happy to be home and she would smile and say yes. I think the weeknights will be easier and the weekends a little more difficult. Eventually we may need help at night but so far Mom sleeps all night other than occasional chattering for a little while and then back to sleep. If Dad needs we will just take turns staying with him at night. I am determined to do whatever is needed for the time that is left. She deserves that. Thank you for your kind words.


Mon Feb 26, 2007 8:06 pm
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Hi Cmiller,
I am so happy that you as a family was able to bring your Mom home, she knows she is home too! If a family is determined to caregive a family member , the rewards will be ten-fold I promise you that, sure there will be moments but if you approach each problem had on and learn you all will be fine and you now have your Mom where she belongs!
Good Luck! :)


Mon Feb 26, 2007 8:16 pm

Joined: Sun Dec 03, 2006 12:51 am
Posts: 31
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Irene, Shelley:

Everything is going well with Mom. My Dad is even learning to change her at night without any help. I am so proud of him. I'm just worried about him because he's back in the state of mind that it is possible for her to recover from this. The sitter and Hospice aid said that they thought Mom was gaining a little weight. She is eating much better. She has a really bad bed sore around her tail bone. I told my Dad that the sitter said that is our priority right now. If we can get it to mend then she can at least be able to sit in a wheel chair and be brought outside when the weather is pretty. He was so excited he said, "Maybe with physical therapy she can walk again". I just shook my head and said, "Daddy" and he said, "Yea, I know, but I just can't help but hope". Do you think it's possible that she knows the end is near or she just realizes how sick she is? She told my sister, "You will all be alright. I love all of you". I am just so amazed at how clear her thoughts are at times. She can be chanting or rambling, whatever you call it and then say something that blows us away. This is so unlike what I had always heard about Alzheimer's disease. Is there that big of a difference in LBD compared to Alzheimer's with the dementia part?


Wed Feb 28, 2007 11:45 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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cmiller wrote:
She can be chanting or rambling, whatever you call it and then say something that blows us away. This is so unlike what I had always heard about Alzheimer's disease. Is there that big of a difference in LBD compared to Alzheimer's with the dementia part?


That's just it - the fluctuating cognition is what makes this so unlike AD, and why people with LBD respond better (and longer) to the drugs that are so miserably ineffective in AD. Even when Cal was at his utter worst (unable to remember his own name, staggering when he walked, incapable of anything more than monosyllabic replies to questions), he'd occasionally have flashes of insight and eloquence that I just couldn't synchronize to my view of what dementia looks like. These brief shining moments in the midst of a trainwreck were what led us to the right diagnosis and optimized treatment.

Eric

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Thu Mar 01, 2007 4:16 am
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Cmiller wrote:

This is so unlike what I had always heard about Alzheimer's disease. Is there that big of a difference in LBD compared to Alzheimer's with the dementia part?

Hi ,
I think there is a hugh difference between the two, AD is a slow decline with no return where LBD is a decline and then the Fluctuations come and sometimes a LBD person can almost seem normal,
For us early on in the illness we weould have an upset of mood swing maybe every 3 months, now this was long before we knew what it was, we would get past this period and things would be normal.As time went on in the illness the mood swings became closer and closer to the point of being everyday. Then at that point the DX was made and med choices were made some being good and others not so good, by this time the physical played a hugh roll and I know not every LBD person gets the major physical end of it but my husband did, by the last yr we were fighting off constant infections more the pneumonia than UTI's, we had the swallowing issues for many months it was difficult for him to swallow many things and at times even the puree'd foods, he no longer could feed himself.
I will say that I think a person with AD compared to a person with LBD, the AD person at the end mostly doesn't rememeber anyone where I think the person with LBD does, yes my Husband mixed people up sometimes but I think that was the thought pattern more than forgetting the actual person, I believe he knew us right to the end, it was things he mixed up not people.


Thu Mar 01, 2007 10:41 am

Joined: Sun Dec 03, 2006 12:51 am
Posts: 31
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I am numb and in disbelief as I write this tonight. Mom passed away suddenly this morning. I stopped by to visit her before work around 8:00 a.m. She was rambling on. I couldn't get her to open her eyes to look at me. She rambled awhile and then got quiet. We figured she had worn herself out. At around 9:00 a.m. the sitter and Hospice aid were just finishing her bed bath. They turned her to one side and then the other and she turned completely gray. They called my sister from next door and she tried calling out to Mom. Mom took one last breath and left us peacefully. Although we knew the end was near it still does not prepare you for the suddeness of death. We are very heart broken tonight and have a couple of long days ahead of us. I am so worried about my Dad. Please keep my family in your prayers.


Thu Mar 01, 2007 10:13 pm
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Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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I am so sorry about your Mom. I am glad to hear how peaceful it was. Try and think back and remember her in her glory:)

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Phyllis
taking care of Jackie 74 years old mother -in-law


Thu Mar 01, 2007 10:24 pm
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cmiller wrote:
Mom passed away suddenly this morning.

I am so very sorry for your loss, I am so glad you did bring her home that's where she wanted to be, she is no longer suffering this horrible disease of LBD, she now is free!
Please except my deepest condolences to you and your Family :cry:


Thu Mar 01, 2007 11:32 pm

Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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I am so sorry for your loss. Thankfully your Mom passed peacefully and is no longer in distress.after her long journey with LBD.
Take care of yourself and rest in the knowledge that you did the very best you could for her.

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"Im pedalling as fast as I can!"


Fri Mar 02, 2007 8:03 am
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