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Old 01-04-2012, 01:06 PM   #1
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Would love some input

Hi. I am new to this site. My dad has been diagnosed with mild Alzheimer's. He lives alone in Oklahoma and I live in Florida. He continues to perform all of the ADL's fantastically as far as I can tell. He needs help with reminders and takes notes and also relies on me to remember his appointments. I take care of all of his medical appointment scheduling, follow ups, and medications. My dad still drives though he has begun monitoring himself a lot with that. He drives 40 miles one way twice a week to bowl on a league he has been a part of for over five years. His hearing is terrible and after a recent attempt to get cochlear implants we found that his hearing is too good. So now he has new hearing aids which seem to be helping. I'm hoping for more.
Now to my question...I am trying to decide if I should move my dad here with me. That could mean living in my home with my husband and four kids or a home close to us. My husband is on board with him being here. I went facility shopping this weekend with my father-in-law so I would know what the options are in my area should I need assisted living or memory care in the future. I'm worried that my dad won't adjust to the move but I'm fearful of his situation as he declines. He has two friends and a brother that check in on him a few times a week but even that is difficult to accomplish. He lives in a teeny tiny town and I don't know many people there. If I were to try and grant his wish of dying in his home it would require trusting a stranger to care for my dad and not having much oversight. I want to make the right decision for him and also assure the best possible care for him.
I have been told recently by several professionals that if I am going to move him (I have POA) that I should do it before he gets too bad because he can still adjust as he is still highly functional. I just don't think he will agree right now.
Thoughts? If there is information that you need to help with this, please ask. Thank you in advance for any insight.
Lee

P.S.
I am flying out to see him in a few weeks to get some paperwork together and spend some quality time in his home so I can see for myself how well things are going. I would really appreciate some help before I get there.

 
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Old 01-05-2012, 06:50 AM   #2
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Re: Would love some input

To me if you are able and want to care for your dad then the best is to move him as soon as possible, the professionals are right, he is still highly functional and will be able to adjust, it all looks good on paper right, but what dad wants and what is the best maybe two completly different things and thats where the fun begins. being the caregiver of someone with alz is a full time job, some of us have taken on that responsiblility and some of us have reconized that we can not . if he is insistent about not moving your are going to have a hard time, can you hire someone to come a couple days a week, to either clean the house or something of that nature just keep an eye on him and let you know how things are. Is there an assisted living facility where he lives. Does dad reconize that there is something wrong, If he has started relying on you to help with the bills and keep his appointments then there is probably a lot of other things that he is not telling you about. Would dad come out to your place for an extented visit just to see how things go, it is amazing how well they can cover their tracks about what they are able to do and not do. I think one of the things that is predoment is that most caregivers agree that they waited perhaps to long to move there loved ones, either into carehomes or closer to them or into assisted living. I am sorry I can't give you much advice but others on here will jump in, there are lots of us on here that have faced the same problems or are about to face the same problems, you are reaching out for help and that is a great thing, continue asking questions and you will get some great advice from the members on this board...

judy

 
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Old 01-05-2012, 09:51 AM   #3
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Re: Would love some input

Judy, you have pretty much said it all well! The best move would be to get him in a new place (with you) while he is still high function so he can have the advantage of getting adjusted before he fall further into his dementia. Yes, moves, anything out of their routine, is disturbing to a loved one with Alzheimer's. They are fearful of the unknown and after the move they do not have the long term memories to help them. Everything is new and it is difficult for them to 'learn". It is not that they get worse. It is that you see the true level of their inabilities in a new environment. Dad is now at home and he knows where everything is. In a new place he doesn't have the benefit of those memories. Yet, you know the situation is going to get worse. You know he is not going to be able to live alone for much longer. Waiting, is not going to make the move easier for him.

Then you have his desires and wishes. We all want to live at home until we die and do it robustly. But that doesn't always happen. Please know that not only is the memory impaired by this disease. That is probably the easy part. Judgement, behavior, social awareness, and so much more is also affected. It is these parts that seem to give us the most distress. We have to determine what they need, weigh it against what they want, and do what is best for them even if it is not what they want in the moment. Your job is to convince Dad that he wants to come live with you. TO spend time with the grandchildren, to be closer to you, to have his family close... they are all good reasons.

Yes, you do need to go spend some time with him and see what is truly happening. They do cover their inabilities well. They remember what they remember and they process what they receive but that is not always reality. While you are there, set off the smoke detector and see if he knows what to do. It amazed me that Mom nor Dad new to get out of the house. Instead they wandered around inside the house trying to find the fire as the house filled with smoke. That was a real wake up call. Does he eat? Mom and Dad would have survived on cereal if left alone. Containers of food in the fridge didn't register with Mom and the good soup that was there was left while they ate cereal, sometimes with spoiled milk. Yet she said they were fine. Pots were burned, medication was taken incorrectly, windows were broken and nobody knows how, Mom even broke her arm and we still don't know how. Mom swore she was able to drive but she ran over a yard statue and didn't remember it. Glad it was not a child. There were dings on the van that were unexplained. Then she was cited for a minor hit and run. She hit a car in a parking lot and just left. She didn't remember it but they had her tag number and the van had matching paint on it. So you can't trust what Dad tells you. He is telling you what he perceives and remembers and that is only as good as his cognition.

It is possible but very difficult to keep a loved one with dementia in a home when you are so far away. I have a friend that has done this but it is extremely expensive and you are not assured that is it working well. She has had problems with theft and ends up "going home" consistently and repeatedly just to make sure everything is ok. After the fact her comment was... "I would never do that again!". She is using an agency so there is a constant change of personnel. I myself tried it for a year. I had an amazing lady that was honest and dependable. Yet I still spent about half my time at home with Mom and Dad.

Just know it is not going to bet better and the sooner you set up a situation that will last into the future the better

Love, deb

 
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Old 01-05-2012, 12:28 PM   #4
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Re: Would love some input

As your father is still able to drive etc is there a retirement facility in your area that also has a unit for alz sufferers? My mum moved into an assisted living facility and was then able to move into the secure unit when she needed to. She sounds like your dad. Happy, fit and able to look after all her personal needs but loved walking and as her memory deteriorated further...kept going one day...hence the security move. I agree...the move needs to be made soon and because you would like him to be close to you and his grandchildren.

 
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Old 01-05-2012, 12:42 PM   #5
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Re: Would love some input

I am also new to this, but I'm struggling with the promise issue as well. I've always promised my mother I would never put her in a home, but, unfortunately, it's coming to the point that we are going to have to. I'm also very scared of how well she will adjust. I agree, though, if you do decide to move him, you should definitely do it while he is still able to adjust fairly well. I wish you luck and hope you can come to the best decision for your father, yourself, and your family.

 
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Old 01-05-2012, 01:22 PM   #6
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Re: Would love some input

Thank you all for your replies. I was pretty sure that moving my dad was what should happen. Just wanted to see if I was over thinking or overreacting. There is one nursing home in his town and it is tiny and not great. Plus, there would be no one there to go visit and that is not what I want and I know he doesn't want that. I never promised not to put him in a facility but I know he does not want that. As far as hiring someone to come into his home, he has stressed again and again he does not want someone in there. He is convinced they will boss him around and sit and do nothing. While I don't think that will happen, I'm reluctant to talk him into that and again, no oversight. Sigh...
I talk to him at least 4-5 times a week, sometimes more. Depends on what is going on really. At least once a week I tell him that I am still waiting to hear what he wants done when he can no longer live safely at home. I tell him I want to do my best to honor his wishes. And I tell him we would really love for him to be closer so we can spend time with him. He was in the Korean War and so I also tell him that the kids would benefit from his experiences. He was a superintendent at 11 schools in the past and has a great deal of historical knowledge. All things he could pass down to my kids.
My husband's dad loves to go fishing and my dad said he had to give it up for fear he wouldn't be able to get the boat in the water, maneuver it, or get it out. So I tell him he will have a fishing buddy.
He has an appointment tomorrow with his primary doctor and I've asked the doctor to please explain that he cannot go on living alone. I'm hoping my dad will listen to the doctor and respect his opinion. There will be a 2 week period between the appointment and my arrival and I hope my dad will have some time to really give it some thought.
Again, thank you all for your input. I have 3 other siblings. We are scattered all over the place and the closest lives 6 1/2 hours away. This is not a good long term solution in my opinion. I have been caregiving for my dad for several years and the time is coming for me to make some pretty big decisions. I'm not afraid to make a decision. I'm afraid to make the wrong one.
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Old 01-05-2012, 02:14 PM   #7
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Re: Would love some input

Trust your judgement, as you said you knew the answer before you even asked. We all have come to that point in the road when the term caregiver becomes a reality. It is easy to say that you will abide by their wishes when all is well. My mom throw a fit when I put my foot down and said that a cleaning lady was coming in, I told her that it was more for mY peace of mind, when I told my dad that my mom needed to go into adult daycare twice a week again I was the outcast for a bit, I weathered the storms mom loved her daycare and the activities they did , when my mom broke her hip and was hospitalize I used this to tell my dad that a care home was the only place mom was going.. These and other decessions on my part were all heartbreaking and not well received at first, it is still hard as we wait for placement in a demecitia unit. You know your father, you know inside you what will work, get his buddies in on it. Don,t be afraid to ask for help for any source..play on his emotional connection with your kids., and yes the fishing buddie. As deb said look for unexplained dings on the car, burnt pots,thermastate up too high, curtisns closed, house generally untidy even dirty, check out the cupboards to see that what is in there should be, no knifes in the bathroom drawers sort of thing.. Ask him anything has gone missing. My moms was so sure people were stealing from her, but she would move something and then forget that she moved it. You are a loving daughter to be so concerned for your dad. Bless you for caring enough to be evolved.

Judy

Last edited by jagsmu; 01-05-2012 at 02:16 PM.

 
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Old 01-05-2012, 03:06 PM   #8
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Re: Would love some input

Thank you for the support. It really means a lot to me to know that I'm not the only person that is going through, or has gone through this. I will check all of the things suggested when I visit. Two of my siblings believe I am making all of this up. I guess it is denial but it's hard when it really just comes down to me making decisions. On the other hand, it is a little easier, I suppose, not to have a million different ideas that are contrary to one another.
As I sit and puzzle about all of this my main goal is to do what is right for my dad and not what is easiest for me. God bless each of you during your own struggles and for taking time out to help the newbie.
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Old 01-05-2012, 03:45 PM   #9
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Re: Would love some input

hi and welcome. this is a horrid disease, but go with your gut. i think your dad needs to be by you and my suggestion is assisted living. its so hard to be a caretaker. he will adjust some how. the stress level will go down for you for the time being which means if you can take care of yourself you will be better to make decisions. only time will tell as the disease progresses. i could never be away from my mother. i was so glad to be with her everyday or everyother. it was a tough road at the end, but i was so greatful to share as much time as i could. keep posting and i give you hugs.

 
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Old 01-05-2012, 11:14 PM   #10
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Re: Would love some input

Keysey, My Mom wanted me to promise her that I would never send her to a home.... but she bought long term care insurance She swore she would never let us put Dad in a home. She told me repeatedly she would rather be in the cemetery than a care facility. She didn't make it easy at all. We trying letting them stay at home with a care giver during the day and somebody spending most nights and weekends with them. It didn't work. We were finally forced to seek placement on a quick emergency basis. It did not give us (me especially) time to truly research the possibilities. I don't think their first placement was ideal but it worked for a little over a years. Then they were moved here to a secure unit and after a rocky start it was been a blessing. I just wish each move had been done sooner rather than later.

I went through a lot of emotional turmoil when it was time to move Mom and Dad to AL. Martha and a few others can attest to that. I knew what had to be done but I also knew what Mom had said. Mom still didn't make it easy because she rebelled with everything in her but I also knew in that rebellion she was letting me know I had made the right decision. I finally had no choice but to have her admitted to a Senior Behavior Med Unit where a wonderful Geriatric Psychiatrist who specializes in elderly dementia behavior found the right combination of medications to help her reach a level of contentment was was right for her. It was a long road but I have no regrets. There is a point that we have to do what is right for them even if it is not what they wanted. This disease negates promises made when they were they were cognitively intact. It changes the rules.

What I do know is that when my Grandmother came to the point in her disease where she could no longer stay at home or be care for at home, Mom was the one that placed her in a care facility. It was not the best facility but all that was available at the time. I watched Mom care for her lovingly every day until the end. She did what she had to do even though she had promised my grandmother she would never place her in a home. So instead of listening to Mom, I followed what she did. She did what was needed which was not necessary what was wanted.... and that is what I did.... and what you will do

Just know none of us are alone in this. It is not an easy decision. We each ponder, over think, second guess, question, and rethink what we are doing. But when the time comes... we know it in our gut and we have to go with what needs to be done. I spent much of the early evening taking to a complete stranger about just this same quandary. No, we are not alone here So many are in this same position. I am just forever grateful for this board where we can support each other!

Love, deb

 
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Old 01-06-2012, 09:59 AM   #11
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Re: Would love some input

Thank you so much for reminding me again why I will do what is best. First, I love my dad and want him to be safe. Second, your story about watching your mom and grandma reminded me again that my dad and his siblings struggled with what to do about my grandma. In the end, they moved her onto my aunt's property in her own trailer. So she was able to live alone and my aunt was right there to check on her. My grandmother did not have dementia but had serious diabetes and glaucoma and on and on. It was a tough decision for them and my grandmother had a difficult time adjusting. But she did adjust and lived for several more years safe and loved.
I have brought this up to my dad but he just says he is fine and they had to move 'mom' because she was sick. He isn't sick and is healthy as a horse. His latest thing is that "lots of old people live at home until they die. So will I." Or he laughs and says we can talk about where he needs to move in 15-20 years when he has a problem. Gotta love his sense of humor even as it frustrates me as I try to gently explain that there is a problem.
I did notice, however, that he gets emails from the Alzheimer's association. Not sure if he reads them but he gets them. Maybe he is hearing me but is scared to admit it. I don't want to go overboard on the explanation about what will eventually happen because I don't want him to be scared. But I do want him to listen. Even as I type that I know that being logical about this will likely not work.
This page is a lifesaver. I look forward to messages and I have gone through and read a lot of other posts. Some are beginning stages, some middle, many late. It saddens me as I read what others are going through but I thank God that there are people on here willing to share the good, bad, and the ugly. It really helps to know some of the things that could happen and what has worked or not.
My husband told me yesterday that I seem "lighter" and asked why. The only explanation I have for that is that I have found such support here and while it doesn't make it all go away, it makes it a little easier to cope with all of the decisions I will have to make and what the future will hold.
So thank you to each and every person that has replied to me and to all of the others that have opened their lives up to help someone else.
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Old 01-06-2012, 07:09 PM   #12
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Re: Would love some input

Keysey... trying to be logical with him is probably useless but you can keep working in the subject and see if you can make any headway. One of the best/worst things about this disease is that they don't usually understand that they have it. Mom has always be ok. Even in the beginning when she knew something was not right, she explained it away as depression. Even after she and Dad tried to burn down the house twice she assured me she was perfectly capable of staying at home. No matter what happened... and there were some scary times... she was determined to stay at home and knew she was just fine.

After a year of chaos trying to keep Mom and Dad at home, that last day she had assaulted her care giver in rage. She didn't like the lady "spying" on her". The lady had to quit and I didn't blame her. That forced our hand. Mom is laying in the yard hysterical refusing to move. Dad is beside himself with worry. I finally got a good friend of Mom's to slip two of Dad's Xanax in a piece of Dove Chocolate and get her to eat it. After Mom calmed, her sister took Mom and Dad home with her and my sister picked them up the next day taking Mom by the doctor and then to her house. A week later they are moved into Assisted Living. Even then.. Mom thought she was just fine! She assured us she was only staying there a week and was then going home.... That was over four years ago

Hang in there and keep working on a solution and keep typing. Knowing we are not alone and that there is support available is what gets us all through

Love, deb

 
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Old 01-07-2012, 02:04 AM   #13
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Re: Would love some input

One suggestion I have, and it is all based on scientific facts not hype. Research this glutathione it plays a important role in reversing this disease to where their faculties are more balance, you cannot put a price on this one.

 
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Old 01-07-2012, 11:39 AM   #14
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Re: Would love some input

Anything on the web, in which the first page of web sites have a buy now button, makes it suspect to hype rather than reality. Yes, this is an important antioxidant that we each have in our cells. It occurs naturally in fruits and veggies and with a proper diet we get what we need without supplements. The nature of glutathione makes it difficult for the body to absorb when taken by mouth. Research been shown benefits when taken intravenously in conjunction with Chemotherapy for cancer treatment. But like so much in nutrition... glutathione is a good thing. We all have it. But taking massive amounts orally doesn't do what we would like for it to do. I put this one in the hype category

There has been scientific study that decreased glutathione is present in the brain of AD patients. But it is also known that taking oral glutathione does not increase the levels in the brain because of the fact that it is not easily absorbed by the body when taken orally and the difficulty of passing through the blood brain barrier. So there is truth in the roll of low glutathione on AD... but the hype is in the fact that taking or orally doesn't increase the brain levels

Love, deb

Last edited by Gabriel; 01-07-2012 at 11:47 AM.

 
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Old 01-07-2012, 02:25 PM   #15
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Re: Would love some input

When dad says that lots of older people die at home, use this and tell him that you do not want that to happen to him, that you want the kids to know him better. tell him anything you think will get him to come and move closer to you,,, check out the living assist units around you and perhaps find one that has some of his interests going on, gardening, woodworking, lawn care, paino playing, anything that will be of interest,. If your siblings are in denal there is not much you can do, when you go to you dads, take pictures of things that are not right and send them to your siblings. check for over due bills that he has not passed on to you... does he take meds. sometimes it gets hard to remember to take them at a correct time, if it helps get him to change his meds to bubble packs, talk to the pharmicist about them, they were a life saver for my mom and dad. I will be thinking of you as you visit your dad and I hope ev erything will go well.

judy..

 
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