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 Finally a diagnosis... 
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Joined: Wed Apr 29, 2009 1:37 pm
Posts: 17
Post Finally a diagnosis...
My husband has been exhibiting symptoms for over nine years. He is 83 with Parkinson's, diabetes and one Nuerologist said -Alzheimer's. The last doctor diagnosed his problem as Lewy Body.
I am the only caregiver as we have no family within two thousand miles.I have been managing pretty well. but now I am to the stage where I must think about the day I cannot manage anymore.
I guess I want a crystal ball to tell me how much longer....
I would like to try to have live-in help rather than an institution. The doctor feels that I have until Fall perhaps - to move him to a new location where he can still become oriented.
I am diligently reading the forum. I also have been attending a monthly Alzheimer's support group which has given me invaluable tips.


Thu Apr 30, 2009 10:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Janice,

Sorry you've had to join us here.

Whenever I hear about MDs saying that caregivers need to place their husbands into facilities or otherwise get help, I think about how hard it must be for wives to receive and accept this news but on the other hand I'm grateful that the MD laid out the situation so clearly.

Robin


Fri May 01, 2009 1:21 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Janice,
Welcome, I am sorry for your need to be here but I am glad there is a place for you to come , during these type of illnesses all caregivers need some type of support. There is no magic crystal ball to help you see the future in fact LBD is mostly a day by day disease, sadly......I would line up my ducks for the future as best as possible and except all outside resourses you can..........Good Luck!

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Irene Selak


Fri May 01, 2009 7:47 am
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Joined: Tue Mar 31, 2009 10:26 am
Posts: 12
Post finally a diagnosis
I too am so sorry for you to have to join this forum but at the same time am so glad you found it. I have been so grateful for a place to go when times are really hard and read how others are handeling it. You are so smart to be getting everything in order . When my husband was having such a bad period and I figured this was it at the encouragement of my brother I began to look into my options. Thankfully things have gotten much better for the present but I do have everything ready for the next bout if I can't handle it. We will all be here if and when you need us. Barb


Mon May 04, 2009 9:42 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Janice...glad you have joined in and are posting. This site is so helpful with information and kind caring people.
You are wise to get your ducks in a row. I too thought I could handle this to the end...and hopefully I will...but after the last rough episode I realized I may not be able to follow through with that plan. I had to look at alternatives. I am now prepared to get help in our home and if that doesn't work out I will put my LO in a facility if need be. There is only so much we can handle...after all, we are human. First and foremost is the proper care for our LOs. My md told me I was not doing him any favors by TRYING to care for him...she told me if a terrible episode like that happened again I should call 911 and let them take him to a hospital.
Lewyland is a ugly little place ...thank goodness we have this site to vent, care and share with each other.
Good luck to you.

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Dianne C.


Tue May 05, 2009 1:34 am
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Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
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So sorry you have to deal with this problem instead of having wonderful golden years. My husband was diagnosed, probably LBD, 9 years ago. My advise is that as this disease progresses, all memory will probably be lost, and yet for brief moments it will return brightly. We do have to plan ahead, and eventually will not be able to take care of our loved ones alone. My husband is now "lost and anxious" even in his home that has been his home for 40 years. His need to see me and interact with me at all times has become draining, as I do feel a need to do house chores, computer work, and gardening for my own sanity. His daily shower has become the highlight of his day. He enjoys the towel rubdown, rash medications, armpit tickle of antiperspirant, toe tickle of putting on sox etc.His time of total attention- He cannot remember how to turn off the faucet, or where the soap on the rope is, or where the hand hold bars are. He will quite often inform me in the afternoon that he is going to go take his shower now.
I have not been able to leave him home alone, to run a quick errand, for 2 years now. Thank goodness I did find someone to come help him 3 x a week with showering dressing etc. She can now even stay overnight occasionally. He has accepted her help, thank goodness! This frees me to take care of chores, appointments and exercise. Last month I was even able to be with my out of state granddaughter for a special event!!!
If you assistance finding help, ask here-- someone will have the info you need.
Sending a hug to comfort you- close your eyes and feel it's warmth.
Di

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Di


Tue May 05, 2009 12:43 pm
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Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
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What I forgot to say is -- don't count on him becoming oriented to any new places !!! I moved the Toilet 2 feet to the right in an extension of our bathroom, 3 years ago. Now he cannot find the toilet.
The motto for boy and girl scouting is BE PREPARED. It still works.
Di

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Di


Tue May 05, 2009 1:07 pm
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Joined: Wed Apr 29, 2009 1:37 pm
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It is now four months in the new home. He has the daily/hourly/etc ups and downs. I did find someone to come in for "lunch" so I can get away a few times a month. We continue to experiment with various meds. At the moment we are fighting the battle of the "wrong" blankets vs too hot or too cold at night.
He does not recognize that he has any mental problems or unable to do simple tasks. He continues to dismantle the toilet tank. I did buy a commercial snake/auger - $50 very well spent.
We have no children of our own nor do I but I am in the situation as many of you - step children who refuse to even answer the phone. One has never been to visit in 30 years - so your words of support are gifts in my stocking... thank you .
Each day I track the "funny" of the day... yesterday I noticed the garbage can out on the street and it was empty! I cannot find our garbage anywhere inside or out. Someone up the block must think there is a warped Santa out there!


Thu Dec 24, 2009 6:25 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
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I also look for the humor in the situation. If you can't laugh, you'll soon get depressed. I find it endearing when my MIL walks around the house looking for her car keys to go home. She hasn't driven for 3 years and lives with my family! God love her! It is very hard having her here, but I wouldn't have it any other way. Hang in there as long as you can.


Sun Dec 27, 2009 3:22 pm
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Joined: Wed Apr 29, 2009 1:37 pm
Posts: 17
Post The latest today
Last night I agrees to have him walk the two Shih Tzus to the mailbox about 1/2 block away. Company arrived and I forgot he hadn't come home. It was 30 degrees and dark and the doorbell rang. Whnat a wonderful way to meet new neigbors. These two kind men had received a phone call from a neighbor several bnlocks away thaty a man wantyed a ride home. They didn't know him but called various neighbors until they found someone. He was cold and embarassed but after warming him up and giving the dog cookies - all was well.
So I learned that I have to watch which direction he walks for the mail and time him. He doesn't want me to go with him either. He was abit more open to letting hime wear an ID bracelet but I have full info on both dogs collars. Bit by bit I guess.


Sun Dec 27, 2009 6:18 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Janice,
If it were me, I wouldn't let him walk anywhere without an escort.
Sorry,
Robin


Sun Dec 27, 2009 7:22 pm
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