Guest guest Posted March 29, 2012 Report Share Posted March 29, 2012 Teri: My husband had many of the typical symptoms of LBD: hallucinations, disorientation, sleep disorders, etc. Fortunately, his hallucinations were of the non-threatening variety in that he sometimes saw people in the room, but didn't carry on conversations with them. For a time, when I was working, the sleep disturbances were a problem. He would get up and wander around at night keeping me awake. Those symptoms passed after a year or so and getting up was generally for a trip to the bathroom. My husband was a very sweet, loving man who became even more so in the last couple of years. One of his hallucinations was that a lady was going to come and take my place in our bed. He would urge me to come to bed--we're talking 6 pm, much too early for me. He needed constant reassurance about where he was and that I was, indeed, his wife. He told me he loved me several times a day. When he didn't remember we were married, he would propose to me. He always remembered his children, my mother, even my brother who only visits a couple of times a year. His mother, who died many years ago, had been replaced with an identical mother that he thought lived nearby and always wanted to go visit. Given the way the symptoms played out with him--and everyone is different--it was not difficult to sleep in a king size bed with him. Even when he wasn't sleeping, he would generally remain quiet so I was able to sleep. In the last 3 months of his life, he occasionally became incontinent and wet the bed, but that had not previously been a problem. Whenever I would have to change his clothes and bathe him, he always thanked me for " all what you do for me. " All situations are unique with some similar components which evolve differently depending on the individual. Sometimes, it is impossible to keep an individual in their home. I was not averse to comitting him if it became absolutely necessary, but I fervently prayed it would not and I thank God every day that it didn't because my husband wanted to die in his own bed. I also prayed that he, like my father, would be spared the last stages of the disease (my father had ALZ) and he was. My stepdaughter lives nearby and would come in an instant if needed. We had a series of home health nurse visits at one time, but I was able to handle most things myself because he was never completely bedridden. Had that happened, it would have been a different scenario. It IS a scary journey into the unknown. The only way to survive is to take each day as it comes and to realize that this is one stage of life and that it WILL end at some point. My 88-year-old mother (1 year older than my husband) is still hale and hearty and lives across the street. She was not physically able to help, but having her nearby was HUGE because she had been through it and was a great help emotionally when I needed to talk. Your husband is a unique individual and the progression of his disease will be unique to him. You may well be able to care for him until the end. That's all I can think of right now, but hope it helps. Cassie To: LBDcaregivers From: tcornelius964@... Date: Wed, 28 Mar 2012 22:35:42 -0700 Subject: Re: Re: For Tania Cassie, Your posting to Tania is very hopeful and encouraging. It's not very often that you read of someone sharing a bed with a spouse who has dementia until the very end. More often than not, most aren't able to do this and the spouse ends up in a NH. My husband has been the perfect partner for me. We've been married for 43 wonderful years and he deserves all the best that I can give him. I, too, want very much to lay by his side until the very end; but have heard so much of hallucinations, delusions, aggressiveness, etc.; none of which he has shown so far. How have you dealt with these adversities. Did you have helpers and how many and how much. I'm so glad you stayed on this site to help those of us who are still on this very uncertain and scary journey. Teri Subject: Re: For Tania To: LBDcaregivers Date: Wednesday, March 28, 2012, 7:47 PM You know, that's a great idea! I'm going to suggest all of this to Mum. Neither Mum nor Dad are that great with trying new things but if it means she and Dad get some better quality sleep, surely they'll be up for it!? Thanks Cassie. Tania... > > > > > > > ** > > > > > > > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > > > say lots of stuff hasn't happened. But it's taken a fairly severe turn for > > > > the worse of late. > > > > > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and finally > > > > PDD 2012) for a few minutes and after she'd been home for a while, noticed > > > > a huge dent in the side of the oven. She asked Dad if he'd had a fall and > > > > he said he had. This is just the latest of many bad falls he's had in the > > > > past couple of years. But this time it's worse. > > > > > > > > Dad's right buttock was extremely sore/tender after the fall and after not > > > > getting any better, we took him to see his doctor (GP) on Thursday. He (the > > > > doctor) was extremely concerned about Dad's breathlessness and was worried > > > > he may have a clot somewhere. Long story short, after 8.5 hours in > > > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > > > (thank God) no broken bones but does have a damaged piriformis muscle in > > > > the behind which explains his extreme pain and that he would need further > > > > tests to determine if he has a blood clot (which can be fatal) although the > > > > blood tests were indicating that there was. Now we have to wait until > > > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > > > > > Aside from the obvious danger of the clot, the GP has advised that it is a > > > > dangerous situation whether we were to treat a clot or ignore it. To treat > > > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > > > already on blood thinners for his heart but this is way more powerful. > > > > Warfarin would probably help the clot but if Dad were to have a fall whilst > > > > on this medication, he could bleed to death. But if he does have a clot and > > > > it's left untreated, it may be OK, but could also be fatal. > > > > > > > > When Dad was diagnosed with this awful disease, I pictured him dying from > > > > perhaps pneumonia, a few years down the track. Now, and only now, I realise > > > > that the only thing you can be sure of with this disease is that you can't > > > > be sure of anything. > > > > > > > > Thanks for listening. I don't quite know what it is I'm trying to say. I > > > > guess I just wanted to put these horrible feelings into words as Dad seems > > > > to be worsening and it's heartbreaking. > > > > > > > > Tania.... > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Kate Knapp, OIT > > > University of Minnesota > > > > > > > > > You were born with certain gifts and talents. > > > In kindergarten you were taught to share. > > > The world needs all of the gifts it can get. > > > Don't be shy. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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