That’s something I’ve thought about a lot also. What would you do if you were diagnosed with it? How would you prepare yourself?
Oh honey-- let me give you a hug.
Mona Lisa Simpson, thanks for the answer. I dealt with this awhile ago. My grandmother was diagnosed with dementia. She had had many TIA’s, IIRC in the hundreds. She would get stroke symptoms(lack of speech, lack of motor control on one side). After one of these episodes she would seem to be back to normal. After so many episodes, though , she eventually was no longer the grandma I grew up with.
Mona Lisa Simpson, yes. You’ve taken care of all my questions. Thank you so much.
La Beldame, thank you. You deserve a hug, too! You’re going through an awful lot.
Hi, I used to regularly post here but stopped reading the SDMB some time ago - looking back, my last post was 3.5 years ago! But I thought I would emerge from hibernation, however, to say thanks to Mona Lisa Simpson for sharing the information on this thread. It really is helpful to hear from someone who works in the area.
I’m 29. My father, who is 67, was diagnosed with dementia this February. Dad has been through a swift decline - this time last year, he was living independently and his family didn’t suspect anything was wrong. Now, Dad’s living in residential care and has lost the ability to take care of himself. He at times has trouble recalling my name and forgets that my mother is dead. So it’s been a tough period for him and us.
My concern at this time is that Dad has not settled into his care home. He continually begs to be taken home and return to his old life. I can understand this, the need to return to familiar surroundings, when he felt safe and comfortable. With his memory so poor, it must be confusing and frightening for him to be in an unfamiliar place. But he needs to be in full-time care and I’m afraid that he’s never going to settle down and feel secure in his new home.
Mona Lisa Simpson, can you suggest any techniques to help Dad settle in? In your experience, do patients eventually take to their new surroundings?
Hi…
Im at work 12 hour days again and my computer blew up today…well when I plugged it in smoke started to come out… it seemed to work fine but that was not normal…had to wait for the bf to get off his laptop so I could do a check in and post.
I will post more tomorrow evening, inmean time Jervoise, how long has your dad been in care? Enomaj… yes multi infart just kinda zaps bits of the personality… sometimes very suddenly and sometimes… bits go here and there, one day you realize she hasn’t cheered for her ball team, or asked for an ice cream cone, or showed any inclination to do the knitting she lived for in… a long time.
Beldame…how you coping, hon?
Non-acetone… hug how’s the fluid intake thing going?
Everyone who’s struggling with caregiving… big hug goodnight I have to be up in 5 hours.
Thank you for asking, Mona Lisa Simpson. The fluid intake thing just didn’t work out for her. The Hospice nurse came yesterday afternoon, and told me she has 24 hours, +/-.
It’ll all be over soon. Hopefully quickly, and without pain.
It’s over. My grandma finally passed this morning at 9:30am.
She went peacefully, and easily.
I feel so relieved, you can’t imagine.
nonacetone, I’m very happy to hear that this day has brought you some peace and relief. You are clearly a person of great mercy and courage.
Nonacetone - I am so happy that the struggle is over, for both of you.
Thank you, niblet_head and Poysyn.
I’m pleased/relieved for you, nonacetone.
A bit like my mother - very fast decline and it was a terrific relief to get her into a care home as she had become impossible otherwise and pretty aggressive and nasty (which is NOT her normal character). Yep, it’s hard when people are asking after long dead friends and family, isn’t it? And " when is my mother coming home?" and so on.
Eek, that sounds awful for you. It’s something I worried about but oddly that has not been an issue. Does your father get to have some familiar objects and photographs from home in his room?
Mona Lisa Simpson, may I say I think it’s wonderful of you to do this thread. I have followed it with great interest and quite some sorrow, and I’m amazed at how people cope so well. Although the world is gradually waking up to it more, we all really do need more info about Alzheimer’s and other dementia out there.
Thank you so much for sharing your knowledge and experience.
nonacetone, I’m sorry for your loss but happy that your grandmother found an end to her suffering and yours.
My father didn’t have dementia, but we refer to the aneurysm that killed him as “the favor.” He was in his third bout with cancer (in as many years) and ready to go.
I’m sorry for your loss and happy that you can come here and find people who won’t freak out when you say things like that. Take as needed, etc: {{{{{{{{}}}}}}}}
Yeah, you’re not really supposed to be happy when someone dies (and you’re not, I get that), but when it is a very sick old person, most likely like my grandma, who had been extremely active and capable all of her life, and not able to see or hear or walk at the end, and they’re just waiting to die, it is a relief.
My husband and I joke about our “early checkout plan” - don’t take too good care of yourself, don’t live too long. 
nonacetone, I’m in a similar situation and know we will all feel relief when it finally happens. But the loss is still a loss, and you and your family have my condolences.
Mona Lisa Simpson, we just transferred my 93-y-o MIL (whom I mentioned upthread) to a nursing home near us. She has undergone a precipitous decline since June. Today is her third day in her new location, and my husband just had his first really upsetting experience of going to see his mom and finding her distraught and saying she wanted her daddy to come and take her home – home being the house she lived in as a little girl. (She kept repeating the address.) It was textbook Sundowner’s Syndrome.
I went through this with my mother, who was in an assisted living facility. She’d often call me and say, “I’m in a hotel somewhere, and nobody has brought me any dinner!” (the call coming shortly after the time I knew she had been served dinner). I never told her, “Mom, you’re not in a hotel. You’re in Suchandsuch Facility, and you just had dinner!” I’d say, “Mom, don’t worry. I know someone will come by soon to take care of what you need.”
At any rate, my husband seems to think he can get his mom grounded if he keeps correcting her about her weird perceptions. (He’s a very concrete thinker. I’m not sure it’s within him to find a way to just reassure her.) He has been in denial about a whole lot of this. Even though I’ve been through this with my mother, my suggestions would never work, because his mom isn’t like that, etc., etc., etc.
Do you have any suggestions or resources that might help him make peace with the situation instead of trying to fix it?
Settling In
A few people have asked about this… I am sorry, with limited access to computer at home, and working my 12 hours, I have fallen a bit behind.
There is definitely an adjustment problem for anyone faced with long term care. I consider it almost a “syndrome”. Clients often seem a whole lot worse when they no longer have the familiar props and cues that they had at home. Think about your morning. You get up, go have your morning pee, maybe walk out to the kitchen and have something to drink/eat. After years and years in the same place, there are natural cues, that once removed can cause problems. You don’t see YOUR toilet, so you don’t go, then end up incontinent. You always have your tea and toast listening to Fresh Air on NPR. If NPR is n’t on,will you remember its time to eat?
http://www.alzheimer.ca/english/care/ltcare-adjusting.htm gives some ideas.
http://www.caregiverslibrary.org/Default.aspx?tabid=173 is an excellent resourse for caregivers, I am sorry I forgot to post this earlier.
Personalizing a clients room with familiar objects helps. We had one lady who was very proud of her English heritage, we put British flags and pictures of red lions, the Queen and Royal family, various nic-nacs around the room. It worked, somewhat, at least she always found her rooms, as did a lot of others who were investigating the “pretty things” therein.
(That was in a private long term care facility,not the psychiatric hospital)
Its a very individualized approach, I have seen big signs in huge magic-marker letters. “DAD you are ok, you are in the HOSPITAL. Mom knows where you are. Listen to your nurses, we love you and will call after breakfast” and the client saw those every morning when he awoke. The kids were great, they each had days where they would call the father directly after breakfast and orient the parent a bit more throughout the day. Obviously not everyone has the time or resources for this, but these are ideas.
For people in a mid stage of dementia this is a very difficult and terrifying time. They know something is wrong, and don’tunderstand why they aren’t at home. Children may be called by their parents names,or the names of the clients siblings. This can be very difficult for the children of aging parents.
One daughter was a very regular visitor to her mother, and her mother did know the woman as her daughter. But the son lived across the country and when he visited his mother never seemed to know him, and at times had screamed and told him to get out. It was distressing for the son, and the client was always very agitated when the son came. Finally, I made a connection and asked the daughter.
Is your brother’s name the same as your dad’s was?
Yes.
Does your brother look like your dad?
No, he took after mom’s side, has blonder hair, dad was dark.
What was your brother’s nick name as a child. Was he called Junior, or Little Fred, or Freddie?
We called him Sport.
Ok, tell your mom that Sport is coming. Don’t call him Fred, which is your dad’s name and your mom knows that is not Fred. Call him by his childhood nickname.
It worked a lot better. “Sport” didn’t leave as dejected this time. His mother had by this time lost most of her verbal ability, but she wasn’t agitated as on previous visits.
Again, there is no one size fits all solution. No case is identical to others, but maybe these ancecdotes can give you some ideas.
Oh and mirrors can be very disturbing to some clients. They remember themselves as much younger than their reflection reveals. Think of David Bowie’s character in “the Hunger” yesterday I looked like this!!! How did I get old. " (Exept of course they aged at the normal rate, they just forget they are 80 not 35 or 12, or 6)
It is amazing (and kinda fascinating, to be honest) how the Alzheimers mind works. In my family, I still find some of us think that mom thinks the way she used to, just not as well. And that is just not the case. So much is built on memory and past experience, and when you take that away in fits and starts, you lose continuity and reasoning. So many times I have to remind my sibs that “mom simply cannot come to that conclusion that you want her to, not because she can’t reason, but the historical experience that is the basis of that reasoning is gone”.
It breaks my heart that I know that mom knows that there’s something wrong. And that she desperately wants to keep that a secret. I wonder how much of her day is like living a bad dream you can’t get out of, where things and people come and go and so much doesn’t make sense.