It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board

Need another opinion


Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 12-23-2013, 03:58 PM   #1
rufous57
Senior Veteran
(female)
 
Join Date: Mar 2011
Location: Western Washington, USA
Posts: 764
rufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB User
Need another opinion

My MIL is in what appears to be later stages of dementia. It is hard to say because her regular physician never referred her to a geriatric neurologist. She has no idea what time/date/time of year it is; she no longer necessarily recalls old friends/ our kids; people she's just met. She is beginning to be incontinent at least as far as urination goes and although she eats, she is losing weight, 73 pounds. We had her in Assisted Living with the maximum number of services, plus an additional private caregiver 12 hours everyday. Her husband(my DH's stepdad) just recently passed away - Parkinson's Disease, plus what appeared to be some form of dementia. It is awful, but when he passed, he was bedridden, she often lays in bed with the sheets over her eyes and that was how it was when he passed away. The caregiver was there and tried to get her up and out of the bedroom. She was very confused and could not comprehend that he was gone. We have since moved her to a Memory Care unit with 24/7 care and the difference in her is striking. She now lays in bed all day, with no attempt to want to dress or groom; she won't even put in her dentures. When we visit, she startled awake and then got all agitated; she claims that people are out to get her, she hates all male attendants and claims they are giving her the "eye". I asked the head nurse if she was taking all her meds as I thought her behavior has taken a definite downturn. She kept saying she had to get out of there, that they won't let her go to the "front room"(that's where the entrance to the building is.) She says she hates the place, hates us for putting her there. DH is very distraught. My question is regarding her husband's funeral. I am of the thinking that she should not attend the funeral; it will only confuse and upset her if she's having one of those days. I should also say that while she was in the Assisted Living place, she laid in bed there too, but now the attendants are encouraging her to get up and get out into the main rooms and she is resistant. DH thinks it's because she isn't as far advanced as some of the other patients, I suspect it's the opposite but my main concern is the funeral. Thanks for any suggestions or advice. Ruth

 
Sponsors Lightbulb
   
Old 12-23-2013, 09:25 PM   #2
Gabriel
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,249
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Need another opinion

Fufouos, I was in much the same situation as you are now. I will explain why later, but I did not take Mom with us to Dad's services. Like your Mom, she was in the room when he died and she had no awareness of what was going on. I have never regretted that decision.

I learned a few things as I went through Mom's Alzheimer's and Dad's Vascular Dementia. First, I learned they were worse than I thought. When familiar with a routine, they do much better. When that routine is broken, for whatever reason, you see the true effect of the dementia. She no longer has her husband and she is in a strange place. She had no routine and no past memories to fall back on. Each moment of the day she has no idea where she is, why she is there, or who those people are. A care giver winks or smiles and they are flirting. She wants to go somewhere other than where she is. She wants to be somewhere that she knows and understands. You and I know that confusion is in her mind and we can't fix that. It sounds like she is where she needs to be. The staff needs to keep encouraging her to participate. She may refuse but she may eventually participate. Know it is going to take a long time for her to acclimate to the new routine. Be patient with her. You may want to discuss her situation with her doctor and see if there is something he can give her to lessen her anxiety during this time of transition. It would be beneficial to her.

The other thing I have learned is that we can not expect them to be our normal. Dementia affects every part of the brain. It is not just the memory. It is also the ability to socialize, have good judgement, communicate effectively both in understanding what is said to her and being able to express how she feels, and her ability to connect with others. They will become paranoid, misinterpret what they see and hear, and have no concept of what their actions do to others. This is not intentional or something they can control. It is just the way their damaged brains work. Some will strike out and some will hide out. It is up to us to see their world and make the necessary adjustments because they can no longer understand our world. We can not demand normal socially acceptable behavior from them because they are incapable of giving that.

So for these reasons, when in your same situation, I made the decision to leave Mom in the memory unit and not take her to Dad's services. She would not have understood what was going on and would not have been capable of functioning in such a setting because it was so far outside of her routine. Beyond that, she would not remember the events. I could not expect her to act "normally" because she was incapable and I decided it was in her best interest not to put her through the stress and anxiety of not knowing where she was or why.

Watching a parent at this state is disturbing to many. You so want to fix what is wrong... you want your Mom back! Denial is a comfort until you can deny no longer. I remember hearing that Mom nor Dad was "that bad" but in reality they were that bad and the locked unit was just where they needed to be. Mom wanted out as long as she could say it. As I said before, I realized she didn't want out of the memory unit. She wanted out of the confusion that resided in her head. I couldn't give her that but I could be sure she was in a safe place that was best for her. Some have a difficult time not doing what Mom says. That's a tough one. But eventually we have to realize that Mom needs us to do what is best for her, what she needs, even if it is not what she wants.

So I agree with you. If you feel that she is not capable of understanding and cooperating then it is best she stays where she is. If she was able to understand and cooperate it would be different.

Love, deb

 
Old 12-24-2013, 09:50 AM   #3
rufous57
Senior Veteran
(female)
 
Join Date: Mar 2011
Location: Western Washington, USA
Posts: 764
rufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB Userrufous57 HB User
Re: Need another opinion

Deb, I am so thankful for this forum and for your response, I cannot thank you and everyone else here enough! That makes sense that we did break her routine or comfort zone by moving her. And with no routine, we are left to see her dementia as it really is. This is hard for us, especially my husband. His older brother was here visiting from hawaii, and he is in denial of it as well.

Were your parents in the same facility when you moved them? Assisted Living was not an ideal solution for either my Mother in Law or her husband, for different reasons. But my husband didn't want to separate them(for all the good that did)

You hit the nail on the head saying that those of us in this situation want to "fix' the situation. This especially applies to my husband. He wnats to fix this situation, but alas, there is no fixing this. And especially where you say your mom wanted out of the confusion she was in, that makes perfect sense. I printed out your reply and showing to DH. Thanks so much. Ruth

 
The following user gives a hug of support to rufous57:
scorptired (01-03-2014)
Old 12-24-2013, 11:58 AM   #4
Gabriel
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,249
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Need another opinion

Ruth, my Dad was diagnosed with Vascular Dementia in 1998. Unlike Alzheimer's it does not follow a steady progression. He stayed the same for a long time and would then take a sharp downward turn related to cardiovascular events such as a heart attack or episode of A-fib. Mom, we knew something was going on a few years before but it was 2006 when she was formally diagnosed with Alzheimer's. By the time of her diagnosis, her inabilities were about the same as Dad's though different.

Dad was easy, an accepting gentle soul. He did well at home. Mom on the other hand fought with every ounce of stubborn determination she could muster. This created a bad situation which forced the move to Assisted Living. Yes, they both went together and it was not a good fit. They might as well have been at home except somebody was taking care of medications and a bit closer to intervene when there were problems. It was too big, they were too isolated, and did not have the hands on interventions needed. Dad started having delusions after an attack of A-Fib. He would wander off looking for resolutions to these delusions. He was found, despite the wander guard bracelet he wore, outside of the building at 6 am, with it 13 degrees and no coat, walking down the middle of a busy highway. Lucky that another family member recognized him!!! Another day he was found in the grassy area again outside the building. So the decision was made to move him to the locked unit for safety.

Mom refused to leave him and showed herself with consistent southern hissy fits! We decided to keep them both together and they both went to the locked unit together. At that point, I will say, that Mom probably needed the smaller more hands on unit more than Dad did. He just needed another layer of safety for wandering. Mom was healthy, ambulatory, and verbal, the picture of good health!... but so very very confused that she could not function in the big wide world.

It is not all about how they "look"! It is about what is going on in their damaged brains that is important. We have to stop thinking of Dementia as just memory loss. It is truly brain damage!! If someone had a stroke and lost the ability to walk we would not tell them to just get up and walk. So someone with brain damage which affect their ability to relate to their world can not be expect to function normally within that world. We can not just look at the outside to see the illness, we have to know the inside.

Yes it took us several attempts (a year at home, assisted living, and then the locked unit) to find the right fit for Mom and Dad. There is nothing perfect in this disease. We just do the best we can, in the moment, with what we know. When we know more we do different. This disease is ever evolving and we have to evolve with it. What worked today may not work tomorrow, or didn't work at all yesterday. Also know that not everybody is the same and what works for one doesn't work for another. This is what makes it do very difficult.

Throw in the unwillingness to accept the reality of the disease and wow! We do have to get past our own fears. Acceptance is so critical to dealing with this disease successfully. We can not fix this disease. No matter how hard we wish it was not so, this is a progressive disease with no cure or effective treatment. What we can do is to make it the best we can withing the reality of the disease. We can find the right fit for our loved ones based on the reality of their progression. We can enjoy moment with them. We can brighten each day with our smiles and love. We can remember that they are in the moment and that is where we need to stay with them. There are joyful memories yet to be made if we just take the time to look for them. There is time for repairing relationships, letting go of old burdens, and making up for regrets. There is plenty of time left to love. So don't think of the negatives and push our loved ones away. Think of the positives and pull them a little bit closer

Love, deb

 
Closed Thread




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 10:18 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!