Advice for mother's care

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reachout
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Date Joined May 2009
Total Posts : 725
   Posted 1/15/2011 3:02 PM (GMT -6)   
She's 95 and in good health for her age, but within the last 6 months her Alzheimer's has progressed to the point that she doesn't always recognize me, she can't walk on her own, she needs diapers, needs to be fed, etc. She's better in the mornings, but in the evening she gets very anxious and putting her to bed is a nightmare, lots of insomnia, bed shaking, etc. So far she lives in her home with paid caregivers during the day and a family member at night. We got a doc who put her on Lorazapam for sleep and Galanamine for the Az. So far neither med seems to be doing much good but she's only been on them a few days.

The question is, is it best for her to remain at her own home or go to a nursing home? When her mind was sane she told me she wanted to be in a home when she was older, but now she actively fights any suggestion that she go to a home. I've also heard that in homes they deteriorate quickly and are not cared for well. However, in her own home it's not so easy either. She has to be watched constantly because she wants to stand up from her chair and could fall down -- she's already fallen twice. And all she does is sleep at night or sit in her chair and watch TV. Maybe a home would giver her mover variety. However, just when I'm thinking she would be better off in a home, she seems to perk up and get better. But then at night she reverts back. Plus, and this is not the key issue, but it's extremely expensive to provide private care for 16 hours a day in her home, as compared with an elderly home. Having a live-in family member day and night is not feasible.

I know it's our decision, and it's a tough one, but wondering if anyone has any advice, or has gone through this and what their experience is.

Thanks in advance.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/16/2011 11:25 AM (GMT -6)   
That's a tough decision to make and it's not an easy one that is for sure. Only you and your family can make that decision like you said. If you want to place her in a home, be sure to do your homework. Research it online and ask for recommendations from her doctor. You want a home that has no history of abuse or neglect. When I had to make that decision for my Gma, I chose an assisted living center over a nursing home. She was still able to walk, eat on her own and tend to her bathroom needs even if she was blind. So I asked her doctor where he recommended and he gave me a name of a place that he himself visited to tend to the needs of his patients. Privately owned assisted living centers can be expensive as well as the hired care takers.

When someone has AZ, they can lose their circadium rhythm. Basically they get their days and nights mixed up. Nor do they sleep that much. When they get agitated or more confused at night, that is Sundowner's syndrome. alzheimers.aplaceformom.com/articles/sundowners-syndrome/

I wish you the best and know that I have been there as well. It is really a tough, tough decision to make.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 1/16/2011 8:08 PM (GMT -6)   
Thanks for the reply, Sherry.  I feel clearer in my thinking about the situation just from posting that.  

Today I again saw her gradually lose her reasoning abilities and get into the sundown problem.  It's sad to see someone who wants to communicate but can't.  At one time she told me that she can't say the words she wants.  So we said an Our Father and she found those words to say.  But just when I think she might start being her old self, she begins acting nonsensical.  She'll want to stand, I tell her she can't do it on her own but to ask me if she needs help.  She agrees, then a minute later begins to stand.  I feel like I'm talking to a blank wall.  So I help her to stand, ask her where she wants to walk to, and she tells me she doesn't want to go anywhere.  So I ask her if she wants to sit, and she does.  This was my day for 3, 4, 5 hours in the daytime.  Then at night as soon as she goes down she begins shaking the bed wanting to get up.  She's on sleep mess now which seem to be helping a bit, but in the morning she now begins shaking the bed and removing her diapers.

I now realize she is more than I can handle.  She needs professional help, so the problem will be how to move her to a nursing home in the midst of her protests.  I'm a bit hopeful in that today she told me that material things are less important tom her now, and she wants to go to her home.  I don't know if she meant that she didnt think she was in her home, or if she was ready for heaven.

What hurts is knowing this lady had a sharp mind her whole life, and took care of several family members in her home until they passed away.  But they didn't have altzheimer's.  The more I learn about this illness I realize just how awful it is. 

Thanks for listening /reading.
Age: 66
Pre-surgery PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Post-surgery PSA one year of zeros.
Continent right away.
Viagra and other pills only gave me headache
Trimix working great!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/16/2011 8:36 PM (GMT -6)   
I know this condition is such a horrible thing to have because it affects not only the person who has it but their loved ones as well.

My Gma would also tell me she was tired and she wanted to join Gpa in heaven. She passed away a year ago at the age of 90, she got her wish. She was my rock as I was growing up and she was always there for me when I needed her. I am still grieving for her but I am happy at the same time because she is no longer suffering. My Gma would get majorly confused and talk nonsense but one time she asked me to give her a shot to put her to sleep (like how you put a dog down). I had to tell her that I can't do that because I would get arrested! :) She was also at a loss for words and had a hard time making conversations. I think that is probably the hardest thing to cope with along with the confusion.

Your mother may protest and not want to go to a home, but you have to think of her best interest as well as your own. I think that as long as you and other family members keep an eye on the situation at the home, go visit frequently or take her for outings (if you can) that it can help with the transition along with knowing she is still loved.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 969
   Posted 1/17/2011 12:20 PM (GMT -6)   
When my mother feels insecure, she will say "I want to go home"...there is a LOT of insecurity that goes along with AD. They are very confused. After 7 years of watching my mom go through her AD journey, she is now in assisted living. In order to keep her there and not go into a nursing home, we, me and my two sisters, are constantly there to help out. Mom doesn't wear diapers, but does have pads in her underwear because she occasionally does have accidents, or simply isn't cleaning herself well. We are there every night to be sure she changes her underwear and we wash her bottom. This isn't required in assisted living, so we make sure we are there to help. We pick up her clothes, help her get into her nightgown, and put out fresh clothes for the next day because otherwise my mother would wear the same thing over and over. I am not trying to talk you out of assisted living, just helping you to understand the level of care. My mother is in a 5 star facility, the top rating there is and one of my sisters is a registered nurse and works there, from 3 to 11, although she works on another floor. You just have to realize that once your parent is placed, the work is not done. It is obvious how much you love your mom and want the best for her.
I wish you well
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


saturngirl
Regular Member


Date Joined Feb 2003
Total Posts : 28
   Posted 1/17/2011 6:13 PM (GMT -6)   
I also have a Grandmother age 80 that was just recently diagnosed with Advanced Dementia/Sundown Syndrome and hers is progressing quickly however she still knows us she just sees people we don't and swears she eats and she doesn't.She now lives in a assisted living nursing home and is in the "Locked"unit for Alzheimer's Patients.She is not happy there but she gets great care there are fewer patients and more nurses for the patients on this hall.They take them to the doctor and have many activities for them to do and a separate dining room.This is the best place for her and affordable they take her social security check.It is a hard decision to make and My Mother&Brothers had a hard time making it and one morning i got a call at 6 am that she was outside screaming someone was trying to kill her(it was the "men"she was seeing that weren't there so needless to say we got her to the Emergency Room and The doctor made that decision for her that she would never go home again.So check out Assisted living places with locked floors for Alzheimers Patients,Hope that helps and Good luck!

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/18/2011 4:30 PM (GMT -6)   
You might want to consider a med adjustment. I am only suggesting this, because I know from (sorry mods) medical training AND personel experience that Ativan can actually make the person worse with elderly and esp ppl with Alheimers. My grandmother was way worse on it. After her recent attack, where I was actually being beaten, and strangled, I had to render 911 for aid. I declared Alheimers so police would not hurt her. Lucky me, she tried to attack me again, but the police officer (one of them) took a few blows (LoL) for me. It was determined she needed a med adjustment and was sent to the hospital where she attacked more people (notice a theme lol) and landed in the physc ward and undergoing a med adjustment. Seriously, they figured out the Lorazepam (generic is Ativan) was the thing doing this to her. So you really might consider asking for your LO to be admitted to undergo some med adjustments
Don't Care Bout Nuffin No More, Guess I shouldnt even be in this world

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 1/24/2011 2:41 PM (GMT -6)   
Thanks to everyone for your kind suggestions and advice. We finally made the decision, as a family, that a nursing home can care for her AZ much better than we can at her home. She is beginning to get agressive and fight the at-home caregivers, causing her more injury. On a positive note, the Lorazapam seems to be helping her sleep while not being too tired and sleepy during the day.

Tomorrow is the big day, and we are all going to the home with her. I told her that we are moving her to a temporary clinic that can give her medical treatment and physical therapy, which is sort of true. The home has doctors who make weekly rounds and physical therapists to work with them to make sure they maintain their strength and don't get bed sores. And the home is close to family, so we will be able to visit her even more often than we do now. If it doesn't work out, we'll go to Plan B or C or whatever. She shook her head that she didn't want to go, but didn't go on protesting, so I think deep inside she knows this will be best for her. Or maybe she just can't process that level of thought, especially since she really no longer knows who I am.

I feel very much at peace about the decision. Thanks again, and I willl post after we've had enough experience to know how things are going.
Age: 66
Pre-surgery PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Post-surgery PSA one year of zeros.
Continent right away.
Viagra and other pills only gave me headache
Trimix working great!

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 969
   Posted 1/24/2011 3:11 PM (GMT -6)   
I don't think you can say, across the board, what medications are bad or good. My mom's physician heads up a memory loss/alzheimer's medical center and he is a geriatrician. He has prescribed lorazapam for my mom, for anxiety and agitation with no problems. I think a physician that sees hundreds of patients with dementia has a pretty good grasp on what meds work well.
I'm glad for you, Reachout, that you were able to come to a decision along with your family, for her. Sounds like you have picked a fine facility. If it is at all possible, try to go and see her often, whether it is you or someone in the family. Bottom line, it is the residents that have family involved that end up getting the best care. This is from my personal experience, from other friends as well, and my sister is an RN at a facility.
I wish you all well

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 1/24/2011 3:41 PM (GMT -6)   
An interesting sidelight, I had prostate cancer a couple of years ago (hopefully cured), and did not tell the family (other than my wife of course) for fear it would get to my mother and upset her so much that she might not recover. Now that her AZ has progressed to the point that she doesn't recognize me, I finally had the freedom to tell my family.
Age: 66
Pre-surgery PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Post-surgery PSA one year of zeros.
Continent right away.
Viagra and other pills only gave me headache
Trimix working great!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/24/2011 4:22 PM (GMT -6)   
I'm sorry that it had to come to that, having to send her to a home. But keep in mind, even though part of her may not remember you, she is still there in some aspect. This does sound like a good facility. But like Mt Lady said, remember to go visit her often. Especially during the transitioning stage. Best wishes.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/25/2011 4:35 PM (GMT -6)   
That's nice reachout, that everyone in your family made the decision to get the best care for your Mom. It's such a tough decision, but I think you are right that deep down she knows this is the best for her. The other day I was leaving my parent's house and my Mom said to me, "My memory is going fast. If you ever have to put me in a home, all I ask is that you come and visit me." I could barely hold back the tears. Take care, and I'm sending good thoughts your way.

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 1/25/2011 5:43 PM (GMT -6)   
We put her in the home today. This was the worst day of my life. It wasn't the move, in fact, she no longer thinks much about being in her own home. The problem is the AZ. She didn't want to go anywhere, didn't even want to get up from her chair. So it was a struggle all the way to get her up, dressed, out the door, in the car, with her struggling and resisting all the way. Keep in mind she's 95, but her strength is very good when she wants to grab something, pinch, or bite.

Took her to the home with her moaning all the time. As soon as we got to the home and took her inside she calmed down and was actually in a good mood. The doctor checked her out, and except for the AZ she was in good shape. She took a memory test and failed pretty miserably. The doc said she has moderate to severe AZ and will change her meds.

She was OK the rest of the day, ate well, and was fine until the dreaded sundown syndrome kicked in around 4. She then started fighting to get out of her wheelchair, with little thought about her falling, scraping on the metal parts, etc. Had to restrain her with a little vest made for that purpose, then watch as she sat there struggling against the vest and moaning the whole time. The staff finally took her in to put her to bed but I could not take any more and we left her to the care of the staff. I have no idea how she will spend the night, or if she will fall in the middle of the night and hurt herself again.

I never thought AZ would be like this. I thought it was just forgetting things, losing memory, and peaceful in a way, because the person would not remember anything bad. But it's just the opposite in my mother's case. Not only can she not remember anyone, but she doesn't even know enough to keep from hurting herself or others, and she acts like she's trapped. I am completely out of resources now, I have no idea what to do other than to leave her to the professional care of the staff and to trust that God knows best.
Age: 66
Pre-surgery PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Post-surgery PSA one year of zeros.
Continent right away.
Viagra and other pills only gave me headache
Trimix working great!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/25/2011 8:54 PM (GMT -6)   
Unfortunately aggression is an all too real symptom of AZ. But hopefully with the change of medications, it will help calm her down. My heart just aches for you because I know what you are going thru. Hang in there, she is now in professional hands.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/26/2011 8:22 AM (GMT -6)   
My heart aches for you too. I know it must have been hard to leave her, but those folks are experts in their field. I used to work for a group of care homes, and one of them was an Alzheimer's facility. They were very caring people and had a remarkable program set up.
Hang in there and take care.

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 1/27/2011 9:37 AM (GMT -6)   
I went to see her in her new home yesterday around noon, and she looked good!  She seemed more alert, and I even wheeled her around the gardens outside.  One of the nurses said she ate well, and told her she enjoyed being there!  She also said she did not sleep well the night before, and I know she didn't, but the fact that she even remembered not sleeping well is a positive.  They are also giving her massages and treating an infected scrape that she got while at home.  It's only been two days, but I'm encouraged by seeing that they indeed can take better care of her than we could.  Thanks again, everyone, and my heart and prayers go out to everyone here going through the same issues with your loved ones.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/27/2011 9:46 AM (GMT -6)   
Well that's awesome! I am so glad your mother is adjusting to her new home. I hope she has many more of these good days. I'm sure it makes you feel better knowing you did the right thing.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/27/2011 9:47 AM (GMT -6)   
What excellent news! I'm so glad that the home is working out for all of you! Sounds like a wonderful place, and she is getting A-1 treatment. Peace of mind for all of you too!

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 2/2/2011 7:12 AM (GMT -6)   
Well, it's been a week and so far, so good. Between us an other family members we've seen her every day.

She seems to be adapting to the nursing home as well or better than she did to her own home. Her AZ is so advanced that, in reality, she doesn't really know where she is. She eats well, but is only slightly conversant, and mainly in the morning. Her sundown problem begins earlier now, around 4, after she eats. She gets tired, begins constant moaning, and can't communicate.

There are little things that are the most stressful for us. She won't let anyone put her teeth in or take them out, and even the nursing staff has decided to leave them in for now. I don't know what will happen in the long term if they are not taken out and washed, or maybe there is a sedative that will allow us to take them out.

Last night I helped a staff member put her to bed, which involves picking her up out of the wheelchair and laying her down. The way she reacted you would thinkk we were torturing her. She acts that way even if I recline her wheelchair or, sometimes, even if I wheel her around so I know it's just that sundown thing.

These little things are the most stressful to me. By the time I get home I'm emotionally drained.
Age: 66
Pre-surgery PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Post-surgery PSA one year of zeros.
Continent right away.
Viagra and other pills only gave me headache
Trimix working great!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/2/2011 7:36 AM (GMT -6)   
Her dentures need to come out, at least as much as possible. If left in too long, food particles can get stuck in there, possibly causing infections or sores not to mention that it will give her awful breath. Does she have a good time of the day where she seems more with it? Perhaps, that might be the time to take them out and clean them or if she can understand, have her take them out herself.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 3/7/2011 10:32 AM (GMT -6)   
Just a quick update.  A few days after my last post she developed pneumonia and a failing heart and had to be rushed to the hospital.  We signed DNR orders and were ready for the end but, almost miraculously, she pulled through with the help of a competent hospital staff, oxygen therapy, and IV antibiotics. 
 
She's back in the nursing home now and, other than her AZ, is looking pretty good.  Her doctor put her on Aricept, and she is much calmer now.  She recognizes family even though she can't say many words.  The home lost her glasses, so that was a mini-issue looking for an optician with a kind heart who made her a set even though it was an older prescription and she wasn't there to be fitted.  All in all, the NH was the best decision for her we've evern made.  It allows us to rest knowing she's in good hands, and we get to visit her whenever we want.  Thanks again for your support on this board.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/7/2011 4:39 PM (GMT -6)   
I'm sorry that your mother had to go thru that and you as well. But I'm glad she made a turn around.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis~GAD-Klonopin (.25mgs)~Rosacea-Metrogel/Elidel
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