Mom & dementia - long...

[Deesknee]

We recently had to admit my mom to a nursing home. She fell the day we came back from WDW. Aparently banged her head. She went to the hospital, they put her in rehab. She had been becoming weak due to depression and lack of participating in life. We had hopes she would be able to go back to her apartment. But it wasn't possible. She was put on oxygen and was unable to understand how to get around with the tubing. They(the nursing home) said she was a danger to herself.

Previous to her falling she had been refusing to get help for her depression. My brother & I had great difficulty even getting her to scheduled doctor appointments. We'd help her make the appointments. We'd schedule our lives in order to take her to the appointments, then that morning she would call the doctors office and cancel the appointment.

So now, they (the nursing home) tell us she is suffering from "sundowners". She becomes uncooperative. She becomes extremely confused. The nursing home keeps suggesting we "up" her psychotic meds. They seem to help at first then she "platows". Has anyone else experienced this. I can't help but think if she could go back to not being on meds, to start fresh. Get her depression under control, maybe she wouldn't need to be in a nursing home.
Anyone? I think I need someone to confirm they are not just medicating her to keep her cooperative. But, I am willing to hear the voices of others who have experienced similiar instances.

 

[rie'smom]

We recently had to admit my mom to a nursing home. She fell the day we came back from WDW. Aparently banged her head. She went to the hospital, they put her in rehab. She had been becoming weak due to depression and lack of participating in life. We had hopes she would be able to go back to her apartment. But it wasn't possible. She was put on oxygen and was unable to understand how to get around with the tubing. They(the nursing home) said she was a danger to herself.

Previous to her falling she had been refusing to get help for her depression. My brother & I had great difficulty even getting her to scheduled doctor appointments. We'd help her make the appointments. We'd schedule our lives in order to take her to the appointments, then that morning she would call the doctors office and cancel the appointment.

So now, they (the nursing home) tell us she is suffering from "sundowners". She becomes uncooperative. She becomes extremely confused. The nursing home keeps suggesting we "up" her psychotic meds. They seem to help at first then she "platows". Has anyone else experienced this. I can't help but think if she could go back to not being on meds, to start fresh. Get her depression under control, maybe she wouldn't need to be in a nursing home.
Anyone? I think I need someone to confirm they are not just medicating her to keep her cooperative. But, I am willing to hear the voices of others who have experienced similiar instances.

There is a type of depression particular to the elderly. Does the nursing home have access to a psychiatrist? Hallucinations and psychosis are common with it. I'm sorry that you are having to deal with this.

 

[Deesknee]

yes, the nursing home has a psyciatrist. Well, a pa psyc. I have spoke to her a few times. She seems very compassionate & patient. But, I can't help but wonder if my moms condition has really progressed this quickly or if the meds they are putting her on are making it worse. I am probably just wishful thinking, hoping she will get better.

Thanks for the suggestions compassion.

Dee

 

[disneychic2]

Have you consulted a medical team that is not associated with the nursing home? If not, I would get a second opinion and not go strictly by what the nursing home is telling you. There are many fine nursing homes, but, unfortunately, there are some that are not so fine.

It very well could be the meds she is on. My mother was taken off most of her meds by a new doctor and she has felt so much better and stronger and her memory is getting better too. The main culprit was Lipitor. She still has episodes and lapses in memory, but not a many and she feels really a lot better physically. She said she'd rather die of a stoke than to go on feeling the way the meds made her feel. At 81 years, old, I say more power to her!

Deciding to place a loved one in a nursing home is such a heart-wrenching decision to make. Many people feel guilty over it. Please don't. Gather all the information you can and sit down with your brother and weigh your options. Whatever you decide, you know you've done the best you can for your mom. I'm so glad you have a brother to help you with this. I pray for you peace that passes all understanding!

 

[ERICS MUM]

This might sound a bit silly but I speak from personal experience with my mum who is 87.

Has your mum been checked out for a urinary infection (UTI) ? They can have quite severe symptoms in elderly people and they don't always realise they have an infection so it isn't diagnosed.

Or could she have developed diabetes which can also produce these symptoms if not controlled (this happened to my granny, we only found out from the post mortem report).

I do hope things improve soon for you and your family.

Linda xx

 

[buzz5985]

We recently had to admit my mom to a nursing home. She fell the day we came back from WDW. Aparently banged her head. She went to the hospital, they put her in rehab. She had been becoming weak due to depression and lack of participating in life. We had hopes she would be able to go back to her apartment. But it wasn't possible. She was put on oxygen and was unable to understand how to get around with the tubing. They(the nursing home) said she was a danger to herself.

Previous to her falling she had been refusing to get help for her depression. My brother & I had great difficulty even getting her to scheduled doctor appointments. We'd help her make the appointments. We'd schedule our lives in order to take her to the appointments, then that morning she would call the doctors office and cancel the appointment.

So now, they (the nursing home) tell us she is suffering from "sundowners". She becomes uncooperative. She becomes extremely confused. The nursing home keeps suggesting we "up" her psychotic meds. They seem to help at first then she "platows". Has anyone else experienced this. I can't help but think if she could go back to not being on meds, to start fresh. Get her depression under control, maybe she wouldn't need to be in a nursing home.
Anyone? I think I need someone to confirm they are not just medicating her to keep her cooperative. But, I am willing to hear the voices of others who have experienced similiar instances.

Last March 2010, my father 77 asked me if I was going to pick up DS from school. I told him not for another 20 minutes. He decided to go for a walk. I picked my DS up from school, thought nothing that DF wasn't home yet - I figured he walked to Dunkin Donuts. I went to work. About 4 pm, my DS calls me - is there any reason why the Police would be calling my house?? No I don't think so - long story short - DF had walked to the Police station and told them I was trying to kill him. Along with a lot of other stories. Lucky for us the cop on duty, knew my uncle and called him. I made an appointment with a neurologist, but when I got home from work that night - Dad was very adjatated and wanted to go to the hospital. They checked for UTI, his sugar levels, etc. He was placed on a psych ward of a local hospital for 30 days. I went in one day to find him sitting in a corner, drooling with diapers on. I flipped. They were so concerned about his "sundowning" they were drugging him to death. We found an Alzheimers Unit in an Assisted Living facility
- Brightview Concord River. He had a rough first 3 months - really acting out of character - thinking people were in the walls, etc. Dr. Brent Forrester from McLeans' hospital is the visiting Dr. For Brightview - it was the best day of our lives the day he walked into my Father's life. He is on a small dose of mirtazapine for deppresion. He is also on Aricept for memory - which was a miracle drug for him. He is off all the anti-anxiety pills they had him on to get him to sleep at night. He as been doing awesome the last 6 or 7 months. We having a meeting with the Brightview people to discuss possibly moving him to a regular assisted living apartment - it would be cheaper. Assisted Living is expensive - but cheaper than a Nursing Home. He gets out daily on bus rides, goes to lunch, goes to the senior center dancing, bowling. He is a lot more active now than when he lived with me. There are doctors, hairdressers, dentist are all on site. All the places we toured that deal with Alzheimers/dementia are well aware of sundowning and are prepared to deal with it. They have little sitting areas the people to walk to, comfortable surroundings, etc. I found the hospital just wanted them to stay in bed so the only way was to drug them. We were also told that no Assisted Living place would want my father - because of the sundowning. I found that not to be true - but an uninformed social worker told us that. I wish I had picked McLeans Hospital where Dr. Forrester worked, and not Lawrence Memorial in Medford - horrible place. I do think the hospitals medicate to keep them in bed.

Dr. Brent Forrester - google him. The guy is awesome. If you call his phone - he answers. I emailed him to get a prescription refilled. He was in Greece at a conference and called it in from there. I can't say enough good things about him. He is one of the leading Doctors on dementia and alzheimers.

Please, please, please get your mother to see Dr. Forrester.
Any more questions feel free to ask.

Janis

 

[rjb123]

I am so sorry that you are going through this. I agree that it might be a good idea to consult a physician not affiliated with the nursing home. Does your mom have a primary MD?
Many prayers being sent for you and your mom.

 

[quasar4legs]

I am sorry that things are so hard for your family at the moment.

I agree with the others that it may be worth getting another medical opinion. When my dad was sick we found a gerontologist that reviewed his care, rehab and treatment options. We couldn't make every better but as a family we needed to know that we were making good decisions for him.
It is so hard.

Thinking of you and your family

Quasar

 

[Deesknee]

Oh MY! I am in tears at the wonderful outpouring of assistance, care, well wishes and prayers I have just read regarding my post. I am going to try to comment on the suggestions.

1) Mom has been treated for UTI. And yes I know it sounds so strange,but we had gone thru that with my Gram so we had her ck'd for that on several different occasions. Some were positive other times negative.

2) she has also been checked for diabetes. Negative to date.

3) I am going to google Dr. Brent forrester as soon as i finish this post.


I should have probably mentioned my mom has COPD and is on public medical ins. for low income people. (Mass Health).

Just knowing I am not overreacting or denying my mom's condition helps. I have loved ones that just keep saying to let the doctors/nurses at the nursing home do their jobs. They know medicine better than we (my brother & I). But it IS so hard to accept. Thanks everyone, I will try to update any progress/decisions. Thanks again.
Dee

 

[Deesknee]

Last March 2010, my father 77 asked me if I was going to pick up DS from school. I told him not for another 20 minutes. He decided to go for a walk. I picked my DS up from school, thought nothing that DF wasn't home yet - I figured he walked to Dunkin Donuts. I went to work. About 4 pm, my DS calls me - is there any reason why the Police would be calling my house?? No I don't think so - long story short - DF had walked to the Police station and told them I was trying to kill him. Along with a lot of other stories. Lucky for us the cop on duty, knew my uncle and called him. I made an appointment with a neurologist, but when I got home from work that night - Dad was very adjatated and wanted to go to the hospital. They checked for UTI, his sugar levels, etc. He was placed on a psych ward of a local hospital for 30 days. I went in one day to find him sitting in a corner, drooling with diapers on. I flipped. They were so concerned about his "sundowning" they were drugging him to death. We found an Alzheimers Unit in an Assisted Living facility
- Brightview Concord River. He had a rough first 3 months - really acting out of character - thinking people were in the walls, etc. Dr. Brent Forrester from McLeans' hospital is the visiting Dr. For Brightview - it was the best day of our lives the day he walked into my Father's life. He is on a small dose of mirtazapine for deppresion. He is also on Aricept for memory - which was a miracle drug for him. He is off all the anti-anxiety pills they had him on to get him to sleep at night. He as been doing awesome the last 6 or 7 months. We having a meeting with the Brightview people to discuss possibly moving him to a regular assisted living apartment - it would be cheaper. Assisted Living is expensive - but cheaper than a Nursing Home. He gets out daily on bus rides, goes to lunch, goes to the senior center dancing, bowling. He is a lot more active now than when he lived with me. There are doctors, hairdressers, dentist are all on site. All the places we toured that deal with Alzheimers/dementia are well aware of sundowning and are prepared to deal with it. They have little sitting areas the people to walk to, comfortable surroundings, etc. I found the hospital just wanted them to stay in bed so the only way was to drug them. We were also told that no Assisted Living place would want my father - because of the sundowning. I found that not to be true - but an uninformed social worker told us that. I wish I had picked McLeans Hospital where Dr. Forrester worked, and not Lawrence Memorial in Medford - horrible place. I do think the hospitals medicate to keep them in bed.

Dr. Brent Forrester - google him. The guy is awesome. If you call his phone - he answers. I emailed him to get a prescription refilled. He was in Greece at a conference and called it in from there. I can't say enough good things about him. He is one of the leading Doctors on dementia and alzheimers.

Please, please, please get your mother to see Dr. Forrester.
Any more questions feel free to ask.

Janis

OH Janis!!! I am going to discuss this with my brother. I think this is where my Mom should go. If she ends up in a nursing home after that.... well at least I will know we did all we can. Tears are pouring down my cheeks. From the time I was a child my mom used to say she hopes she will die before she ever ends up in a nursing home. I carry alot of guilt I am not able to have her live with me. So, thank you for providing me atleast another option to look into. thank you thank you thank you.

 

[buzz5985]

OH Janis!!! I am going to discuss this with my brother. I think this is where my Mom should go. If she ends up in a nursing home after that.... well at least I will know we did all we can. Tears are pouring down my cheeks. From the time I was a child my mom used to say she hopes she will die before she ever ends up in a nursing home. I carry alot of guilt I am not able to have her live with me. So, thank you for providing me atleast another option to look into. thank you thank you thank you.

The guilt is the hardest thing. Every time I hear a news story about an elderly person walking away from their home and people are searching for them - I think - I did the right thing. Nobody wants to end up in a Nursing Home - but sometimes there aren't any other alternatives. My father was lucky enough to have a little savings, is a retired firefighter, so that's how the Assisted Living is paid for. Look at all avenues. Was your mother or father a veteran?? They could help. Not all Nursing Homes are alike - visit them - find one you like and try to get Mom in that one.

Don't give up, your not alone. It's a horrible disease.

Janis

 

[Deesknee]

The guilt is the hardest thing. Every time I hear a news story about an elderly person walking away from their home and people are searching for them - I think - I did the right thing. Nobody wants to end up in a Nursing Home - but sometimes there aren't any other alternatives. My father was lucky enough to have a little savings, is a retired firefighter, so that's how the Assisted Living is paid for. Look at all avenues. Was your mother or father a veteran?? They could help. Not all Nursing Homes are alike - visit them - find one you like and try to get Mom in that one.

Don't give up, your not alone. It's a horrible disease.

Janis

I spoke with my husband and my brother today. They both seem to think I am grasping. They both say she wouldn't even be able to deal with the ride to the facility. I just can't believe in 5 months she has gone from being able to spend most of a day with us at our home, or on a ride, to not being able to be out for more than a couple of hours. Perhaps they are right. Maybe the COPD has progressed that quickly, combined with the dementia. They tell me we should just accept it and enjoy the fact she can atleast come out of the nursing home for the small amount of time that she does manage. I am not ready to completely give up. I am planning on talking more to my brother when noone else is around. I am very blessed he & I are able to communicate with each other in a loving open minded way. We both want what best for our Mom. And I will mention to the psychologist at the nursing home if there are other options. Perhaps I will give her the website of Mcleans.

The home she is in now is very nice. And my brother & I did do alot of research. It is rated amongst the best in the area. The staff seems truly caring. But when my mom gets irritable mid day to early evening they can't seem to calm her down. If they call me I can talk to her & calm her, but sometimes they don't call me until it is extreme. I understand they don't want to bother me, but I tell them all it isn't a bother... she's my mom. Thank you again. And for anyone who believes, I would appreciate prayers for my Mom, my brother and I . Please include prayers of acceptance if that is His will. Thanks.

 

[quasar4legs]

I am sorry that the conversation with your brother and husband didn't quite go as planned, it can be hard for all family members to see things the same way.

I hope you can all find a way to be at peace during this sad time, it is hard to watch our loved ones deteriorate and know there is little we can do to make it better.

I am glad you have been able to find a good nursing home for your mum, caring staff can make such a difference to everyone.
Does this facility offer family planning meetings? When my dad was sick we were able to have a group meeting with the staff (doctor, nursing unit manager, physio and psychologist), it was really helpful for our family to ensure that we all had the same expectations etc.
Just a thought.

I am so sorry
Quasar

 

[Deesknee]

I am sorry that the conversation with your brother and husband didn't quite go as planned, it can be hard for all family members to see things the same way.

I hope you can all find a way to be at peace during this sad time, it is hard to watch our loved ones deteriorate and know there is little we can do to make it better.

I am glad you have been able to find a good nursing home for your mum, caring staff can make such a difference to everyone.
Does this facility offer family planning meetings? When my dad was sick we were able to have a group meeting with the staff (doctor, nursing unit manager, physio and psychologist), it was really helpful for our family to ensure that we all had the same expectations etc.
Just a thought.

I am so sorry
Quasar

Thank you. The home does have meetings specific to dementia/ahlseimer (sp?). My brother and I have not attended one yet. I think we both realize we aren't ready for that group interaction yet. We have met with the staff and put into words our expectations and concerns. They have all been very understanding and patient with us. They have explained to us why her disease seems to have been put on a fast forward track. They remind us how lucky we are to have each other. That we know, but it always nice to be reminded of. We have another brother who due to his own illness' cannot be a part of this process. We both know she has dementia. We know it is a progressive disease. We have decided after talking at great lengths to leave her where she is. That it would only confuse her more to travel away from what she now considers her home. She still has times when she gets confused. Today was an excellent day. My husband, dd (7), and I had a nice visit. We even played Yahtzee together. I will take that as a bonus at this point. She still knows me and my family, but at times we believe she is confusing my brother with my father. It is harder for my brother.
Thank you again for the information and support. Somehow I find it easier to type with tears streaming than to speak. This is a support system for me, one I feel is filled with people who understand and don't judge. And for that I am grateful.

 

[quasar4legs]

Thank you. The home does have meetings specific to dementia/ahlseimer (sp?). My brother and I have not attended one yet. I think we both realize we aren't ready for that group interaction yet. We have met with the staff and put into words our expectations and concerns. They have all been very understanding and patient with us. They have explained to us why her disease seems to have been put on a fast forward track. They remind us how lucky we are to have each other. That we know, but it always nice to be reminded of. We have another brother who due to his own illness' cannot be a part of this process. We both know she has dementia. We know it is a progressive disease. We have decided after talking at great lengths to leave her where she is. That it would only confuse her more to travel away from what she now considers her home. She still has times when she gets confused. Today was an excellent day. My husband, dd (7), and I had a nice visit. We even played Yahtzee together. I will take that as a bonus at this point. She still knows me and my family, but at times we believe she is confusing my brother with my father. It is harder for my brother.
Thank you again for the information and support. Somehow I find it easier to type with tears streaming than to speak. This is a support system for me, one I feel is filled with people who understand and don't judge. And for that I am grateful.

Hi Deesknee,

So pleased the you feel you can post here, there are always people ready to 'listen' and give a cuddle

I am glad you were able to have a nice visit with your mum yesterday those times become very precious. We used to take little craft projects for the kids to do with my dad, we have some lovely memories of us all working on a collective project.
It sounds like the staff are being very supportive and helpful and I think it is good to voice any concerns so that they can be addressed promptly. I can totally relate to not being ready for the group meetings, even though other people are going through this experience our own pain is private (if that makes sense).

Thinking of you, your family and especially your mum.

Quasar

 

[quasar4legs]

repeat post. sorry

 

[Deesknee]

thanks quasar. My mom has had about a week of "good" days. I guess that is a relative term these days. She seems happy and has made comments without being prompted. She has expressed to me her age (off by only 1 year) and that "we are lucky" . She told my brother today that a woman that is a "resident" there is 100. She told him she lived to be that old because she is "well cared for".

Again so happy for each "good day" we have to spend with her.

And you are so right, the support is incredible. It is within itself a blessing.