For those with Alzheimer's experience...

[CAMom]

My dad has Alzheimer's. He's 68 and was early onset. He's getting worse.

 

He lives with my stepsister in Las Vegas and has since October. My stepmom is dying of lung cancer that has metasticized onto her spine (hospice is predicting between 2 and 6 months...my gut says it will be more in the neighborhood of 2). She lives in the house, too.

 

Here are some of the things he's doing just so those with experience can get a picture:

 

He's become defiant. Not forcefully oppositional but defiant. He's arguing when asked to take a shower, get dressed, etc. He doesn't want to leave my stepmom's side for a moment.

 

He's getting dressed and undressed all night long. My stepsister will finally talk him into putting on his pajamas. When she goes in a couple of hours later to check on them, he has on his clothes, has made the bed, and is lying on top of the covers sleeping. She'll go back in a couple of hours later and he's back in him pajamas and is in bed again. She'll go back in a couple of hours later and he's dressed with the bed made again. She's in there about 4-5 times from the time they go to bed until the next morning and each time he's in the opposite state.

 

He often needs directions to the bathroom. This happened when I was there two weeks ago as well. He got up to go to the bathroom, faced the kitchen and asked me which direction the bathroom was.

 

He asked my stepsister recently what was going to happen to him (my stepmom was in the hospital for a week). My stepsister told him not to worry because she was going to take care of him. He said, "Oh. Good. Because I don't think I have any family." She assured him that he did and he just asked, "Do they live near me?"

 

He's been regularly asking if his mother is coming to visit him. She died almost 6 years ago.

 

Anyway, talking to my younger sister a couple of days ago...she asked me if I was going to bring Dad back here to CA when our stepmom dies. I told her no. We've already been warned that he will likely take another big step downward when she dies and that we'll likely have to consider putting him in a facility. I can't see having him lose his wife and then taking him away from the person he trusts as his caregiver.

 

What do you think? I don't think my sister was happy with me. She just went silent. I live 250 miles from my dad. My two sisters live 350 miles from him. My stepsister is more than willing to have him placed somewhere near her. She consults with me on every thing that happens with him. She doesn't make any decisions about his care without my input.

 

Just trying to really think it through as it appears the time is approaching.

[Impish]

A facility is likely the best and safest option for everyone.

 

Alzheimer's patients have a strong potential to wander off. And not remember their way back. A facility can fit him with an alarm, a locked ward.

 

Then there's the other dangers...fires from forgetting they turned the stove on, medication mismanagement, even food poisoning.

 

Also, fear and aggression can go hand in hand, without warning.

 

I wouldn't worry about the dressing/redressing. Its not harmful behaviour.

 

Ensuring his safety is the #1 issue, and honestly, its best met at a facility. Plus, they usually have social activities, such as music from their youth, etc that brings them happiness.

[Mejane]

I have lots of experience with AD patients, and I agree with Impish that sometimes a facility is the best option. Dementia-specific facilities are safe, and the caregivers are only on for 8 hours, not 24 hours like family caregivers. As long as it's well-chosen and someone is actively involved in overseeing his care, there's no reason he shouldn't do as well or better in a facility than at home. Sorry, I know it's hard.

Edited May 26, 2011 by Mejane

[justamouse]

What do you think? I don't think my sister was happy with me. She just went silent. I live 250 miles from my dad. My two sisters live 350 miles from him. My stepsister is more than willing to have him placed somewhere near her. She consults with me on every thing that happens with him. She doesn't make any decisions about his care without my input.

 

Just trying to really think it through as it appears the time is approaching.

 

 

Yes, it is. You may want to think about going out there for a time to help because this is the very hard time.

[KristinaBreece]

We just put my great grandmother in an Alzheimer's specific community this past winter. She lived on her own as long as she could, with our family alternating nights on her couch, then went to live with my aunt & uncle (her son & DIL), until they just couldn't take care of her anymore. She would try to leave at night, wouldn't go to the bathroom, and she was beginning to be combative. Now she's in a facility that's close to her home & where she's well looked after and we have access to her at any time. She's never alone, and almost never without family with her. It's a wonderful facility and has absolutely been the best possible option for our family.

[justamouse]

Although a facility is a great for those who have financially planned for one, sometimes they're just not affordable. And then there's the high amount of dementia patients and the low amount of beds and the fact that they choose you, you don't choose them. All those things considered, finding a facility may not be impossible, but very hard. It's just not so easy as it's made out to be, and we found that out the very hard way.

 

If a facility isn't an option, your sister will need physical help.

[KristinaBreece]

Although a facility is a great for those who have financially planned for one, sometimes they're just not affordable. And then there's the high amount of dementia patients and the low amount of beds and the fact that they choose you, you don't choose them. All those things considered, finding a facility may not be impossible, but very hard. It's just not so easy as it's made out to be, and we found that out the very hard way.

 

If a facility isn't an option, your sister will need physical help.

 

Very true. We were very lucky to find a good local facility. We sold g.grandma's house & basically handed the profits to the nursing home, plus signed over her SS payments forever because she did not plan for this at all. Her small monthly stipend, plus $200K from the sale of her home & properties-- and her docs don't anticipate her living through the end of this year. That's a VERY expensive year.

[OrganicAnn]

My experience is that you will want to put him in a facility near the most number of family members. He will not necessarily remember everyone, but it is best to have him where the most people can visit. No matter how much anyone will visit, it won't be enough. He may not remember you were there yesterday. Visits and cards are a highlight of a day. So if you can send him a card everyday with a picture (copies of old pictures work too) are great.

 

You stepsister might not realize how emotionally exhausted she may be once her mom passes. She may need time to grieve and not take care of another person. She may feel guilty. She may have told her mom that she would take care of both of them. No matter what, you (your siblings) need to make the best decision for everyone including your stepsister.

 

Your step sister should also be very careful. If there are guns in the house, they need to be locked away. There have been cases where older men will have moments of action and will kill their spouse, self and others. Or will physically attack their caregiver. These might be unlikely, but be safe not sorry.

 

Also it sounds like you know that it is Alzheimer, but there have been cases with Alzheimer like symptoms caused by medication (too much, too little, side affects etc).

 

Good luck.

[Harriet Vane]

My experience is that you will want to put him in a facility near the most number of family members. He will not necessarily remember everyone, but it is best to have him where the most people can visit. No matter how much anyone will visit, it won't be enough. He may not remember you were there yesterday. Visits and cards are a highlight of a day. So if you can send him a card everyday with a picture (copies of old pictures work too) are great.

 

You stepsister might not realize how emotionally exhausted she may be once her mom passes. She may need time to grieve and not take care of another person. She may feel guilty. She may have told her mom that she would take care of both of them. No matter what, you (your siblings) need to make the best decision for everyone including your stepsister.

 

Your step sister should also be very careful. If there are guns in the house, they need to be locked away. There have been cases where older men will have moments of action and will kill their spouse, self and others. Or will physically attack their caregiver. These might be unlikely, but be safe not sorry.

 

Also it sounds like you know that it is Alzheimer, but there have been cases with Alzheimer like symptoms caused by medication (too much, too little, side affects etc).

 

Good luck.

 

:iagree: Well said.

 

Please don't feel guilt about the nursing home. It's such a hard decision, and one I had hoped we would not have to face with my grandma. My mother was taking care of her in her home, and it got to be sooooo overwhelming the worse Grandma's dementia became. She needed to be watched 24 hours a day because of her getting up at night and finding ways to leave the house. It was very, very dangerous, and unbelievably stressful for those of us who cared for her. None of us wanted her in a facility, but it was the only way to keep her safe. She's been there 3 weeks now.

[Denisemomof4]

Although a facility is a great for those who have financially planned for one, sometimes they're just not affordable. And then there's the high amount of dementia patients and the low amount of beds and the fact that they choose you, you don't choose them. All those things considered, finding a facility may not be impossible, but very hard. It's just not so easy as it's made out to be, and we found that out the very hard way.

 

If a facility isn't an option, your sister will need physical help.

 

:iagree:

 

I can't imagine what your sister is going through. I have been at the side of a good friend for MONTHS as her husband suffered through his cancer treatments. Once his lung cancer spread to the bones, he had little time left. 2 - 3 months for your s-mom may be accurate.

 

Your poor s-sister has SUCH a heavy load on her. I also cared for my mother with dementia in my home. I had hired help because my parents had WONDERFUL insurance. Even with someone in the home 8 hours per day, it was an EXHAUSTING experience. It took me over a year to recover from my burnout, I would say.

 

This is a very difficult situation and I don't know how to advise. Your father's Alzheimer sounds pretty advanced. He will need constant supervision. Is he being properly medicated so he can sleep well, and to prevent the agitation?

 

Easter Seals had an adult day care that my mom could have gone to, as did one of the local hospitals. They even sometimes have buses to offer transportation. If your father doesn't go to a facility, maybe you could check into these for him? At least there would be relief during the day.

 

I'm really sorry you're going through this.:grouphug:

[Denisemomof4]

Very true. We were very lucky to find a good local facility. We sold g.grandma's house & basically handed the profits to the nursing home, plus signed over her SS payments forever because she did not plan for this at all. Her small monthly stipend, plus $200K from the sale of her home & properties-- and her docs don't anticipate her living through the end of this year. That's a VERY expensive year.

 

this doesn't sound right. My mil has been in a facility for years now. SSI has been signed over to them, she's on medicare, and we owe something like 128k once the sale of the house takes place. Like I said, she's been there for years, almost 4 if I remember right.:confused:

[Denisemomof4]

You stepsister might not realize how emotionally exhausted she may be once her mom passes. She may need time to grieve and not take care of another person. She may feel guilty. She may have told her mom that she would take care of both of them. No matter what, you (your siblings) need to make the best decision for everyone including your stepsister.

 

 

 

Good luck.

 

:iagree:

 

Also, I won't go into details, but I think it's VERY important that family check on their elderly REGULARLY, and at different, unpredictable times to make sure their loved one is getting PROPER care.

[Denisemomof4]

In addition, if the defiance has started, then it is likely that it will get worse... My FIL who never said a mean word to his wife in his LIFE started calling her names and swinging at her. THAT was no fun.

 

If your step-sister is up for it...she is. But she should know what she is "up for" and what resources she can call on for respite.

 

again, :iagree: My mother definitely got verbally AND physically abusive. Poor thing would have rather taken her life if she knew how she would have been. There are medications that help TREMENDOUSLY for the agitation.

 

Also, about a month before my mom died I felt like I could be hospitalized for exhaustion myself. I was a complete and total basket case. I can't imagine caring for a cancer patient in the end stages of their disease AND an Alzheimer patient. I sure hope your s-sister has some form of support. She WILL need help.

[CAMom]

Thank you so much for helping me sort this through. :grouphug:

 

This has been a particularly hard day. It's the day my stepmom was officially admitted to hospice and my uncle died today. Sigh...

 

Here's a bit more clarifying info. Feel free to continue to advise me based on it.

 

My stepsister considers my dad her dad. Even though her mom and my dad were not married until we were adults. She is fully committed to him. When I have been with them, I am so touched by the way she handles him. She is so careful to always maintain his dignity. I have absolutely no doubt that he is being treated very well.

 

S-sister used to work in a nursing home. She understands what it's like to care for the elderly. I'm not saying that makes it easy on her. Only saying that she does know what's involved.

 

There are two other adults (my bil and my niece) who live in the house and assist with all of the care. S-sister works full time. Brother and niece take care of s-mom and Dad while she's at work. I know she's exhausted and I am her sounding board. I try to keep up on how she's faring. I know there will be huge amounts of grief when her mom passes away. That's why I'm trying to make sure I am thinking it through ahead of time.

 

In Las Vegas there are two s-sisters, two bils and one adult niece. So, there are 5 adults who are involved in the care even though s-sister is the primary caregiver.

 

There is no money. Seriously. I don't think my dad and s-mom have a dime in the bank. At this point, all of their income (ss and a very small retirement amount my dad gets) goes to dr. visits and medication. They have no assets except a paid for car. I'm about to start spending $30K a year to send my oldest to college so my money is pretty tied up right now, too.

 

My grandma (his mom) also had Alzheimer's. Her's didn't come on until late 70's early 80's. His began around age 63.

 

This has been so hard. It's awful to watch my stepmom dying and it's so sad to see what's happening to my dad.

 

I so appreciate all of the input!

[justamouse]

:iagree:

 

Also, I won't go into details, but I think it's VERY important that family check on their elderly REGULARLY, and at different, unpredictable times to make sure their loved one is getting PROPER care.

 

Absolutely. Alz patients aren't nice sometimes. And that's making it sound much nicer than it is. Healthcare workers get tired of dealing with them, full stop.

 

The sheer hell we went though...

 

this doesn't sound right. My mil has been in a facility for years now. SSI has been signed over to them, she's on medicare, and we owe something like 128k once the sale of the house takes place. Like I said, she's been there for years, almost 4 if I remember right.:confused:

 

They wanted half the amount of my MILs house, and his SS, they wanted records of all assets. OR MIL could pay 9000 a month-upfront. And that was the third place and they weren't sure if they could handle him because he took so much care and threatened her constantly with kicking him out.

 

 

There is no money. Seriously. I don't think my dad and s-mom have a dime in the bank. At this point, all of their income (ss and a very small retirement amount my dad gets) goes to dr. visits and medication. They have no assets except a paid for car. I'm about to start spending $30K a year to send my oldest to college so my money is pretty tied up right now, too.

 

 

 

First :grouphug:. I'm so sorry for your loss today.

 

Perhaps having nothing is better-if they have medicare your s-sister may be able to get him in somewhere.

 

Even if family is around, most people-unless you've dealt with it, just don't understand the depth of care, especially in the end. Many men are still very strong, even at that age and despite the Alz. If my FIL got it in his head to do something, my MIL could not physically restrain him, and there's no reasoning with them.

 

My SIL used to have to talk to my FIL and 'fire' my MIL almost every day. He would lock her out of the house. He needed physical care she just couldn't provide because he was still a tall, large man.

 

If I were you, since they have nothing, I would call Medicare and see what is available for him.

[CAMom]

Even if family is around, most people-unless you've dealt with it, just don't understand the depth of care, especially in the end. Many men are still very strong, even at that age and despite the Alz. If my FIL got it in his head to do something, my MIL could not physically restrain him, and there's no reasoning with them.

 

My SIL used to have to talk to my FIL and 'fire' my MIL almost every day. He would lock her out of the house. He needed physical care she just couldn't provide because he was still a tall, large man.

 

If I were you, since they have nothing, I would call Medicare and see what is available for him.

 

Very good, practical advice! I am trying to make sure I do everything I can to be a support to her. I'm hoping to start investigating some avenues for her. I have directed her to the Alzheimer's Assoc. but she hasn't gotten in touch with them yet. I understand since she's dealing with her mom, too.

 

I'm wondering how much I can actually do? She has the medical power of attorney. Should I just start investigating help and calling facilities as prep work?

 

And, would anyone agree that I should leave him near her since she's the one he trusts as his caregiver? I just don't want him to lose her, too. My stepmom was diagnosed with the lung cancer in Sept. of '07. He was diagnosed with prostate cancer just two weeks later. He's also had a bout with bladder cancer. S-sister has been taking care of him through all of it. She dispenses all of his medication, goes to every single one of his dr. appts., etc.

 

She used to drive back and forth from Vegas to here constantly to take care of them which is why we finally moved them to her back in Oct.

 

I'm so used to usually being the one who is the caretaker (from other situations) that I'm trying to find my purpose in a situation where I am not the primary caretaker, KWIM? It's been hard to sort it all out.:confused:

[Denisemomof4]

Have you asked her what she wants to do about his care long term? I'd have a frank discussion with her about that.

 

Any move would initially be hard on the Alzheimer pt. but they adjust.

 

I just want to clarify that when I said to do regular, unscheduled visits to make sure your loved one was getting proper care, I meant if he's in a facility. I wasn't questioning the care your sil is giving him.

 

I would think there oculd be some sort of agency or social worker who could guide you all on any options you might have.

 

What a difficult time for you all.,:grouphug:

[CAMom]

Have you asked her what she wants to do about his care long term? I'd have a frank discussion with her about that.

 

Yes, we've talked a lot about it. She just talks as if she assumes she will remain as the caregiver. She's very committed to him. She does feel (and is prepared) that he will need to be moved into a facility sometime after my stepmom passes away.

 

I just want to clarify that when I said to do regular, unscheduled visits to make sure your loved one was getting proper care, I meant if he's in a facility. I wasn't questioning the care your sil is giving him.

 

Oh, I understood that's what you meant.:) I was just trying to convey that my stepsister really does consider him her dad and that he's not just a "tag along" that came with her mom.;) I can't believe how incredible she's been with him! I am so thankful for all she's done and that she loves him so much.

 

I would think there oculd be some sort of agency or social worker who could guide you all on any options you might have.

 

That's what I'm hoping. In fact, I'm hoping that as hospice makes regular visits for my stepmom, they will have some suggestions as far as my dad is concerned, too. I know they usually have some connections and they should have a social worker on staff.

 

What a difficult time for you all.,:grouphug:

 

Thanks for the hug...:grouphug:

[justamouse]

IN MY OPINION:

 

 

1. MedicAID (not Medicare).

 

Yes, my bad. I got them mixed up.

 

Great post.

[Alicia64]

I bet the sister is exhausted. I have a good friend who's doing it all for her elderly parents in her home and the other siblings care, but don't do much.

 

I feel for my friend.

 

I feel for everyone in this situation.

 

When I hear about this, I pray that my sons won't be the "68 year old man" who asks how to get to the bathroom.

 

:grouphug: Alley

[mom2l&j]

DH is medical Power of Attorney for his grandmother. She has Lewy Body Dementia which shares some characteristics of Alzheimers.

 

Grandma has been in a nursing home since September. We kept her home as long as possible. We had to hospitalize her to get some medications adjusted. During that hospital stay we were told that she would only be released to a nursing home. We found only one nursing home in about 100 was willing to take her in due to the stage she is at. I'm not sure how common this situation is, but I would suggest looking in to the facility options now.

 

I would look for a facility where there are the most family members that are able to visit. It's sad to say, but it really won't matter who it is. He likely won't remember who it is that is visiting.

 

The best guarantee of good care is consistent family visits. Even though we have a 45 min drive to the nursing home, we have someone there nearly every day of the week.

 

Others have mentioned the money issue. Grandma had $10,000 to her name and no assets. That money is long gone and is now on medicaid. You just have to find a facility that takes it.

 

Any chance your dad is a vet? If so, then you definitely need to find someone to help you see if he qualifies for the Veteran's Aid and Attendance Benefit. It will provide money to help in the care of your dad.

 

Feel free to ask me any questions!

[Joanne]

If you decide on a facility, let me know and I can PM or post some ideas on making things as best as can be in a setting like that (I just finished an internship at one, and have done my most recent research in this topic).

 

If you decide to keep him at "home", sis needs help.