Aging Parent Support Thread

[Bonny]

The Kaiser placement officer called me and it looks like it's bad news and more bad news. And it certainly didn't help that Dad "f"ed himself during the palliative care intake interview on December 26th. Apparently he told the Dr. that he could walk a mile, his pain level was only "1" on a scale of  1-10 and had no issues with toileting, eating, or dressing.

 

 The placement officer was very nice and sympathetic. She's run into this situation before and said that if I can get one of his other doctors to write a note evaluating him differently she can update his file and start the process. However she has warned me that find any kind of nursing facility that has space is very, very difficult even with private pay. There is a huge demand of nursing care facilities in San Diego County and not enough beds. She was suggesting that I think about renting an apartment for him and see if I can find a roommate that will trade caregiving services for room and board. We have a friend here locally who does that and it's been one disaster after another. I can't imagine trying to manage that kind of situation from 500 miles away.

I think I'm going to have to contact the doctor and the gf about a plan to let him stay through his treatment. There's no way I can help if neither the gf nor my father will cooperate.

[buystoys]

So sorry to hear that, Bonny.  I had hoped you would receive some good news from Kaiser.

[busymom]

Sorry you're dealing with all of this, Bonny.  



I just wanted to mention that being paranoid IS one of the symptoms of dementia or Alzheimer's, and wanted you to know.  Hang in there!

[Tennesseer]

Jan 10, 2019 9:48:07 GMT -5 busymom said:

Sorry you're dealing with all of this, Bonny.  



I just wanted to mention that being paranoid IS one of the symptoms of dementia or Alzheimer's, and wanted you to know.  Hang in there!

An interesting experiment. If it's successful, I would like to see some of these developments/centers in the States. It may lessen the paranoia. My mom was fearful of unknown surroundings as are most AD and dementia pafients.

INSIDE THE $28 MILLION ALZHEIMER’S VILLAGE WHERE PATIENTS CAN SHOP, FARM AND SOCIALIZE FREELY

[TheOtherMe]

Bonny, both of my parents lied to their doctors.  

Mom had stomach issues for a good 20 years but would never tell the doctor.  I was with her a few times when she told him her stomach was fine.  It wasn't.  Now that I've had my gallbladder removed, I think that was probably her issue.  

Mom also told the doctor that she walked.

Dad currently tells his doctor and anybody who asks that he walks.  He does not walk.  It's all he can do to get from his apartment to  my car.  He won't hear to a can or walker, which I think he needs. 

[stillmovingforward]

Add me to the group with a parent that lies to her doctor. Or chooses not to mention her 'other' issues when she's there.

[Bonny]

Jan 10, 2019 9:48:07 GMT -5 busymom said:

Sorry you're dealing with all of this, Bonny .  



I just wanted to mention that being paranoid IS one of the symptoms of dementia or Alzheimer's, and wanted you to know.  Hang in there!

It's interesting that you bring up the dementia/Alzheimer's element. It reminded me that HER mother had either dementia/Alzheimer's (I can't remember which). She lived well into her 90s before passing.

That said, I haven't seen any other behavior such as the forgetfulness that normally goes with those diagnoses.

FWIW Dad has always been a little paranoid. He's always made the joke since I was a teenager about "Just because I'm paranoid it doesn't mean they're not out to get me". It's certainly possible she picks it up from him.

[countrygirl2]

MIL lied to the doctor, lets face it all old people do, I probably will at some point. My mom did too, the biggest fear is losing independence.

They did an evaluation of MIL, there are things like draw a square like the doc did, write things, I don't remember all of it.  But MIL couldn't do the same simple things.  She didn't even know what year it was, the day I can see, but should at least be aware of the month, but she won't read, or anything so likely didn't know.

When we were done, she said I did good on that.  The poor woman had failed everything and she thought she was fine, how sad.  Dementia and Alz are horrible.


You have options, you said he is terminal and going to be in great pain.  What I foresee is one day getting a panicked call from the girlfriend saying she can't do this when he gets really bad.  At that point I assume he will bounce in and out of the hospital with constant calls to you.  I'm sorry but that is what ends up happening.  Be thankful you weren't like me fielding calls almost daily, people breaking in, people stealing, they didn't eat, calling police constantly, and on and on.  So far other then him not getting the best care its not to that point.  He needs an evaluation and you go too, so you can tell them what he cannot do in a case like this.


It's sure difficult to navigate in such circumstances.  My dad would have been the same or worse, his life ended quickly in a construction accident. 

[Bonny]

Jan 10, 2019 14:57:20 GMT -5 countrygirl2 said:

You have options, you said he is terminal and going to be in great pain.  What I foresee is one day getting a panicked call from the girlfriend saying she can't do this when he gets really bad.  At that point I assume he will bounce in and out of the hospital with constant calls to you.  I'm sorry but that is what ends up happening.  So far other then him not getting the best care its not to that point.  He needs an evaluation and you go too, so you can tell them what he cannot do in a case like this.

To item 1, that's exactly what I'm expecting and I told my brother the same. He's physically a lot closer but still about 1.5 hours away.

As to getting the "best" care he's probably in the best spot he can be given the circumstances. I don't know how he is internalizing all of this; knowing he's going to die and at the same time dealing with a girlfriend who no longer wants him around. I know he was all for getting her some help and must be frustrated that she's unwilling to accept it either.

And yes, I've got a telephone appt with the oncologist for tomorrow at 2pm. I want her to give Kaiser an updated status. It may need to wait until I can get there for his appt on Feb 1st.

Thank you again for sharing your perspective. You've been very helpful.

[countrygirl2]

I don't mean to be unkind, I'm just a very matter of fact person. I have not dealt with a terminal illness like this.  Mom had COPD, stomach issues, all kinds of problems that ended her in a nursing home and for her a basically drawn out death. But she was there only about 6 months or less, kept her out long as I could.  On her last trip to the ER, I looked at her bruised arms, her not weighing anything and I told the ER doctor to just make her comfortable and let her go.  She had pneumonia, he told me even with aggressive treatment he didn't know if she could be saved anyway, she passed the next day, I was there.  I just couldn't take care of her the last year or so.  I went daily to see her but what can you do?

I'm sure he is struggling, but we can't see our partners unable to cope I don't think. Mom had a boyfriend they were together for years, she was near 80.  His kids wanted her to come out and be with their dad they would hire help, she would not do it.  I thought she could, but I think he cared a lot more for her then she did him.  I hate to say it but I think she cared more about him taking her places and doing things then she did him.  He wanted to marry her so bad.  He was a really good man but he got lupus in his very old age.  I think he grieved over her not being there.  It was not my business but I thought she was cruel. His kids were really good to him, but he had several so made it easier.

Realize though Bonny when he gets in someplace that doesn't mean he will get good care.  If they had the assisted living MIL is in when mom was alive she would have been there.  I have been told, the state review for this one is so good, they had federal people come in to look at it be cause they said none could rank that well.  Well it does.  The admin is a wonderful woman.  The place is clean, no smells and if it does not for long.  The residents for the most part are happy, some will just never be happy.  It has such a wonderful, homey atmosphere, anyone would feel welcome here.  We get a calendar and there is not a day goes by when they do not have some group or people coming in to entertain them.  Musical groups, local churches, schools, celebrations all the time.  The meals are good, we eat there once in awhile.  I can only hope its still like that when I need care.  We are so blessed to have such a facility in our community, but its the admin that makes the place.  She is a wonderful, caring woman. I hope you can find similar.

It's a hard journey lady, I will be thinking of you.

[Bonny]

I am making progress.

I used a referral service like "A Place for Mom" and out of the 5 listings they gave me 4 have already contacted me. I also contacted a residential facility in which DH's ex stepmother lives and they are also in the same price range of $3k-4k when you add everything up. We really liked that facility but I thought it would be too much money. Her son sent me a copy of her bill so I could see all the add-ons.

From the Kaiser placement officer I also got referrals to three skilled nursing facilities in the area. One has a really high Medi-Cal ratio; 81 Medi-Cal beds of 149.

So the good news is that there are plenty of facilities in the immediate area, some of which are hungry and I can negotiate their one time "community fee" since many of them have no fee. I'm feeling better and less panicked.

Of course in the meantime my uncle is getting involved. He means well but I'm already getting the feeling that he's just going to muddy the waters. He's convinced that he can persuade the gf to keep Dad at home and accept outside help. I wish him success (if she'll even meet with him) but we've been down this road before. If she agrees she'll change her mind the next day and it' will be another crisis situation. 

[raeoflyte]

Hugs Bonny.  I hope you find a good facility and can get him moved in without a lot of fuss. 

[TheOtherMe]

In my mind we have reached the same point with dad.  Too many things that have happened over the last few months have made me realize he is absolutely not safe living alone.

Called my niece this evening and we had a long talk.  She and her mom are co-POAs for medical and sister is POA for finances.  She agrees that she has seen a steady decline in the last few months and she thinks it's time for him to be some place where he gets more care.  She told me that her mom told her and her brothers that they would have to convince her when it's time because she either won't see it or won't want to see it.

Niece is going to talk to her brothers and talk to her mom either this weekend or next week when they take dad to the doctor.  If something doesn't happen, I have to change things up and take care of me.

[Bonny]

Yesterday DH told me how I've been mis-handling the g/f. Today we I said that this was an imperfect process and that I would make mistakes and needed his support he threw a fit and said he couldn't believe I was saying he was being unsupportive. Then he stormed out of the room and is hanging out downstairs.

This is a lonely journey in R/L. Thank you guys for being here.

[TheOtherMe]

I know the feeling and know it's going to only get more difficult for me and my family and for you and your family.

[buystoys]

Sorry Bonny. 

[empress of self-improvement]

Jan 18, 2019 10:38:43 GMT -5 TheOtherMe said:

I know the feeling and know it's going to only get more difficult for me and my family and for you and your family.

Ain't that the truth!

[empress of self-improvement]

Bonny - next time you guys come out here, let me know ahead of time and I would be glad to punch your DH for that. I am so cranky right now, I'll punch anyone for the slightest little thing. Why did I stop drinking again?

[Bonny]

Jan 18, 2019 15:26:10 GMT -5 empress of self-improvement said:

Bonny - next time you guys come out here, let me know ahead of time and I would be glad to punch your DH for that. I am so cranky right now, I'll punch anyone for the slightest little thing. Why did I stop drinking again?

Lol! I go through a "dry January" most years to help shed the holiday lbs. My gf was telling me today about how having a sip of Tequila is really the best option to keep your weight down. I laughed and said that based on what I'm going through I'd be going through the whole damn bottle!

[Bonny]

Another Update:

G/f has not responded from my two e-mails last week. I sent a follow up one Sunday. Apparently I am getting the silent treatment.

I gave my brother an e-mail update yesterday and in his response he told me that Dad said he would never leave the g/f.  Apparently we have a major relationship disconnect.

I'm headed to So. CA on Saturday and will be looking at both residential and skilled facilities. I've e-mailed that I will be taking my Dad to his appts on Friday, the 1st. Should be an interesting week.

[TheOtherMe]

I do not envy you, Bonny.  Good luck with this

[buystoys]

Best of luck to you Bonny.

[countrygirl2]

Good luck, the day of the move was a nightmare.  The things MIL said to hubs was awful.  She had reamed me out before when I had to tell her she and her sister had dementia. I thought she was going to hit me.  She ordered me out of her house and everything, I can understand that.  She cussed hubs up one side and down the other when he told her she had to move.  Of course, it was all my fault.  It had been a couple weeks before when they moved her sister out, same thing.

I do not envy you at all.  I hope it goes better for you and yours.

[countrygirl2]

Not aging parent but disabled daughter issues.  This is the second time in about 3 days.  I heard all this gas, she has it bad with all the diverticuli, I cannot get her to quit or cut down on sodas. If I don't buy them she drags them home on her chio day.  It would help some I'm sure but not solve all her issues.

I could smell it in the living room, went to check in her bathroom, feces all over the commode. Now I was just ready to hit the sack so have been cleaning for half an hour.  I made her get up, all over her bed so she had to take a bath.  We are fighting about wearing the protective underwear, which helps this.  When I got her pants, the other night I threw them away, can't do that all the time. Well they were loaded, I said you actually went back to bed with that mess all over you?  Her posterior is so large I'm thinking she doesn't feel it, not sure she feels on her skin like us. I changed all her bedding, I keep 2 protective sheets on her bed, so took the top one off.  Added a folded up sheet and clean everything.  I'm washing stuff and soaking some.  I was so tired and ready to hit the sack, now I'm all wound up and aggravated too.  She needs to help to minimize the mess.

I have no idea what will happen to her when I'm gone. I can see caregivers being mad at her and abusing her.  I try not to worry about a future I cannot control but I do.

The tech I saw the other day for the brace, said he was a pharmacy rep for 10 years.  We were talking about her meds, he said, as I knew, the respiradone makes them hungry all the time and they just pack on weight.  And her not moving much sure doesn't help.  I have my brace now if I get my bigger shoes soon, I'm going back to the fitness center and see if I can get her to move more.  If I can keep her from gaining more it would be a plus.

Ok, going to try for bed.  At least you aren't dealing with something like that so far.  It's not fun. I have to get up at 6:30 in the morning as does she.  I think she is back asleep.  Later

[Bonny]

Jan 24, 2019 1:06:19 GMT -5 countrygirl2 said:

Good luck, the day of the move was a nightmare.  The things MIL said to hubs was awful.  She had reamed me out before when I had to tell her she and her sister had dementia. I thought she was going to hit me.  She ordered me out of her house and everything, I can understand that.  She cussed hubs up one side and down the other when he told her she had to move.  Of course, it was all my fault.  It had been a couple weeks before when they moved her sister out, same thing.

I do not envy you at all.  I hope it goes better for you and yours.

Yeah, I'm pretty sure I'm going to get blamed for gf's issues. If he pushes back then I'm pushing it back on g/f. I'll let her know what facilities are acceptable and she can deal with driving him there.

I'm so sorry about the issues you have with your daughter. Can you get a paid caregiver to help you?

[bean29]

Jan 24, 2019 1:49:55 GMT -5 countrygirl2 said:

Not aging parent but disabled daughter issues.  This is the second time in about 3 days.  I heard all this gas, she has it bad with all the diverticuli, I cannot get her to quit or cut down on sodas. If I don't buy them she drags them home on her chio day.  It would help some I'm sure but not solve all her issues.

I could smell it in the living room, went to check in her bathroom, feces all over the commode. Now I was just ready to hit the sack so have been cleaning for half an hour.  I made her get up, all over her bed so she had to take a bath.  We are fighting about wearing the protective underwear, which helps this.  When I got her pants, the other night I threw them away, can't do that all the time. Well they were loaded, I said you actually went back to bed with that mess all over you?  Her posterior is so large I'm thinking she doesn't feel it, not sure she feels on her skin like us. I changed all her bedding, I keep 2 protective sheets on her bed, so took the top one off.  Added a folded up sheet and clean everything.  I'm washing stuff and soaking some.  I was so tired and ready to hit the sack, now I'm all wound up and aggravated too.  She needs to help to minimize the mess.

I have no idea what will happen to her when I'm gone. I can see caregivers being mad at her and abusing her.  I try not to worry about a future I cannot control but I do.

The tech I saw the other day for the brace, said he was a pharmacy rep for 10 years.  We were talking about her meds, he said, as I knew, the respiradone makes them hungry all the time and they just pack on weight.  And her not moving much sure doesn't help.  I have my brace now if I get my bigger shoes soon, I'm going back to the fitness center and see if I can get her to move more.  If I can keep her from gaining more it would be a plus.

Ok, going to try for bed.  At least you aren't dealing with something like that so far.  It's not fun. I have to get up at 6:30 in the morning as does she.  I think she is back asleep.  Later

countrygirl2 I have decided that anything with corn it is gives me horrible gas/diarrhea.  I dk if you could test for food allergies?  I also have issues if my synthroid dose is too high.  I avoid corn, soup (most of it has corn syrup), restaurant fried food, and anything with milk or eggs as I am also lactose intolerant.  I pretty much have my issues controlled by controlling my diet, and I adjust my meds to the low end of what my Dr. Prescribed.   I am really tempted to get a bidet.  I am curious how complicated it would be to install in our existing house.  They now have attachment bidet seats you can attach to your existing toilet.  Sam's Club was selling them at the November Member Sale, but I did not see it until after the fact.   Maybe some kind of a Bidet would help with your daughter's issues?

[countrygirl2]

My son put a portable in their downstairs bathroom, I don't know how much they use it.  They have them everywhere overseas, but I'm not sure it would help.

I hate to be graphic but her posterior is so big I don't think she could sit on one.  Honestly she needs to spread out her cheeks to stop the problem.  She has become so obese, well I think you understand.  If I can get her to do it its ok.  That is why she needs a bathtub and we do have a sprayer for her.  She is 5'3" and weighs 192.  She isn't eating as much, I really watch what she eats though she sneaks food in at times.  I go through her room and get rid of it.  

She has diverticulosis so bad, its through her small and large intestines.  It is so bad they would not even try to fix her hemmoroids.  The gastro doc in Texas many years ago wanted to remove her colon completely and do an ostomy, I said no.  I consulted with her other docs they agreed, they were like me caring for it would be a nightmare, but its coming I think.  We had a colonoscopy last year and they said she is very debilitated.  It took the anesthesiologist to finally get a line for an IV started.  I have to leave its so painful. They cannot find good veins.   I doubt they will do anymore.

The doc in Texas said if it got like it did before, the colon perforated she could die, yes, we are aware of that.  She almost did at age 25 when they had to do a resection.

She has been eating more salad, likely have to pull back on that, have to watch what she eats and her diet isn't good.  She would live on pasta.  But reducing her sodas, she watches and does not eat seeds, popcorn, or nuts, hubs said try telling her the docs said she cannot drink soda either, so I will do that.  Will let her on occasion, but try to reduce, she keeps getting her little pleasures taken away, sigh.

She has so many issues, not going to reiterate them here.  I was just tired last night and yes I get aggravated.  She is having this happen more often and not wanting to wear her protective garments.  That helps a lot, going to have to be tough again. 

Our hopes are we out live her, some of you will think that is horrible, some will understand. 

[CCL]

Agree with bean29. It might be worthwhile to look into food allergies and/or sensitivities. You could try eliminating 1 thing at a time and see if there's any improvement in her symptoms.

[bean29]

Jan 24, 2019 15:47:21 GMT -5 countrygirl2 said:

My son put a portable in their downstairs bathroom, I don't know how much they use it.  They have them everywhere overseas, but I'm not sure it would help.

I hate to be graphic but her posterior is so big I don't think she could sit on one.  Honestly she needs to spread out her cheeks to stop the problem.  She has become so obese, well I think you understand.  If I can get her to do it its ok.  That is why she needs a bathtub and we do have a sprayer for her.  She is 5'3" and weighs 192.  She isn't eating as much, I really watch what she eats though she sneaks food in at times.  I go through her room and get rid of it.  

She has diverticulosis so bad, its through her small and large intestines.  It is so bad they would not even try to fix her hemmoroids.  The gastro doc in Texas many years ago wanted to remove her colon completely and do an ostomy, I said no.  I consulted with her other docs they agreed, they were like me caring for it would be a nightmare, but its coming I think.  We had a colonoscopy last year and they said she is very debilitated.  It took the anesthesiologist to finally get a line for an IV started.  I have to leave its so painful. They cannot find good veins.   I doubt they will do anymore.

The doc in Texas said if it got like it did before, the colon perforated she could die, yes, we are aware of that.  She almost did at age 25 when they had to do a resection.

She has been eating more salad, likely have to pull back on that, have to watch what she eats and her diet isn't good.  She would live on pasta.  But reducing her sodas, she watches and does not eat seeds, popcorn, or nuts, hubs said try telling her the docs said she cannot drink soda either, so I will do that.  Will let her on occasion, but try to reduce, she keeps getting her little pleasures taken away, sigh.

She has so many issues, not going to reiterate them here.  I was just tired last night and yes I get aggravated.  She is having this happen more often and not wanting to wear her protective garments.  That helps a lot, going to have to be tough again. 

Our hopes are we out live her, some of you will think that is horrible, some will understand. 

No, I do not think your wishing to outlive your DD is horrible.  I have a friend who has a sister that is also Obese.  She is Bi-Polar and she has ALS.  They put her in a skilled nursing facility.  My friend just had surgery on her shoulder, and I stopped by to help her with something.  My friend mentioned that her DS is lactose intolerant, but the staff at the facility that day had served her DS Grilled Cheese sandwiches for two meals that day.  I can't figure out why they would do that, but they did.  It kind of goes along with something you said in an earlier post.  The staff really must hate her, and want her to suffer.  I would think they would not do that, because someone has to clean her up, but I guess maybe they just don't do it.

[Bonny]

Jan 24, 2019 16:09:44 GMT -5 bean29 said:

Jan 24, 2019 15:47:21 GMT -5 countrygirl2 said:

My son put a portable in their downstairs bathroom, I don't know how much they use it.  They have them everywhere overseas, but I'm not sure it would help.

I hate to be graphic but her posterior is so big I don't think she could sit on one.  Honestly she needs to spread out her cheeks to stop the problem.  She has become so obese, well I think you understand.  If I can get her to do it its ok.  That is why she needs a bathtub and we do have a sprayer for her.  She is 5'3" and weighs 192.  She isn't eating as much, I really watch what she eats though she sneaks food in at times.  I go through her room and get rid of it.  

She has diverticulosis so bad, its through her small and large intestines.  It is so bad they would not even try to fix her hemmoroids.  The gastro doc in Texas many years ago wanted to remove her colon completely and do an ostomy, I said no.  I consulted with her other docs they agreed, they were like me caring for it would be a nightmare, but its coming I think.  We had a colonoscopy last year and they said she is very debilitated.  It took the anesthesiologist to finally get a line for an IV started.  I have to leave its so painful. They cannot find good veins.   I doubt they will do anymore.

The doc in Texas said if it got like it did before, the colon perforated she could die, yes, we are aware of that.  She almost did at age 25 when they had to do a resection.

She has been eating more salad, likely have to pull back on that, have to watch what she eats and her diet isn't good.  She would live on pasta.  But reducing her sodas, she watches and does not eat seeds, popcorn, or nuts, hubs said try telling her the docs said she cannot drink soda either, so I will do that.  Will let her on occasion, but try to reduce, she keeps getting her little pleasures taken away, sigh.

She has so many issues, not going to reiterate them here.  I was just tired last night and yes I get aggravated.  She is having this happen more often and not wanting to wear her protective garments.  That helps a lot, going to have to be tough again. 

Our hopes are we out live her, some of you will think that is horrible, some will understand. 

No, I do not think your wishing to outlive your DD is horrible.  I have a friend who has a sister that is also Obese.  She is Bi-Polar and she has ALS.  They put her in a skilled nursing facility.  My friend just had surgery on her shoulder, and I stopped by to help her with something.  My friend mentioned that her DS is lactose intolerant, but the staff at the facility that day had served her DS Grilled Cheese sandwiches for two meals that day.  I can't figure out why they would do that, but they did.  It kind of goes along with something you said in an earlier post.  The staff really must hate her, and want her to suffer.  I would think they would not do that, because someone has to clean her up, but I guess maybe they just don't do it.

It's probably not deliberate. Around here caregiving staff is some of the lowest paid work in the area. It's hard to keep places sufficiently staffed. I think a lot of mistakes get made because people are in a hurry and aren't able to pay close attention due to the understaffing problem.