Dad feels abandoned

Just wondering what your Dad's symptoms are. Does he have dementia? It is a hard transition for many, to be placed somewhere against their will. To have daughters making the decisions makes for a difficult transition, too. The emotions you experience are real, acute, and natural. It's hard on the family, as well, and requires patience, grace, and gentle, loving spirits. Prayer helps more than anything, as God can do what no human can to help everyone. I love these posts, and you will find many ideas and suggestions around the various threads. Have you talked with counselors, other family members, and support groups? There are many good books available on Caregiving and dementia subjects, as well. Everything helps. It's a sometimes rough, but ultimately rewarding road. Sometimes it's rocky, but a learning and growing experience for all. Love smoothes many troubled situations. You and your sister can comfort each other and Dad. Many of us will pray for you all as well. Thanks for sharing your story and questions. I, too am a big sister, and we have a tendency to take on a lot of the burden. So be gentle with yourself. Keep posting, and let us know how things are going. Anne

Yes, sorry Anne, Dad has dementia. In looking back, I posted when I was frazzeled. He is a danger to himself and others in that with his dementia he "thinks he's fine". So the doctors that recommended the placement "don't know what they're talking about". His short term memory and reason-ability are very impared. Correction on my first post: We weren't able to talk about it in advance because he never wanted to live if he couldn't take care of himself. Now he can't but he doesn't realize his limitations. It's a blessing and a curse. It's so hard to reason with somebody that doesn't have any reason left. What a cruel disease. We're doing what we know is in his best interest, but he doesn't know that. He just knows he wants to go home and we're keeping him from his house, his boat, his girlfriend and his dog.

Can related to your feelings. My Dad was wandering into people's houses, and getting lost while driving, and starting to get in trouble with the law, and didn't understand any of it. He was placed in a Geriatric Psychiatric Ward, then moved to a Nursing Home. His Physicians say he must have 24 hour care, and cannot be on his own. He couldn't even be with family because of his behavior with certain family members. So sad. Just visited him today, and he can't even express himself in thought. He tries, but everything is incomprehensible. I just smile and nod and repeat things back to him. He asked me questions (that don't make sense) and I just ask questions back. It makes me wonder what he's thinking. What he says is all jumbled up. He looks at a clock and says, "He is that," and so on... I just give him my smiles and hugs and presence. And when he lays down for a nap, I go home. He doesn't understand my conversation with him any more than I understand his. A little over a year ago, he was still at home and paying some of the bills. Hard to believe how much decline he's had in such a short time. The Alzheimer's is insidious.

My husband's Dad is his roommate. He is 89 and wants to get a car, a house and 10 acres for a raspberry patch, find a wife and have another family... It's not Alzheimer's, but some type of dementia, and has lost his judgment and the ability to adequately care for himself. He was over yesterday, and helped clean out leaves in my garden. He was also stepping on my flowers. He tried to ride my boy's bicycle, but couldn't. He does not, like your Dad, realize his limitations. He wants to go home, too, but was defrauded out of it.

Very sad when it comes to all of this. Neither can live with us, because we'd never sleep for fear of their actions... So we visit every day, as possible. We play Checkers with one, put puzzles together in their room, and take walks together. My son plays piano for them, and they have lots of activities at the facility they're in. We take them for drives, when they're up for it. Anything we can do to make them feel loved and cared for... And they seem fairly comfortable. There's been an adjustment period for both. They sleep a lot. Neither could survive on their own, but we won't abandon them, either. They get tons of attention from us, the staff, family and visitors. We are thankful for facilities that can care for our loved ones in such a caring way, and encourages our involvement. We're also involved in a Dementia support group there, in our town, and I find encouragement from this site.

I hope you find a good solution for this difficult situation for you and your Dad. Sounds like you have the love part in place already. Will be praying for you. Take care, Anne

There's a great book out there called the By Families For Families Guide to Assisted Living written by Ryan Malone. I've spoken to Ryan personally and he's one of the good guys. Good Luck and have Faith, Neil

Hey big sister, you wrote exactly what I have been thinking. It seems to me there should be some type of business that caters to that middle, or inbetween step from home to assisted living facility. My father sounds much like yours, diagnosed with ALZ, not aware of the depth of his problem, believes the Dr. doesn't know what he's talking about, etc. He cannot live alone for personal safety, but is not ready to be in a facility either. I cannot imagine what he would do all day, as he is really into being outside, or with family. I think going to a facility would definately caused a downward spiral, but am running out of options. I was going to try to put an ad in a medical college to see is anyone wants to study ALZ close up, and be Dads caretaker when I go back to work. There certainly is no other way to really learn about this disease until you live with it. Books certainly won't give the same type of experience. But so far I have just been kicking around the idea and haven't acted on it yet. Any comments or feedback on this idea?

Hi Neil, looked on Barnes

Hi MIssyH,

My Dad wouldn't allow anyone to live with him either because "he's fine". We found, by trial and error, a total-dementia facility. You have to go to a larger city to find specialty facilities, it seems. They had the additional "amenity" to be a locked facility for exit seekers. Many assisted living facilities aren't set up nor staffed for active exit seekers. Also, everyone in the staff is trained in dementia care, from the way the facility is laid out to how Dad is interacted with day by day. My Dad is having to leave his old life behind, where he was home with total control over everything. This part is VERY, VERY hard on him and us. He's lost most of his "logic" so you can try everyway you can think of to explain it to him, and he's just not going to get it. You feel guilty and he feels betrayed. This disease isn't either of your's fault. He wouldn't have chosen to have it and you can only do your best with what you have to work with. One thing I would suggest to you AT THIS POINT is a geriatric care manager. Again, might have to search in a larger city. These people can help with resources and "been there/done that" expertise. We haven't used anyone yet, but have a name and number from our Elder Law attorney. We're hoping this might be helpful as we've found other contacts we've had so far, to not only not be helpful, but detrimental in a lot of cases. Good luck - this sucks.

Bigsister

Tweeners are the worst, sis! Mom's making a yo-yo out of us. She lives 200 miles away. So away we go again, today. So many health concerns. She's on waiting lists, but doesn't qualify for some. Already hired help, but Mom's "fine" when they are at her house. I'm thinking dementia comes and goes in the early stages. Or... Someone needs to study her. Any takers???

Dad peered out from his blankets yesterday as we cleared out some of the heavier winter clothes from his closet and drawers. Life in a dementia care facility :( Wouldn't it feel awful to have someone pawing through your few remaining belongings (nursing, laundry services, daughter) and not be able to dress yourself or have control over anything??? Either he's wonderful at adjusting, or doesn't really know what's going on. I wish he could be home. But I'm also glad he's safe. Our other Dad (FIL) has lost judgment. Just some missing pieces, but can still communicate and knows us. I hate Alzheimer's and dementia. Thanks Sis, Neil and Missy

The book may only be available on his website - it's pretty new and worth the read. I tried to post his URL but it looks like the system deleted it. Try searching for insideassistedliving and you should find it.

Re. MIssyH's comment about an "inbetween" environment, that's the gap that the homecare providers try to fill. The National Association for Home Care and Hospice has a "consumer info" tab that can help, but you'll need to work at it - their website isn't put together very well.

I agree that the middle phase of dementia (moderate dementia) is the hardest on everyone involved - us and our loved ones. Deep inside we hold on to the hope that they might get better (or at least not get worse) because they can have "good moments"... but the "bad moments" bring changes that neither we nor they have ever experienced and you never know when they will happen so we're all totally unprepared. Its exhausting in every way. My health care experience was a huge benefit - it taught me to have no expectations and just deal with exactly what I had to deal with at that moment no matter what it was. It's still a rollercoaster but the valley's aren't as low.

I strongly recommend that everyone struggling with a loved one with dementia (whether it's diagnosed as Alzheimer's or not) contact their local/regional Alzheimer's Association. I have found them generally to be a group of committed folks who have a wealth of information, insight and experience and they know the local care providers.

I also want to urge everyone to be ultra-cautious and ultra-diligent about the care their loved one receives. Learn and watch for the warning signs of abuse. At some point you will not be able to rely on what your loved-one tells you and it will be completely up to you. Make a quick and thorough visual, physical exam a part of every visit regardless of how uncomfortable it might be for you. There are good facilities/providers and bad facilities/providers (believe me...I'm in them every week) - but remember a grand piano in the lobby does not equate to good care. Care isn't given by the administrator, the marketing/sales person or the admitting nurse. Care happens at 4am when your loved-one wakes up confused and combative and it is delivered by the Certified Nursing Assistants (CNA's).

Bigsister, it is so difficult to see our dad's decline. Especially when all of us girls are daddy's little girl no matter how old we are.

My dad, when he was somewhat lucid, agreed with the attorney that he wanted me to provide for him. Problem is, my dad is old school Greek. Girls don't provide for the men no matter how they feel or love their daughters.

I'll never forget his rage when he was in assisted living and I came to pick up some papers from the facility that I needed for a 2nd apartment (LONG story there). They had the papers for me at the reception area and dad caught me while I was there. He asked me what I was doing and I told him I needed to get some papers. He asked what for and I lied saying it was insurance information (he wouldn't have understood a 2nd apartment). He got so furious with me that he worked for the insurance company (which he had), that I didn't have to worry about a thing. The insurance company does it all, etc etc and he got so mad he was in tears. The poor receptionist felt so bad they called a caregiver to come distract dad from the conversation, which worked.

It broke my heart. You do what you know is best. He will adjust and if the facility is really worth any weight in gold they will work out a plan with you. I had to fill out a mountain of paperwork with hobbies, likes, dislikes, foods, you name it I had to think about it. They worked out a plan based on his needs. Their motto is that they want to make the assisted living as much as their home as possible but with the assistance.

Take comfort in that while you do what's necessary. God bless.

MIssy- that is a great idea I think social workers in college have to interm-one of the support groups I went to was run by a student for 6 weeks and it seems that it would be a great idea for students going in social services to see first hand what families have to deal with in there own homes for a few hrs for a period of time after all nurses have to do clincial- it was called that in my day= in a hospital before they graduate for experience-it would be a great learning experience for docs also. If your father has to go to a N.H. see if they have gardening there the ones around us do when the husband was in rehab the only time he did not piss and moan was when he helped set up a garden with the activity director for rehab pts. and long term pts. he was experienced in gardening and she was new there and he felt needed for that period of time and was most excited by even we are in the NE and don't have a long growing season and the adult day care in our senior center also do gardening.

Let me also add how glad I am to have found this site. Finding people with like experiences is great AND also reading through some of the other posts, may not necessarily be what I'm dealing with, but very interesting. These dramas may never make a reality show, but for those of us who this IS our reality, the spectrum of emotions run true from situation to situation. I gain strength from the advise, especially those who have had to make very hard decisions - based not necessarily on what their loved one wants, but what is in their best interest, like it or not.

When I signed the Power of Attorney, I promised that I would take care of Mom and/or Dad. We never guessed Dad's dementia would be the kind where he "thinks he's fine". So I've had to steel myself to the fact that I'm going to be the bad guy. Very hard for a Daddy's little girl who never told Dad he was or wasn't going to do anything. I think I'm going to have to petition for guardianship because our POA is revokable. Our Elder Law attorney said the medical one could be revoked if Dad has a good day and appears "of sound mind". The financial one is harder because he'd have to prove he could enter into a contract. Unfortunately, it's the medical one that covers keeping him in an assisted living facility and not going home. He still wants to get back to his life, doesn't understand why he can't, is calling his attorney to see how "they" can keep him against his will. At this point, he doesn't know that "they" are my sister and me.

O dear! Difficult days for you. Dementia gets worse, and in time, you won't have to "fight" Dad anymore. At least that's how it worked for us. There was a lot of bravado at first, but now, a wimper. So sad, and so tough to make those hard decisions. My sister and I cry, but ultimately it's up to me. Guardianship is the most difficult way to go, especially Conservatorship. If you can avoid it, do so at all costs. Getting the courts involved is absolutely to hardest way to go, according to several attorneys I consulted with. Find one you trust. The ones who gave me the best advise didn't charge me a dime. Be strong

I don't know how to avoid the guardianship. When my Dad talks to his attorney and the attorney advises him he can revoke the POA and go home, I don't know what else to do. Is there any other options out there?

In my area there are some homes that are set up to care for several elders and they will take Alzheimer's patients. It's their job, so they have people awake 24 hours a day. There are even a couple out in the country where the people staying there can garden and be outside a lot, with supervision, of course. I know this isn't an option everywhere, but a call to social services may give you some information as to whether such an option is available in your area.

Carol

Dear Bigsister, I guess I should qualify my last post to you. Getting Guardianship is not as bad as getting Conservatorship. In fact, perhaps you should go ahead and get Guardianship, if you can. I mean, if you can establish his incompetency. I got Dad's Doctor to write a letter stating that Guardianship was recommended. The court took that seriously, along with my list of observations. I did not pay a lawyer a penny, but was directed by a lawyer to go on my own and file a petition. No reason to pay a lawyer for something you can do yourself. In my mind, a daughter makes a better Guardian than some Court-appointed stranger (no offense to any Guardians). But who knows your Dad better than you?

Conservatorship is a different story. That's the one to avoid at all costs, if you can. The court will want every single penny accounted for. And receipts to prove how the money was spent. A year's worth of receipts and records is a nightmare to keep track of. Several lawyers told me to avoid it. POA doesn't require the paperwork, unless Social Security is involved; then they get a report. I hope that cleared things up. But you need a lawyer to get POA. And that can be costly. I was told by the court to shop around. Great advice (and free, too)!

Thank you Anne for your continued monitoring and wisdom. Makes me feel supported during a time when I'm zigging and zagging with my on-site support people (husband and sister). I waffle between wanting to vent and being so tired of talking about it............ I'm sure everyone has had these feelings too.

I find I have to argue about why I feel the way I do and justify my position, kind of like a daily debate. Because he's my Dad, I've known all along how he will respond to these situations, and to date, have been right on every count. Why, then, do I have to keep up the debate? It's exhausting. Found myself just wanting to pull the covers over my head this morning and not get up to face the challenges of today. Again, I'm sure everyone has had these feelings too. And it's so early in the process for me. Looking for one little positive among all the negatives that are surrounding me right now.

The sun is shining this morning - one for the positive side.
Love

Dear Bigsister, my wisdom is from God, alone, and from the wisdom of those who follow him. I have to pray for his guidance, and trust that he is guiding me in the way he wants me to go. Mom doesn't, and that's why she struggles. When my sibling disagrees, I can rest in the assurance that God will make things right with her, and he is!!! That's the amazing thing! He makes the crooked paths straight, and comforts the broken and contrite spirit. I get my strength from him. God bless you as you seek his direction. I can relate to pulling the covers up. I was tired at 6:30am, but there's much to do today, so I'm relying on God's help. Praying for you Caregiving angels, as well. We can't do this alone.

BigSister, you are so right about having the same argument continually, and how exhausting it is. You know your dad and have had your say. Anne's post is a good one. We're hanging in there with you.


Take care,
Carol

Our Dad's psychiatrist described his dementia where Dad "thinks he's fine" also as "unconvinceable". He's still very stressed over his loss of independence and control over his own life. Even though the assisted living facility requests that residents don't have anything of value, Dad really wanted his wallet and money. We decided to give him his wallet with lots of ones. We photocopied anything that would be trouble when it's misplaced. Now he wants his ATM and credit cards. Anybody had any luck with any redirection or anything of this nature?

Well, I had the same problem with dad while I lived at their house. My father has Alzheimer's and he insisted on having his wallet, money and driver's license. So, what I did was made a color scan of his driver's license and marked the back of it with permanent marker that he had Alzheimer's to please call me with my phone number (in case dad wandered and got lost). I put about $15 dollars in 5's and singles to help ease his mind, but always checked his wallet (had to find where he hid it - burrowed things constantly) and he was satisfied. I even gave him a set of keys from 20 years ago so he couldn't lock me out or get in his car accidentally or get into the safe (he constantly tried to open).

So my thing would be is to make something that looks real to him or give him an expired card to use (but notify the company first of how you are using it - so no legal problems).

We cannot change their perception of reality, but we can adjust. :)

Dear big sister, I am guardian/conservator for my dad. The conservator part allowed me to cancel all his credit cards. I have done that, and paid off all his charges, which at one point totaled $10,000. It could have been much worse, if I had not caught it when I did. I worked for 11months straightening out his finances and am still not done. I know some have said that conservatorship is not the way to go, but it gives you more control, so they don't become out of control. Just my opinion. Good luck to you bigsister, we are here for you.

Thanks mitzipinki and Naus. I knew I could count on you guys (girls). The suggestions I was getting here locally were well-meaning, but not working for me. I know what you mean about working on the finances for months. I called his credit card company - they didn't really care that I had a Power of Attorney for my Dad in our state because they were located in another state. So, that's what the conservator is for! He has so many bogus monthly charges, some for small amounts, but after months and months, they add up.

Bigsister, I totally know what you mean.  I had to get the fraud dept. of all his credit cards involved because he was making charges, and then forgetting he ever did so, and said he didn't.  I had to have the credit card co. send me copies of all of his transactions.  I must say, that when explaining my situation with my dad, Discover Card was wonderful.  They understood, and even before I had conservatorship they were very helpful and would speak with me in all regards about his account, even though they are out of state.  And yes, those small charges added up.  He was signing up for every charity, magazine, book club, etc.  And when I told him to stop, he kept doing it.  He would get phone solicitations and end up giving them his card number.  I had to have his card changed three times before I got conservatorship, but before that he moved in with me and I could limit his phone use, and no more charges were incurred. However he used to tell people that I wouldn't let him use the phone period. Funny, I never said he couldn't, but he never touched it, unless he had a phone call come in for him LOL. Good luck Bigsis!

Well, we got totally blind-sided by our Dad's geriatric psychiatrist today. We met with him (without Dad) less than a week ago and shared our concerns about Dad's insistence about going home and our reservations about it. The psychiatrist agreed to be the "bad guy" and require Dad to stay in assisted living while starting him on a new med. to monitor any adverse reactions. Dad was sure he was going to get a clean bill of health at this appointment and all he needed was a ride home (2 hrs away). The doctor told Dad it wouldn't be a good idea for him to go home after starting this new med. and called for a vote from us for who thought it was O.K. for Dad to go home. Of course, Dad's hand flew up and then he was really mad when we didn't support him! We were in shock and totally caught off guard. I'm still seething and will have to reascertain some assemblance of control before I call this doctor and give him a piece of my mind.

Still haven't figured out what the psychiatrist was thinking "calling for a vote". The only reason Dad is at the good level he is - is because he's been in the assisted living with regular meals, meds appropriate and on time, daily stimulation and sleeping at night.

Unfortunately, he is clear enough to carry on and on and on about going home. There are several reasons why going home is not an option. He caused his last delirium by falling into his old routine of drinking, deciding to take supplements instead of his physician prescribed meds, and eating only noodles.

Soon, he'll be visited by the court appointed temp guardian to explain that we have petitioned for guardianship. He will contest this appointment and we'll have to go to court - this should be interesting. I wish we could have avoided having a judge tell Dad he is no longer competent to be his own person. I think he'll be devastated. I wish there was another way.

Dear Bigsister, I feel for you and understand. I'm the "Feisty Firstborn," and have had to face similar issues. It is definitely not easy. I felt like Chicken Little, especially trying to get others to see and agree about what I was seeing. Leading the charge is no fun, because that means people are shooting at your back. I hope you have specific examples and documentation to take with you into court. It's crazy to not have Doctor's support, but they have limited knowledge of what is happening in someone's home, and the 15 minute window they have for evaluation and diagnosis is not adequate at times. Cover everything you do in prayer, because it's assuredly a walk of faith. Stay strong with your convictions, and don't forget to take care of yourself.

BigSister, I wish there were another way, too. But you are doing what is best for your dad. You'll always know, hard as it's been, that this was your intent. It's devastating when you are second-guessed by people who don't have all the facts, or even care to get them. And Anne is right about doctors not being able to know what goes on around the house. They have their fifteen minutes or so with the patient acting his best, and that is all. It's the primary caregiver who knows.

You are a tough cookie and you'll have to remain so. Keep us up to date on how it goes.
Carol

The fun just keeps on coming. My Dad's attorney called and advised him that he doesn't have to stay in the assisted living facility. He also advised him that my sister and I have filed a petition with the court to have him declared incompetent. Dad is as clear as he can possibly be because he's been in the facility with regular meals, meds and sleep. So, I'm sure he thinks his nightmare just keeps getting bigger. We can't expect the facility to get involved as it's not their fight.

Unless we can get an emergency temporary order from the court, based on information we submitted with the petition, we think his girlfriend will pick him up and take him home tomorrow. Then we don't know how the temporary guardian will deal with him 2 hrs away and if he'll show for his court appearance. Dad doesn't have any regard for authority as he's already driven his car after the state revoked his driver's license and the doctors that think he's not safe at home alone just don't know what they're talking about.