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Dealing with Alzheimer's in the Family

Same thing for an aunt I loved dearly. She clearly specified DNR, her doctor and the hospital had the signed instructions. Three times, THREE times, they intubated her. Finally, she was put in Hospice and passed away about 2 mos. later.
 
Not until we got her on hospice did all the heroics stop. Even then I had to reign them in sometimes. ... Heaven is way better than dementia.

Same thing for an aunt I loved dearly. She clearly specified DNR, her doctor and the hospital had the signed instructions. Three times, THREE times, they intubated her. Finally, she was put in Hospice and passed away about 2 mos. later.

That's good to know. I didn't get the feeling today when I signed the papers that this facility would do that but I will pay more attention. They did say they would call me if anything came up and I could make decisions on a case by case basis. I wasn't sure about the antibiotics. Dad is still alert and oriented. If he were completely lost, I wouldn't hesitate to specify no treatment including no antibiotics.

I admitted him today and cried through the whole thing. I know I did the right thing. I just wish I didn't have to be the one who did it. Three years ago I promised him I would never put him in a nursing home. Shouldn't have made such a rash promise but I didn't know then how things would work out. I'm very grateful that we were able to have him in our home this summer. And I am even more grateful that there is an excellent care facility close to my home so I can visit him often--and that he can afford it. The admissions person was very sensitive and had no problem lying to him, "your doctor wants you evaluated and medicare is paying for it."
 
I just got back from a short trip. Rose Pink, you have dealt with so much lately. My dad passed away from Parkinson's in 2008. It was so hard to see him cope for years with the lack of understandable speech, even though I knew he was thinking of what he wanted to say. He finally died from lack of swallowing. He indicated clearly he did not want a feeding tube or an IV for fluids and although I was very concerned about his comfort level, the hospice nurse told us that he would be comfortable and he was. He was at home with 24 hour care, fortunately, he and my mom had both a long term care policy and a good income. All 3 of us kids got to see him the night he passed. I still miss him so much. If he doesn't want a feeding tube or IV for fluids to prolong life, I think it needs to be written down and clearly posted unless he is in hospice care.
Liz
 
Once he gets over the shock of the move, I think he will enjoy the attention and activities--IF he can stop worrying about the money. He told DD tonight that he couldn't get a job any longer to earn money to pay for it. When she told him he already had plenty of money, he said he'd already promised it to his children. And round in circles we go--again.

One of the things that I found that helped my father in law was to still have his wallet with pictures in it and a few dollars. As he declined, cash was the only money that he understood and several ones was more reassuring than a big bill. He did not have any place to spend it, he just liked having it.

elaine
 
The cash and wallet is a great idea. My mom was always terrified of being broke, so I made sure she always had a few bucks. Many times when I checked it was gone (she had no place to spend it so I assume it was... :( ) but it was worth it to me to replenish it each time.

Hang in there. You're a real saint. And keep us posted. I always enjoy your posts.
 
My prayers are with anyone helping or taking care of someone with AD.

I took care of mom with that dreadful disease after dad passed. Have a sibling who did nothing but visit once a week(maybe) for 10 minutes and got irritated with mom and snapped at her.
I never had to make the decision to put mom in a facility(though I should have) it was made for me once mom fell,broke shoulder and needed to be in facility for pt. She went downhill quickly from there.

Being with mom most of my waking day took me from hubby,kids,house,and job and depleted savings and I would do it all over again without a 2nd thought.

Mom being in a facility didn't make life any easier(except to sleep a little better at night) as she would cry for hrs unless I was there,would not partake in any social events w/o me,wouldn't even try food served unless I ate as well with her and she had many UTI's that I would catch the early warning signs before staff so I was afraid to miss a day.

She also needed to know she had a few dollars in her wallet and needed to know her purse was close by. Before falling she loved to walk and go out w/me daily so even at her weakest state she wanted to be sure her sneakers were close by. Sometimes it made her happy just to have them on(even in bed). Guess it made her feel the possibility of going out was there and made her happy.

In the end her brain just stopped letting her know she was hungry and she stopped eating always saying she was full. After many rounds of IV to rehydrate her only to have her refuse food again I realized I was being selfish keeping her alive by IV. I brought Hospice in for quality end of life. Hardest thing I have ever had to do in my life and still question myself about it. I was lucky enough that before morphine was increased I had 2 good days with her the way she was yrs ago. She told me I was a good daughter,she loved me,to make sure I was the one to handle her affairs and she hoped she was a good mom. We had the most lucid conversations we had in yrs. Calm before the storm.
When she passed I felt it was the 2nd time mourning for her as for yrs I had mourned the mom I use to have.

It is not easy caring for someone with AD or being the one to oversee the caring. Just be patient,know it's not their fault,not your fault and you can't fix it.
If you tell your loved one something that brings a smile to their face or makes them laugh tell that same thing over and over again. You may tire of it but they won't. Don't try to force them into your world but step into theirs.
Repetition helps. Mom loved to fold towels over and over again and even in facility loved folding things so staff would bring towels,her clothes and johnny's.
When able mom loved to string cherrios on yarn and then hang out for birds. I'd make a "needle" out of end of yarn w/a little glue.

I know it's hard and you think you just can't do this for one more day but look into your loved ones eyes for that glimmer of who they once were,if they like contact then touch them often. A confirmation of your hard work may be slight,few and far in between but it lets you know you are doing the right thing,you are appreciated and most of all making their very hard life a little better
 
It is not easy caring for someone with AD or being the one to oversee the caring. Just be patient, know it's not their fault, not your fault and you can't fix it.

Thank you for this beautiful post. You said a mouthful. My Mom didn't have AD, she was a stroke survivor and her eggs were pretty well scrambled too. I spent several years with her life ahead of mine. The end result was the same. I don't regret a minute of it.

Jim Ricks
 
Jim

Didn't want it to seem that I think only caregivers of AD loved ones have a gut wrenching time. Being a caregiver of anyone is so difficult and made harder when the mind is affected and they really can't make any decisions .
Those decisions a caregiver has to make are haunting,the time taken away when we put them 1st can never be replaced but it sure helps to know you did all you could and hopefully brought them some comfort.
 
At ... times he calls me by his daughter's name, not my name. I chalk it up to dementia....

My Dad used to get me and his sister (my aunt) confused via names and physical presence. The live-in aide knew this (as did I) but it confused my visiting siblings terribly. Auntie was profitting on his confusion by visiting and taking sentimental things for safe keeping to her house. :mad:

Funny Story: My sis with her MPOA had just checked Dad out of a 7 day hospital stay and we immediately departed for another state (we rented a nurse's aide in her uniforrm to assist in our plan). Crazy Auntie shows up at hospital and finds his bed stripped. Throws herself on the bed, whaling how no one had called her about her dead brother. Floor staff comes running and say that the family had moved him to local nursing home via presence of this aide. Auntie drives to nursing home where they have no idea what she is talking about. She calls the police to nursing home and forces a census with herself, police officer and nursing home manager (physically checking each resident). It only took us 20 minutes to drive to the next state. Can you guest the reason we had to move him to another state?
 
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High thyroid levels and alzheimers/dementia

Hi,
I'm not sure if this is the right place to post this or not but we just found out that my mother, age 76, who seemed to have a sudden onset of dementia about 2 yrs ago was just told by a neurologist that she has such a high level of thyroid hormone that this might be what is causing her short term memory problems. She repeats the same question many times in a short period of time, and has trouble remembering where things go in the kitchen cabinets but knows everyone, knows what everything is, can carry one a resonable conversation and remembers important things like she will be a great-grandmother next winter. Back to the dr.....she 'mentioned' that if indeed this is the problem, it could be treated by knocking out her immune system since she says that such an excess of thyroid hormone causes the body to attack the brain. And of course there are risks. I thought the treatment for overactive thyroid was surgery to remove it. She is to have an MRI, EEG and ultrasound with a return appt in Oct. I'd like to understand before Oct.
Has anyone heard of this before or have some idea of what she might be talking about.
 
Hyperthyroid dementia

The first aspect of diagnosing a dementing disease, especially AD, is to eliminate as many physical, potentialy reversible, causes as possible. AD is generally a disease of exclusion. Exclude every other possibility and AD is what remains.

Hyperthyroid dementia would/could fall under what I would call 'potentially reversible dementia'. There are many such conditions whose symptoms mimic AD, VaD and FLD.

A dementia specialty team is one aggressive way to diagnose and treat symptoms. They attack the problem from the physical, psychological and genetic perspectives in a coordinated effort. The team at UCSF, in my prior example upthread, is one such team. Very thorough and very effective.
 
Well that sounds encouraging but I'm still wondering why they would need to knock out her immune system. I'll keep reading about it and maybe I'll hit upon something. Thanks for the info.
 
Tip: If something doesn't sound right, get a second opinion. I was flailing around aimlessly until I found the docs at UCSF.

On a good note, mom had her eyes open today and was moving around a bit. Not much fluid intake so she's still declining but at least she appears comfortable. The facility was training CNA's for crane transfers with the lady in the next bed and I enjoyed talking to the students and watching them interact with the patient. Finalized her funeral arrangements. Kinda wierd doing that.

My opinion is that there are blessings in every challenge. All we have to do is find them. I saw a bunch of them today in the eyes of the young students. With endings there are new beginnings. :)
 
To the OP

... Soon we are likely faced with putting my grandmother in an Alzheimer's care facility. ...Janna
Janna, do you have any updates for us? Have you found a place you can feel comfortable with? I am keeping you in my thoughts and hope you can find peace with your decisions.

A friend of mine who has worked in a SNF told me that it is important for family members to have a regular presence at the facility. The more the staff sees you, the more attention your loved one will get. You don't want to be hostile or demanding but just let them know you are there.

Best of luck to you.
 
Predators of the Demented Elderly

Many of my patients with dementia develop the problem gradually. They slowly lose the ability to manage their financial affairs. There are numerous predators who obtain lists of people in a community, such as ours, of people over the age of 80. There is about a 1 in three chance that such an individual may be developing some kind of dementia. These diabolical monsters approach such individuals and have them sign over power of attorney. All of a sudden the will is changed and the predator is getting all the social security checks mailed to him. I have seen several elderly people lose their homes because of this scam. It is all perfectly legal. When the families find out that granny is out on the street, they have to prove that she was incompetent at the time she signed over power of attorney if they want to regain control over granny's assets before they are completely stolen.

The usual way I get involved is that granny or grandpa is urinating all over the floor. The family is convinced that the problem is the bladder. However, granny or grandpa do not know who the president is nor can they subtract 97-3. When I suggest that there may be a dementia, the family becomes hysterical and say that my father or mother is as sharp as a tack. The family then goes doctor hunting. Two years later they want my medical records to prove that granny may have been demented at the time she signed over power of attorney to some predatory monster. However, by that time, it is too late. Denial ain't just a river in Egypt.
 
The usual way I get involved is that granny or grandpa is urinating all over the floor. The family is convinced that the problem is the bladder. However, granny or grandpa do not know who the president is nor can they subtract 97-3. When I suggest that there may be a dementia, the family becomes hysterical and say that my father or mother is as sharp as a tack. The family then goes doctor hunting. Two years later they want my medical records to prove that granny may have been demented at the time she signed over power of attorney to some predatory monster. However, by that time, it is too late. Denial ain't just a river in Egypt.
Fought that battle with my SIL (Dad's daughter). I had five or more docs say he had dementia (although they disagreed on which type) and she still didn't believe. I explained to her, among other things, how Dad couldn't complete the clock drawing. She then sat him down in his own house and had him draw a clock. Voila! He could do it according to her. Her explanation: Dad was just nervous at the doctor's office. :rolleyes:

She just didn't understand dementia (and I had to struggle with it myself). Dad is alert, oriented and knows who we are. He can repeat what he's heard on the news. He remembers some things better than I do. But sometimes things don't add up. I think we fill in the blanks for them and that is why we have trouble recognizing dementia. It isn't all or nothing. And, sometimes, we just don't want to see because then we are obligated to do something about it.

I realized that Dad had trouble problem-solving. Tell him three things and he couldn't juggle them all. I started monitoring his bank account on-line. He did pretty well most of the time but didn't step outside the norm. He continued to write checks for his usual bills but couldn't always find them on his bank statement (they were there). We warned him repeatedly about door-to-door salesmen and scams. It worked to his advantage that he has always been very frugal and reluctant to spend money. Finally, he realized that numbers weren't always making sense to him and he handed over his finances to me--against his daughter's advice.
 
One of the things that I found that helped my father in law was to still have his wallet with pictures in it and a few dollars. As he declined, cash was the only money that he understood and several ones was more reassuring than a big bill. He did not have any place to spend it, he just liked having it.

elaine

The cash and wallet is a great idea. My mom was always terrified of being broke, so I made sure she always had a few bucks. Many times when I checked it was gone (she had no place to spend it so I assume it was... :( ) but it was worth it to me to replenish it each time.

Mom being in a facility...also needed to know she had a few dollars in her wallet and needed to know her purse was close by.

I thought I had dodged this bullet. The facility does not want the residents to have such valuables for obvious reasons. I did not want Dad to have his picture ID because the facility is only yards away from a branch of his bank. It would be all too easy for "someone" to take Dad out for a field trip and have him withdraw cash from his account.

Well, today Dad asked about his wallet and said he needed it in case he had expenses and that Christmas was coming up. I told him I'd bring his wallet. I will try just putting in some cash--he is used to having twenties and I'm sure he'll notice if there are only ones. I am not worried about a few bucks being stolen. I am worried about the picture ID allowing him to be identified at the bank branch. I know he'll notice if it is not there.

Today, just before lunch, a cute little lady wandered into Dad's room and told me she was hungry. I invited her to come with us as we were going to lunch. As we walked to the dining room, she commented on how nothing looked familiar to her (all the halls look similar and Dad gets lost whenever he leaves his room). Then she asked about paying for the meal since she didn't have any money with her and she didn't want to be embarrassed. I assured her that we had been invited and so we didn't need to pay.

I can try telling Dad that there is nothing to spend money on where he lives but that won't take away the nakedness he feels without his wallet and some cash.
 
NO picture ID!!! No credit cards!!!

NO picture ID in the wallet - just pictures. You are absolutely correct that the items in the wallet will go missing - that is not an if. I had to restock George's wallet periodically and there was nothing for him to spend money on. Your FIL is still lucid enough to get the concept that you will take him out for Christmas shopping. His picture ID and credit cards need to stay with you. His wallet (without ID and credit cards) and a few bills can stay with him.

I do not know how we came up with the concept of the wallet with pictures and a few bills in it worked, but it did. Your father in law can still get the concept that someone can steal from him so that the credit cards, ID and big bills will stay with you - you can get a new or different wallet for his "going out" wallet that has his ID, credit cards and more money in it. We did this and it worked great.

When we would take George on outings with us. We would give him his "going out" wallet the one that he knew that we kept locked up in our safe at home. The first few times, we would pick him up, go by the house, ceremoniously unlock the safe and let him get out his "going out" wallet and put it back away before returning to the nursing home. As he got more feeble, we would just bring it with us and ask for it for putting it in the safe as soon as we got back to the nursing home. I was always afraid that he would get re-attached to it if we left it with him for even a few minutes once we got to the nursing home.

We would normally pay for meals when we went out. But sometimes he would want to do so. With his credit cards intact in his wallet, he was able to do that.

elaine
 
Someone at the nursing home suggested play money but I told them Dad would notice. She said there are some very realistic looking fake bills but wasn't sure where to find them. Anyone know? (and I'm not talking counterfeit, haha)
 
Someone at the nursing home suggested play money but I told them Dad would notice. She said there are some very realistic looking fake bills but wasn't sure where to find them. Anyone know? (and I'm not talking counterfeit, haha)

If you have the time :) , use a coloured photocopier. Copy money and his cards. If your copied money looks counterfeit, put a little sticker on it (before copying) with tiny writing explaining that it is for the express use of Mr. ..... (or something that makes it clear you are not attempting to break the law). Try laminating the copies of the cards for a more realistic item (trim the corners so he doesn't scratch himself). Make lots of spares too, they will get borrowed.
 
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Open your eyes and SEE.

Janna,
..... This may sound odd, but while visiting a facility, look, listen, feel and "sniff".As a 30+ year nurse (RN/NP), I know that this is a tell-tale sign of good or potentially bad care. Do it on return trips to make sure that they weren't having a rare, bad day, understaffed day as it does happen in even the best of places. If the staff is hanging around chatting whilst the residents are leaning over in wheelchairs, ask why. If the smell of urine persists, ask why.

I shopped around for a good place for my Mum, unfortunately, I was taken in by the first one that had oriental rugs, nice chandeliers, floral arrangements in the foyer. They gave a great first impression, but neglectful care despite a high state rating. I took her out of there and brought her home until I could no longer transfer in/out of bed safely. I found a great place and she has been there for 3 years now and is well taken care of.

Best to you during these difficult days.

Janna

Beaglemom3 makes some very important points which I would like to add too. It is important to thoroughly look at the residents when selecting a home. Talk to residents if you can and check the following -

Can they hear? If a hearing aid is fitted does it have a working battery?
Can they see? If they have glasses are they clean and within reach if they are not wearing them?
Are their teeth clean? Is their face clean?
Are their false teeth fitted, and if so are they fitted comfortably?
Are they dressed appropriately for the weather, is their skin cold to touch or are they red in the face?
Do they smell of urine, body odour, dirty dentures, greasy hair, UTI.
Are their fingernails trimmed and clean?
Is their hair clean and brushed?
Do many of them have bruises?
Is their incontinence pad so full you can see it sagging when they walk?
Are their walking aids placed within reach if they are sitting down or do they have to walk to get them?
How many are underweight?
Are the 'busy ones' happily occupied (folding clothes, nursing dolls, playing with 'toys')?
Are there a few too many zombies?

Hope this helps.

Oops, just realised that this is an old thread. My apologies everyone :eek: . Thought I would leave my post anyway in case it is of use to anyone.
 
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Ellen, is your dad getting treatment? If he isn't he should see a doctor and get started on the Alzheimer's medications. They can't cure it, but they can help it be more manageable and less symptomatic. I saw a lot of improvement with my mom with the Nameda, although the doctor did tell us we would need to observe and note all the changes, because it is by observation of caregivers that he would find the right dose.
Liz

No, Liz. We're not sure it's Alzheimer's and we don't want to know. So far he's doing okay - he can still play bridge, carry on full conversations, etc. If he found out that he did indeed have it, he would become so depressed. We're riding it out for now... I will remember about Nameda if and when the time comes. Thanks, Liz.
 
Oh my. I have learned so much from reading this thread. Thank you to everyone who has been so generous in sharing their knowledge, recommendations, and life stories.

Just in reading this thread, I think our family needs to be more involved with my father-in-law. He is 89, and I have noticed that although he does well in most things & does not have any health problems -- he is not really able to make decisions anymore. Restaurant menus overwhelm him, and he'll just order whatever you're having.

A widower who did not enjoy being alone, he's now got himself a new love and moved into her apartment in the city. She's a real sweetheart, also in her 80's, and they seem very happy together. But, we (the family) worry about his finances. We have always encouraged him to hang on to his house in the suburbs. It's his nest egg, should he need money for care at some point. We worry that if he sells that house now, the money will just somehow just be gone, dwindled away, swindled -- many bad potential outcomes.

Reading all these posts, I can understand how his house is probably a huge burden that he would like to be done with. But how to do it while keeping that huge pile of cash safe from swindlers, or donating it to his church, or just being frittered away? He is always going to those awful free financial planning seminars, even though we beg him not to. He's drawn like a moth to the flame, and it's terrible the way those guys absolutely PREY on seniors. He seems to be forgetting that the house/money is for his long term care.

To all of you who have been taking care of your loved ones, may God bless you! You are awesome, and you inspire the rest of us.

--- Rene McDaniel
 
Reading all these posts, I can understand how his house is probably a huge burden that he would like to be done with. But how to do it while keeping that huge pile of cash safe from swindlers, or donating it to his church, or just being frittered away? He is always going to those awful free financial planning seminars, even though we beg him not to. He's drawn like a moth to the flame, and it's terrible the way those guys absolutely PREY on seniors. He seems to be forgetting that the house/money is for his long term care.
--- Rene McDaniel

Probably time to be setting up a conservatorship. Not so much to keep him from having what he needs/wants (it's HIS money), but to assure that he has enough for his lifetime needs. Most seniors have days when they are more lucid than others and you- or another trusted loved one- can discuss it with him and an experienced elder-law attorney. Tell him it's another financial planning seminar- just a one-on-one session.

Welcome to the world of elder-care.

Jim Ricks
 
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