Stage 6:
Severe cognitive decline(Moderately severe or mid-stage Alzheimer's disease)
Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:
Lose most awareness of recent experiences and events as well as of their surroundings
Recollect their personal history imperfectly, although they generally recall their own name
Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces
Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet
Experience disruption of their normal sleep/waking cycle
Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly)
Have increasing episodes of urinary or fecal incontinence
Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding
Tend to wander and become lost
Mother has now entered stage 6. I think I should tell you that there are only 7 stages of this disease. I haven't had an uninterrupted night's sleep in over a week. Some nights it's only once, other nights several times. I'll hear her door open and close, or she'll open it and actually come out. Sometimes disoriented, other times crying. That's another reason I've been so tired lately. We (Bebo and I) think we're probably looking at 6 months to a year before nursing home time. We're going to go around and look at places soon and get on some lists. After she goes in to a home, well that's where my life takes a dive. I feel like I'm standing at the edge of a cliff. You see, until this last year, my entire life has revolved around taking care of my mother. I have to admit to being scared of that yawning abyss that awaits me. I have no real "support yourself" skills, my siblings want the money from the sale of the house - so I'll be pretty homeless. I've made them promise to give me a year in the house to get a job and my life together. Thing is, this is my home. We moved here when I was 8 1/2. My siblings are older - in fact, my sister has probably only lived in this house 1 year; David lived here for 7 1/2 years. I have lived here for 31 years of my life. It's morally more my home than theirs. But the will leaves it to all of us. Anyway, sorry to have dumped all of this, just thought I would let you know where my mind is now.
And if you haven't been here since last week - you need to check out Sunday's post.
37 comments:
Oh Eve. I'm so sorry to hear of your Mother's decline.
As for your siblings, I'm sorry to say it sounds like greed is rearing it's head. Where were they when your Mom needed/needs so much help?
I wish there was something I could do to help you. Please know that I'm sending good thoughts your way.
Brandy - my sister is the only real selfish one. In the beginning she would help only when it was her turn - if I needed her to step in she would if it were "convenient". Now she's in a nursing home and can't help me anyway. David lives in Missouri and helped me financially. He's the executor and he did say that no one would throw me out and then he turns around and says stuff like the cats are ruining the resale value of the home. (Which they aren't - he just hates cats). It's just scary - this uncertainty.
*hugs* I'm sorry to hear about what you're going through and what's most likely ahead.
Bailey, I have one word for you - LAWYER - and make a quick appointment. It doesn't matter that your brother is the executor, you have rights and you need to find out what they are asap. Do you hold power of attorney over your mother's health and finances, or does he? Seriously, I have your best interests at heart, you need a lawyer to protect yourself, and yes, get her on some nursing home lists asap. Stage 6's are usually in homes by now. (have had relatives with Alzheimers.) My dear, no wonder you can't write, with such stress! Holding you in prayer.
I'm also sorry to hear what you're going through. I much as I know life is not fair, I can't stop myself from wanting it to be!
I always liked James Stewart!
of course I wanted to say "As" and not "I"
Eve, I don't want to be a downer, but Laurie is right. You at least need to get an agreement in WRITING from your family that you can stay in the home for a year after your Mom is in te nursing home. I've seen what families can do to each other after one is ill. Please, protect yourself. It'll be one less headache later on. (And it'll be best for your future, less stress of unknowing and uncertainty.) We truly do care about you. (Hey, my kids ask me how you are every day! (you and Michele, too.)To make a long posst short. (too late) We care!
{{{Hugs}}}, hon. My mom has suffered from dementia for quite a few years now, so I've an idea what you're going through.
Agree--get your siblings to sign that agreement. People have been known to do ugly things in the midst of their 'grief'.
And please don't take this the wrong way--but you're wrong. Your life won't necessarily "dive"--just "turn".
You're probably a lot stronger than you think you are.
Major (hugs)
And I also endorse the advice about "getting it in writing". The potential to get more $$ brings out the callousness in people, family or no.
I second Raine's comment - you ARE stonger than you think. Look back at what you've dealt with and accomplished!
Trial by fire - it either consumes you or you walk out a strong and sassy Pheonix.
Spread your wings woman,eventually, you're gonna fly.
I'm sorry you are going through this, but thanks for sharing with us just how painful this experience is.
I don't know what kind of equity is in the house, but is there enough to refinance enough to pay off your siblings that would have you on the street? Then it could be yours, but then of course you have to start paying it back.
Not that this is important, but I updating your link.
Oh, I just read the other comments. Do protect yourself. Once my mom passed away, it was everyone for themself. It was UGLY. There is no such family until everybody gets what they think they deserve.
Seconding Laurie here - you need something IN WRITING. Regardless of executor status, there's power of attorney: as you're the one doing the caring, you really should be the one who has that power. Your laws are different over there so I can't give any advice, just moral support. Do you have any organisations that give free legal advice? (eg in the UK we have the Citizens' Advice Bureau)- having a quick chat might help you find out exactly what your rights are etc.
Anyway = for what it's worth, am thinking of you. Hugs.
Oh, Bailey, hugs to you. You are so strong!! To take care of your mother through this illness--tears come to my eyes. I agree with everyone else, too, about getting this 1 year in writing or a lawyer. As you said yesterday on my blog, you've been selfless in taking care of your mother for so many years, which has taught you to be selfish at times -- which is a GOOD thing. Take care of YOURSELF on this one. It's your right.
((((Eve)))) I really don't know what to say - hugs hun! I don't think a lot of us could do what you are - whether she tells you or not I am sure your mother is proud of all that you do and would thank you if she could...
as to the selfish sib - it will haunt her one day - it may not seem like it now - but oh it will
How awful a thing to go through. You would think after you took all the time to take care of your mother instead of your siblings they would let you keep the house as some type of compensation. I agree with Laurie - you should definitely seek the counsel of a lawyer on this one. Surely you have some rights here.
I'm so sorry about this tough time...my thoughts are with you and your mom.
You are stronger then you think. I'm sure you will have some adjustments to make but I have faith in you.
Get your mother on a list for a nursing home right away. I don't know how it works for you there but here if you get a call that says you have come up on the waiting list but you are not ready they just go to the next person but emergency cases can get in right away.
Also get something from your siblings in writing. some thing that are said are sometimes conveniently forgotten.
I feel for you. I can't imagine watching a loved one go through this disease. My dh handled a case where the woman went through this illness and reading the records were heartbreaking. I hope your family appreciates how hard this is on you and how luck they are you have put your life on hold to take care of your mom.
I echo the words of others, go see a lawyer. Make sure they specialize in wills, trusts and probate. Believe me, families get ugly when it comes to money.
I agree with what everyone else has already posted. My heart goes out to you and your mom. I'll keep you in my prayers. *hugs*
Hang in there. You are strong. Get the legal advice. There are services in EVERY state that give free legal advice. Go get it now. They could also help with drawing up a contract for you to stay in the house at least another year. Your siblings don't need the money 'that' bad.
So sorry, Eve. You're in our thoughts.
...and Bailey too. Now I understand! Welcome, Bailey. :)
Ah, Eve, I'm so sorry to hear this. I pray you and your family will be able to get through this time.
Y'all are terrific. Bebo and I have already thought of most of this. I need to get up to our safety deposit box to check mom's will - I think I'm second on the executor, but I'm not sure. David isn't a problem. If there is one thing I'm sure about in my life, it's that my brother loves me. It's Cathie that worries me, and with Dave's declining health there is a possibility that he could go before mom. Of course, with Cathie's declining health, there's that same possibility. That's the reason Cathie doesn't help me now - she's in a nursing home and struggling to keep her house. Dave is in Missouri - but even if he were here, his wife Janet has her hands full with him and their autistic son Dylan. This may sound terrible, but that would be kind of a blessing - Cathie has no heirs and David has enough life insurance to set Janet up without any money from this estate. That would only leave Bebo as Howard's heir to deal with.
Mother actually slept through the night last night. And she's still sleeping. I got her up for breakfast and lunch and will get her up for supper. What have I been doing? Working on my website. Got a lot done.
Eve, I'm so sorry. *hugs*
(((Eve))) I'm so sorry. You must be feeling overwhelmed. The advice to get things in writing is good. It will give you some security and time. Know that you're in my thoughts and prayers too!
(((Hugs))) to you and your mom, Eve. My heart aches for you both.
Do take care of yourself, as well. Do you get respite every once in awhile so that you're not constantly "on watch"?
I echo everyone's sentiments...do look out for your best interests before it's too late. Unfortunately, greed does horrible things to people. Protect yourself!
(((Eve & Bailey)))
Finally! I can comment again *g*, you may not want me too though. I'm glad to hear that you are secure in your brother's love. But, still, make sure that everything is taken care of now. Don't put off checking the box, ok? As for your website. Looks good!! But, you are a dreadful tease for placing excerpts of your WIP's up there!!! I want to read them all, now! *g*
I don't get a lot of respite. Bebo is all of the help that I get and she watches mom on Thursday nights and Saturdays so that I can work. But, my ex-niece-in-law will watch mom on July 2 so that I can get out that day. Yay!!!! My own niece and nephews are on my list of people I'd like to slap silly. They haven't seen nor talked to their grandmother since Christmas - and they don't live far.
Brandy - *gg*
Martin's (my husband's) mother had Alzheimers. She was in the assisted living home here and it worked really well for her. She did much better than at home and never wanted to go back in her house after she left. She would sit in the car on visits refusing to go back in. Martin went to see her every day he was home. She seemed to enjoy the scheduled meals and church on Sunday mornings. She remembered hymns. And she could play gin rummy...how odd the disease works. Someone could walk in to see her, leave the room, come back and she'd say..."Oh look who is here." You could do it over and over. But it was pancreatic cancer that actually took her life. When she was diagnosed Martin and his dad didn't even try the treatments to extend her life. Her quality of life wasn't anything to extend.
It is the just such a sad disease. I personally think it is one of the worst things that could happen to you, forgetting your life. I feel so much for you. I know it must be so hard having to be the caregiver.
Why does this always happen? Like vultures circling a kill and you the only one who's put your life on hold and every ounce of energy into making your mother as loved and comfortable as possible.
Siblings can suck. Actually lots of people suck whenever money signs appear.
(((Eve))) I hope you get a mgic cure. And I hope things work out. I daren't hope you could talk to your brother and sister into holding off? Or afford a mortgage?
Hey, Bailey! You don't have to worry about me as Howard's heir. And trust me you don't have to worry about his kids either, I'll slap 'em upside the head if necessary. They are all on my list! (and I don't mean christmas list either!)
Dallas Legal Aid is the 1st place to call, they will hook you up w/ a lawyer specializing in whatever issue you have. The referral service is free & 15yrs ago they only charged me $15 for the office visit. I'm sure that fee should not have changed much over the years.
I would love to see you be able to either stay in the house permanently (or as long as you want) or sell it & use the $$ to live on / relocate / whatever. It will depend on Cathie / David. The rest of that is in God's hands.
I'm so sorry to hear about your mom. Life is hard sometimes and unfair. I hope things work out for you and you get to keep your home.
I tried to post yesterday but no matter how many times I tried to refresh I couldn't get the word verification to come up. Maybe it's my old computer causing the problem.
Somehow I missed your blog but I was thinking of you and praying for you and your mom. My heart is bleeding for you. How well I recall all those stages with my mother and I can see that you've educated yourself well. I don't remember seeing a list of stages at any time when I took the Alzheimer's course.
I pray for God to keep up your strength. You are a strong person despite your own heath problems. I really admire you.
Like you, I was suddenly turfed out of my home without a job and just my disability pension although we were to split the money from the sale of the house. I know someone else who had to leave the house he had been living in for the last 40 years after his father died in May. I know how hard it was on him. This inheritance was split only two ways. Since the configuration of our families are the same, we had to split 4 ways. At first my brothers had decided to keep my part of the money in trust to use for my mother's nursing home. They also got her a one-bedroom apartment and that confused her more than it helped. And cost $500 more a month than a bed-sitting room. Finally for the last year of the nursing-home stage we had to have that paid by the government.
I hope you have that opportunity once she is in that stage. I'm glad that your brother has helped you at least. I can imagine the uncertainty with which you are living. In many ways I'm still there myself.
Big hugs and prayers for you and your mom. You are in God's hands. Knowing that is the only thing that has helped me through the tough times when nobody else was/is there for me.
What does your sister have that she's in a nursing home, if I may ask?
I definitely agree with Laurie about getting her on a nursing home list. With my mother, things changed almost from one week to another that she suddenly needed a nursing home.
Hugs and more hugs and prayers.
I’m so very sorry. You’re a strong, brave woman Eve. A good woman with a good heart. You will survive this and, eventually, you’ll thrive and come out on top. You’ve already taken a truly positive step for yourself in creating your new Bailey writer identity. That’s a definite move in the right direction because you must not make the mistake of putting your life on hold. If ever there was a reason to turn to writing, this is it. May God bless you and give you strength, my friend.
Sending hugs, Bailey! I agree with what others have said, find out where you stand and secure it. Raine is right too, it's not a dive, it will be a new chapter for you. Scary, yes, but a new beginning. More hugs!
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