i am new to this board. my mother was diagnosed with dementia last jan. she has gone from bad to worse each and every day. i feel like i lost my mother and i am finding it hard to cope. i worry about my father so much. everything with him is ok, just a little hard of hearing. mom is in a nursing home now due to a fall she took at home. when medicare is done paying, i dont know if she should have 24 hour care at home or put her in nice senior nusing home with dementia patients. i need so much help.
Welcome to the board.....if you're looking for help, you couldnt have come to a better place. I dont believe you'll find better advice or people anywhere.
So sorry to hear you are going through this with your mother....it's a devastating illness to deal with. I come here in support of my grandmother who suffers from dementia. There are people here who can give you a world of advice and compassion....welcome, you are among friends!
Love, Caroline xo
Sorry you have this problem, but you have come to a place where many others have the same -- or had it until recently. I am a 'graduate' of dementia care, since my Mom passed away in December 07.
Mom began to show symptoms of dementia 8 years before she died. I moved in with her to keep an eye on things, but she was still up and around and going to a senior center every day. Then she began to get lost. We lived in a big city and she could no longer go out alone, since she could not find her way back. We hired a home health aide to watch her for most of the hours I was at work. That didn't work out well, Mom resented the woman being in her home, and felt she was perfectly capable of being alone. But she wasn't. Pots were burnt, a toaster oven was set on fire, she almost fell climbing up on chairs to get things off a high shelf, she was forgetting how to keep herself clean, hiding things, going to the bank and taking out money which she lost or gave away.
After falling and breaking a hip she went to the hospital, and from there to a rehab/nursing home. There she was unable to recover the ability to walk. They transferred her to a long term care unit, where she stayed until she passed away.
To the surprise of her whole family (3 children, 7 grandchildren, 6 great grands) she felt happier there than in her home with an aide. There were other people she got to know, friendly nurses and aides, food prepared for her, her bathing and shampooing taken over by competent helpers, clothing washed etc.
Looking back, I do wish we had placed her in the nursing home a year or two earlier, since nobody was happy during that year when she was so confused and yet trying to be independent.
The advantages of a nursing home are that the staff is well rested, there only for an 8 hour day and not overworked and short on sleep (I was awakened by her repeatedly at night, often she wanted to go out.)
My Mom had no property of her own and little money, but we applied for Medicaid and the state accepted her, so after a couple of months of paying a high fee, the NH continued her excellent care for whatever they got from Medicaid. Mom's Social Security went to them also, except a small personal allowance for odds and ends.
I think it would be really hard to expect your father to take care of your mother as she progesses to worse and worse stages, even with your help. But there may be a solution if you can get both of them into an assisted living place, where they have their own apartment or rooms, and yet are helped by trained people in the things she cannot do for herself any more. Medications are monitored, wash done, help with bathing if needed, meals in a community dining room if needed, etc.
It would be a good idea for you to investigate facilities in your area and see what is available.
Good luck, it is a long hard path.
Maybe a drug will soon be on the market which can reverse this disease. This gives hope to those just starting it.
I am truly sorry that you need to be here Debbie but you have found the right place. We are all dealing with loved ones with is horrible disease. I have two parents with dementia.... Dad with vascular dementia and Mom with alzheimer's. Mom cared for Dad for 5 years and has chronic depression to show for it. After Mom was diagnosed we tried to keep them at home but Mom resented the in home care and resented us being there "all the time". We finally had to place them in assisted living. I do see the tole that caring for Dad took on my Mom. My only regret is that we didn't do something sooner.
Your Mom is only going to get worse. It will take a tremendous told on your Dad and yourself to try to keep her at home, even with in home help. I am with Martha. There is no way you can give you Mom the same care at home that she will receive in a facility. Beyond the constant care by refreshed staff she will also get socialization, activities, and stimulation designed for her abilities.
I do understand the way you feel. I watched my Dad slip away. Lately he has not recognized me on several occassions. He is usually good humored but his level of confusion advances daily. His has been a long slow slide of about 8 years now. Mom's decline, on the other hand, has been more rapid. In just a matter of three years my rock, my best friend, my Mother has become a person that I truly don't know. Her selflessness has turned to a child like self centeredness. Her optimism has turned to a negative depession. My brilliant mother can't figure out how to change the TV channel. SO yes, I do understand. All we can do is the best we can for them while they are with us and remember all they have done for us.
I will keep you, your Dad, and your Mom in my thoughts and prayers....
thank you all for replying. i have tears in my eyes now so i am finding it hard to respond. i was very surprised that all of you agree on a facility rather than home care. as i think about this more, i actually am in agreement with you. it is so hard to find the right facility, though. we have to make a decision by this weekend. the only thing that bothers me with this nursing home is when she has to go to the restroom and they dont come for at least 15 minutes. why does she have to have an accident when its not neccessary. i cry all the time and i just want my mother back only i know its impossible. why does this disease be so rapid. how you cope. is there anything i can do to help her.
Well, first of all, welcome to the boards! You are Debbie #3 - there is DebGabriel who is sage and wise and dealing with her parents in AL, there is me, lil' deb, who is caring for her father at home (stage 6, and starting the progression to a facility), and then you! Welcome.
I can honestly tell you, debbie, that in home care is more difficult than you can imagine. My mom died in 04, and we moved daddy here to Colorado as he was exhibiting signs of dementia. My DH and I decided that when he needed it, I would quit my job and stay home and care for him. So, in Jan of 05, that's just what happened. Let me tell you what that has meant for my family (DH, son aged 12, daughter aged 30, son aged 21 and 2 lovely grandsons):
I finally took a 4 day vacation with the family this last summer. First one in 5 years. Cost me $500 for "companion care" for that 4 days for dad, and I was worried sick the entire time.
I have not slept past 7:30 for 4 years. Dad needs toileting and breakfast.
I cannot go shopping with friends because I can't be away more than 2 hrs.
I go to church, and it's scary. No after church potlucks, either. 2 hrs. No more.
I have no friends any more. No one has the stomach to hear me talk about dad, and that's all I have to talk about.
I have no career. And I had a great one, too. Dad needs me.
I clean two houses every day. His and mine. He lives next door. I am tired of cleaning. But his house must stay super sanitary for germs.
I cannot take little trips with my daughter. We used to fly "home" 3x a year.
My son takes a back seat to what I have to do for dad.
All this is the job I love. I wouldn't trade it for nuthin'. But I am no longer being fair to dad. He needs more care than I can give. And the last 4 years have been a tough job; a job I am glad I did, and am ready to turn over to people that are more qualified. See, dad is cognitively "gone". Actually, dad is gone. I have grieved for 4 years now because daddy is essentially gone, and what is left is just the house he used to live in, so to speak. I want him back, too, just like you want your mom.
But honey, it is not to be. It would have been kinder had daddy just had a massive heart attack. But that was not God's plan. For some reason, some folks have to live with minds that wander while their bodies go on living. It's not fair. It's not right. And when I get to Heaven, it's one of my first questions I am going to ask God. But till then, we have to play the hand we are dealt.
Debbie, you are quite right. A facility is the way to go. Dad is headed there. And if mom is not being tended to (waiting 15 min to go to the toilet is ridiculous), make sure you let that be known. But she will get the care she needs, you can go see her as much as you want, and you won't live MY life trying to make mom healthy and happy. We can't do it alone, Debbie. Much as we want to, we can't.
Again, Debbie, welcome. I am throwing you my very best lavender towel *lil deb tosses debbie lavender towel*. Use it to cry into, to wring in frustration, to yell into, and to twist and snap at people that irritate you. We have the other end and will help you along your journey. When you can't take another step, we'll pull you. Post often. It helps.
The Angels on this board will help guide you through this difficult journey
you are now on. My Mom was diag with dementia 3 years ago. She was the brightest woman ever...this changed gradually. She could not understand what press 1 for English meant when she was using the telephone. Now we are at the stage where she does not know what a toothbrush is. So, my dear Debbie, please listen to what all of these Angels here have written. I am a new-be to those boards, but, I can tell you that not a day goes by that I do not log on a few times each day and sit and read and cry. It is what it is.
My heart is with you each step of the way. ...If you get sick then who will care for your Mom? Please, listen to the great gals here, they have all been there, done that and they do know what is best for all of us while on this dreadful journey!
My best to you.
Deb...I've found that this isn't always so! My Mom is starting the 10th year in an Alzheimer's Facility!
I've watched some clients arrive and only be there for a few months...some a couple years...........and then, there's Mom. This journey has been 1/6 of my life...1/3 of my children's lives. There are too many families in this same situation....far too many.
It hurts. It often hurts more than you think you can bear...but you WILL get thru it...you have no other choice. There is no going back to that person you love and remember so well...and serious, difficult decisions have to be made. It sounds like you are already understanding the difficulties that lie ahead.
From someone who's been on this journey a looooong time...and had 3 loved ones diagnosed at the same time (also MIL & FIL)...my advice is to keep those memories of "how it used to be" near to your heart...never forget that that dwindling little person is STILL your Mother...but not able to be in control of ANYTHING that is happening to her as this disease progresses.
Do not ever talk in front of her thinking she cannot hear and understand what you say...I remember being told "They do not loose their intelligence"...and not understanding what that meant until ME realizing Mom always (and still) understands what I say....she just is not able to respond in a legible sentence. (Actually, there is rarely response for a few years now)
Understand that your Mom DOES realize there is something happening to her that she cannot control...and SHE'S SCARED TOO. In the beginning, it's convenient for us to ignore little signs, and sometimes they are much farther along than we realize. It sounds like you are very much aware of her challenges...good, and bless you.
One of the hardest things I had to deal with is that the responsibility is sure not equal with other family members...at least most of the time. Each person will view responsibilities differently...COMMUNICATION is so important! My family has been torn apart by this disease...I'm her only visitor now.
I have to add that the littler Mother I visit each week still can bring me joy. There are tiny miracles along the way that I grasp onto...tiny glimpses of that wonderful smile...throwing her head back and singing just one off-key note that makes me realize she's trying to sing along...that gnarly little hand reaching out to caress my face.................it's been a horrendous journey that I wouldn't wish on anyone, but it must be I still have much to learn.
Keep posting here...ask lots of questions. Often many are helped by just reading along...so we're each helping each other. Sending love.....Pam
Deb, I lost my mother one year ago last week to this horrid disease. I hate it with a hatred that no living soul should have. And like big DEb, my father had vascular dementia, and also AAA, which is what took him 5 weeks before my mother..so I lost both of my parents within 5 weeks. I had to put my mom in a locked unit-and daddy joined her for a month before he passed.
A good NH is the best place for your Mom and for you. Listen to little deb. It has taken her a long time and alot of our beating her up to realise that it isn't fair to her dad or to her family or to herself to keep her daddy at home. The person that you would be caring for is no longer in that body-they have bene replaced by the imposter that is occupying your parents body. Your mother lives in your heart and soul and mind. And the burden that it places on you and your family and your loved one is so great that in many cases some families never recover from it. So if that is the road you feel you must take, you need to consider if you are willing to risk your entire family in the process.
We welcome you here with open arms and well padded shoulders for you to weep on. Heaven knows we each have done it enough to each other. Please ask any question because the only dumb one is the one you don't ask.
thank you to all of you for your intelligent and kind words. this is the 1st time i was able to get on the computer. i have been running to see my mother and having my dad for dinner and taking him out to dinner. i dont have time for my husband and i know that is wrong. i do think tonite we will go to dinner and a movie. my son has been wonderful with understanding. i have so many questions. how do you know what level of dementia, how do you pay for the nursing home and how often should i visit? the advice you all have given is great. i now know mom cant go home. i sort of thought my mom knows what we are talking about and thank you so much for telling me that. i will pass it on to the rest of my family members. i am emotionally drained and i feel as if iam in the twilight zone. thank you for responding. my thoughts are with you all. debbieg
We paid for 3 months of Mom's NH and then all her savings were gone. An Elderlawyer helped my brother (who had POA) to apply to the state of NY for Medicaid. It took a few months. During that time the NH agreed to keep Mom for her SS check alone minus a small allowance. We also paid the lawyers fee, and prepaid her funeral on his advice. Then her money was spent down enough, and Medicaid accepted her. They paid for the rest of her stay there, 20 months longer. Once she was on Medicaid, her drugs were also covered, and doctor's visits. Later when she was put on Hospice, something in the drug insurance had to be changed. My brother took care of it all, he had to dig up records of Mom's financial matters over the previous 3 to 5 years. Luckily she had never thrown such things away, in fact her apartment was cluttered with paper files from 1977 on (when my father died.)
It was a hassle, but it succeeded. My brother told us that if the state had rejected her, the only other alternative was to bring her to live with one of us, her 3 children. I was the only one without stairs, so she would have come here for 2 years. I am glad the NH kept her on. I don't think I could have dealt with it. By then she was wheelchair bound and fully incontinent, irrational, and confused. The NH staff loved her and treated her very well.
Mom and Dad are private pay at this point and living in an assisted living facility. They do have a locked ALZ unit and can stay in the facility with hospice. So unless there are medical issues that warrent a nursing home they will stay right where they are. I doubt they will be on Medicaid but I do understand there is a 3 to 5 year look back period so I am keeping precise records of all expenditures if that time should come. Mom was an amazing record keeper. I have amazing records back as far as l950.
I would highly recommend a good estate/elder lawyer. We just had our initial visit and his advice was valuable and comforting. It's nice to know you have someone with all the legal mumbo jumbo down pat in your corner
There are some guidelines on the front page of the ALZ section of this board that will give you characteristics of each level. Of course each patient is different but it will give you an idea. Also levels do not just happen. It is a gradual decline so she might be a 4/5 or a 5/6. The decline is not constant. When Mom's cognitive testing was done by a memory research center they gave us a level of moderate to sever dementia consistent with ALZ. That was enough to let us know she was advance in her ALZ but not what level. I have noticed that she does better with some things and not as well with others. Her auditory understand is severly lacking but she has not lost any speech. She can tell you what she wants but doesn't understand or remember what you say to her. If you can show her she retains the visual much better. You will eventually become aware of what she can and can not do and see the progression of the decline.
How often you visit is up to you and your Mom. You will find a routine that works. We average somebody there every other day and sometimes every day. Mom seems to need the connection and Dad loves having his family around. We do try to keep the visits shorter rather than longer. They do thrive on routine so if we are there at meal time we just eat with them. We make appointments in the early afternoon because Dad likes to sleep in late and eat lunch as soon as he is up and ready. We usually visit for a hour or so and then let them continue with their routine. It tends to upset their evening to have company after supper. You will find the right routine with your Mom and how she responds.
I do hope you go out for dinner and a movie with hubby tonight. It will be a nice break for both of you and give you time to reconnect. It will also help you re-energize. Enjoy your evening
i did go out to dinner and a movie. it felt good. my mother has a digestion problem so her food has to be blended. the private facilities wont blend the food. if my mom stays at this particular nursing home she is in now, my father will have to pay a fortune every month and they wont take public aid or offer any deal when his money runs out. i dont know what people do. also, we would like to bring her to my house for thanksgiving. i am scared about that. we have to make sure she keeps her balance when she walks and i dont know if she would be frightened to be with all the extended family. what a horrible way for her to live. how do you get rid of all the stress that is in our minds and body.
Not sure about where you are but here we have "patient rights" and if they need blended foods that is what they get. We do have to have "doctor's orders" but that's a good thing. Doctor's orders are a prescription and they treat it just like not giving them their heart meds. Don't give up looking.... something is out there for you.
As for Thanksgiving. One thing I figured out after a year of chaos is the fact that it is us, the daughter, that want Mom and Dad at the celebrations. Does it confuse them.... YES!! Every gathering we have had in the last year has ended with Mom in tears having a total melt down and Dad upset because Mom is upset. The noise, the confusion, all the people, the break in routine, the unfamiliary surroundings, all combine to be overwhelming. So this year we are having family Christmas in the guest dinning room at the facility where they are staying.... during their regular lunch time. We are even bringing the turkey. They will be in a place they know and if the situation gets too chaotic for them they can just walk back to their room. After we eat we will take Mom and Dad go back to their room to recover. Then we can wander in and out in small groups to enjoy them without totally destroying their routine. This will give us the best of BOTh words... theirs and ours
As for the stress..... I just got back from a 10 mile bike ride with my favorite music fed from my I-pod into my ears. I accomplished two things... exericise which is perfect for relieving stress and I did something JUST FOR ME!!! Those are my two recommendations. The trick is to shut down your worry center when you do it. That's what I use the music for.
Now I have to balance Mom's check book, pay some bills, and check to see how horrible the stock market was to her last month !!!ACK!!!. That will wait until after I call Mom and make her laugh
You can ask your physician to recommend a nursing home which is full service (I never heard of any care facility that won't use the blender on foods, as a huge number of patients need pureed food!) and which WILL take Medicaid when her money runs out. As hard as it may be to change facilities, it is important that she get the services she needs.
I would veto the big Thanksgiving dinner. Take her a platter of (pureed) turkey after the feast, with best wishes from everyone. Leaving the NH for a big family gathering is frightening, too much stress, too many voices, too many faces, feeling strange and out of place, not knowing where she is or who all these strangers are. I would spare her that stress.