The last stages of vascular dementia?
Our mother appears to be in the last stages of vascular dementia. By that I mean that she is completely bed ridden, requires twenty-four hour care in a long term health care facility. She is sustained by a feeding tube which goes directly into her stomach. She cannot speak or focus her eyesight, but can open and close her eyes. Her heart beat remains within the reasonable range of beats per min. Her blood pressure is also in range. We are wondering how long she can last in this condition? She recently was hospitalized with an upper respiratory infection and had great difficulty with chest congestion. Her swallow reflex is gone and her ability to cough is almost non-existent. And yet she remains alive?
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This in between phase between life and the end of life in this world is heart wrenching for those who love and care. Your mother is hanging on and as Nancy said, only her physician can give you a sense of how much longer.
We have an online support group that you may find helpful at this time. It is called Caregiving Forum with Ann (our social worker). You can get to it on your own by selecting Forums at the top of this page, and then selecting Ann's Forum.
I know how hard it is to watch someone slowly die. I've been there and it is awful. If family is around, take care and support one another, be with your mother. If you are of a religious orientation, use your rituals and practices to support you through this.
Reach out if you need support, we are here for you,
Dina
to read of what has been going on with your mother.
I hope that by now, you and your siblings/family have spoken with the doctor and gotten some semblance of comfort.
Please know that your mother has a loving family and my hope for all of you is a sense of peace.
suzer
4/11/11 Hi Anthony
It is hard to let go of our loved ones. Some people want to hang on to their loved one because they need that person around for their own needs. Some people have a difficult time making what is best for the loved one a priority over their own personal needs.
Maybe others in your family just cannot imagine their world without your Mother. They either have not had a chance to say their last goodbyes or they simply don't want that time to come.
The following is a brochure from the American Bar Association on making medical decisions for someone else. On page 10 it has a portion on options when disagreements occur among siblings and/or other family members.
http://apps.americanbar.org/aging/pdfs/genlproxyguide2009.pdf
Did your Mother ever talk with her doctor and/or friends about letting you make certain medical decisions for her? If she did, you may want to check with an attorney if there is some way you will be able to make certain medical decisions for her.
Does your Mother qualify for hospice care? If she does, find a hospice in your area and talk with them. If she qualifies and they will enroll her, they may be able to talk with your siblings and help them with the "letting go process".
My Mom signed all the necessary paperwork years ago. So, I am able to make the necessary decisions for my Mom. Please let us know how things are going. Nancy
Should your mom require another hospitalization and that is not so far-fetched, I am hopeful your siblings are informed by the dr, of what lies ahead for your mom.
The quality of life, or lack of it thereof, should play a very important part in what is best for our loved ones.
Take care of yourself and I am wishing the best for ALL of you.
As Nancy asked, please keep us posted on how all is going.
suzer
My sister and myself are in almost the same situation, our mother is 100% unresponsive, she cannot even open her eyes and cannot move at all. She is in nursing care and is just bones attached to skin, she does not want food and the nursing staff are forcing food and fluids into her. We stood by helplessly yesterday watching a nurse force feed our mother who cannot move or open her eyes, we have voiced concerns that the staff will eventually choke her, but they insist that she wants food, although it is evident that she doesn't. After watching her suffer this ordeal, the senior nurse then administered crushed pain medication to her, without any fluids to help wash it down. Our mother is 85 and has not suffered from any health problems, we just want the angels to take her, we feel as if we are living through the same torture as our mother has endured.
The theme from the movie Titanic is reflective of this situation, "my heart will go on", until her heart has had enough and my mother loses her will to stay alive, she will also go on and on. We can only hope that this will happen sooner rather than later.
6/15/2011 Welcome Krackle
So sorry to hear about your Mother.
Have you talked with your Mother's doctor about the feeding situation at the nursing home? Does he agree with what the staff is doing?
My Mom is entering the final stages of Alzheimer's. There are some days where she refuses to eat meals. The staff does not force feed her, but they do keep liquid Ensure and try to get Mom to drink some of that.
The following is something I found in the "TOOLS" section on this website. You may want to check into an Ombudsman. The is also a section concerning Elder law attorneys.
http://www.alzheimersweekly.com/content/recommended-listings
Have you checked into a hospice service for your Mother? We started my Mom on hospice about 2 months ago. They are really great at checking in on Mom, plus someone comes three times a week and helps her shower. Also, they monitor Mom's eating, weight, medications, etc. The hospice team includes nurses, doctors, social workers, etc.
Have you talked with someone who is higher up in "the food chain" at the nursing home administration to discuss this forced feeding? I am concerned about your Mother's safety and health.
I hope you and your sister the best. Nancy
My heart goes out to you and your family . My grandmother is also at the end stages of vascular dementia and has forgotten how to swallow so I know how you feel . She is under nursing home care and hospice care. Check into hospice caregivers for your mom- they have been a blessing for us and are like family. They are also another set of eyes when you are not there. I would also have a serious talk with the way your mom is being treated with the higher up people at her facility. She should not be treated in that manner . It is scary that a senior nurse did that to your mom . Sending your family love and support .
I just came from a care conference about my mother, and was told she is in the final stages. She's down to 100 pounds, and I can actually see the temporal lobes and her cheek bones. Her face is sagging, and she's lost all muscle control. The fortunate think is that she was able to set up DNR and DNH guidelines, and my mother also has Hospice. I urge anyone to contact them as soon as possible. Their focus is on providing dignity in the last stages of one's life, and as Flame314 said, they are extremely supportive.
I recently put an animal down, and thought how much more humane it was than seeing my mother like this.
8/12/11 Welcome Claude
Glad that you have found these forums and this website. Sorry to hear about the circumstances that bring you here.
I wish you the best with helping your Mother in her final steps in her Life's journey.
Yes, I agree with you about Hospice service. They have been heaven sent for my husband and I in the past when his father was dying with Vascular dementia. Now they have come on board to help us with my Mom who is entering the final stages. Just this week I had to make some decisions on withdrawing certain medications plus the Ensure.
Hospice is great. Unfortunately care givers don't always make use of the help and comfort they have to offer.
May you, your Mother, and family have the caring comfort and help you will need for this last part of her journey.
Nancy
Claude,
Hospice service is a gift not only for the person nearing the end of their journey in this life, but for the family as well. They provide support and dignity for the dying, and they are there to support you too. Avail yourself of what they have to offer. It is not easy watching someone die even if you think it is best. I've been there.
May you and yours find the support and comfort you need at this difficult time,
Dina
Have you checked out hospice care? Many people say it is a blessing for all in the final stages of care.
Here's a respectful introduction to the topic by CBS Health Correspondent Dr. Jon Lapook. It includes a video and transcript.
Advanced Dementia & Hospice Care
Hi,
I know its a year on from your comments but if you are still reading, i was shocked to hear that you knew your mother understood what you were saying and would like to know how she let you know that she was trapped inside of herself. My mother is in the last stages of vascular dementia but i have thought, at least she is not feeling any pain or distress. Please can someone help me know whether she knows or whether she is pleasantly unaware of things ?
My Mother a few years ago went from sundowners to dementia and then dementia
Alzheimer's. She eventually forgot how to chew or swallow. Her
Dr. stopped all food hydration and medicine. hydration and food keeps the body going and allows the person to feel pain. By stopping hydration and food it cause her body to go into septic shock where there is no pain. The Dr. also ordered a pain patch so she would feel nothing until the shock set in. I was shocked that it took ten of the longest days of my life before she passed away. I missed her and didn't want to loose her; but I also knew that that she did not want to live in the state she was in. I cried, but it was for the woman I knew and treasured, not the woman she had become. It comforts me to know she is free and at peace. She remains alive in my heart. I hated to see her go, but I knew I had to let go. Now I am facing vascular dementia with my father in law and going through this twice is more than I can handle some days. It's hard never knowing what to expect or where their mind frame is that day. I find myself answering the same questions over and over again. Watching this man have a heart attack and expecting a simple little fix turn into a whirl wind of problems. He changed over night. It's almost like he went to bed and woke up a different person. It looks like him, but the person inside that body isn't the man I knew. I never dream I would be going through this a second time. I Pray for peace and guidance, and a quick end. I wish this terrible disease on no one. Lift truly isn't fair.
with my father in law He lets out some little comments that let me know there is moments he realizes that something is wrong. Sometimes a look on there face or and expression you are all to familiar with lets you know what they are thinking without saying a word. When you spend a lifetime with your loved one; you do not always need words to understand. With my mom I walked into the dining room
and she looked towards me with a look that I knew all to well. No words were needed to understand what she meant. Listen with your heart and you will understand.
hi i notice you posted a few days ago and just wanted to let u know i am in same place now my mum as vascular dementia as been suffering for 3 years is in nursing care now and as rapidly gone down ill last 2 wks av bin spent sleeping in bed all time and doc says she is near the end such a cruel illness .really cant stand to see her like this but cant stand to let her go.
mom was diagnosed 2years ago with vascular dementia,though we knew something was wrong way before.she seems to have deteriated so fast lately,now when her grandchildren come she doesnt recognise them,she sometimes doesnt recognise me and im with her 24/7 near enough, or my brother.she can hold a conversation face to face or on the phone but within minutes shes forgot whats been said.the questions are repetative like what day is itwhat time is it(shes said she cant tell the time no more) lately shes crying a lot saying she cant go on like this even tho im trying my hardest to make her comfortable and cheer her up and im shattered somedays.its killing me seeing mom like this to how she used to be but is there anybody who has any idea what stage of this terrible thing from what ive said shes in,and what can i expect to come up against in the future.id be grateful cus though i have family they pop in for an houre a week and thats it,i have mentioned carers to mom but shes not having that,tho i know eventually she may have to but wont know.any advice would be appreciated
andrew
He was diagnosed only two months ago, but ended up in hospital last year delirious and crazy. They said he had a temperature from an infection but he never really came right and in January they diagnosed vascular dementia. My step mum struggles. He has started making a weapon out of a steel bar and says he needs it to protect her. She found him in the kitchen with the fireside poker the other night, he thinks someone is coming to kill him.
He was sometimes there and knew stuff but now he cant name us. he cant hold a conversation and he might be dangerous. My step mum will have to put him in a home for her safety soon. A couple of months back when he found out his diagnosis he threatened to kill himself but not he is on anti anxiety medication and ITS NOT WORKING! He sees me and he has fear in his eyes and I understand but what can we do? We could talk on the phone as well in the past but I dont think so any more...I wish you all the best but it just is a horrible ending to a great life.
Jane
My mom was diagnosed with VD in Apr 2009. In Feb 2010 we put her in a nursing home b/c we were working and she could no longer make meals, she would let the dogs out on the street. I think this was a mistake b/c she seem to go down hill pretty fast. It is now 3 years since her diagnosis. She can't dress herself, and she is in a diaper but can go to the bathroom on her own but wakes up wet most of the time. She can say words, but no coherent sentences and literally calls people the worst of the swear words, b$$$$tch, the F$$$$$k word is her favorite. she will not let anyone change her or bathe her and often sits in a wet diaper all day. Physically she is strong. She went into the home at 115lbs and is now 150lbs b/c of all the antidepressants etc. They are now going to start her on trazadone one to try and make her compliant. My sister and I bathe her twice a week with her calling us some very vicious names. After the bath she likes us again, boy it is hard. She can not hold a conversation at all she says they are going to beat her or they are burning her babies. The doctors say she is late stage, but she can still feed herself and walks etc. she just can't communicate or ask for anything. Does anyone know or have experience and can tell me what comes next? We r in Canada so when she can't feed herself they will feed her. Why is she so mean?
Also. My mother is only 68 years old. She was a heavy smoker.
Makm, Jane, and Andrew, Welcome.
There are no words to describe how difficult it is to go through what you describe. What you need to remember is that all the things your loved ones say and do are the disease acting through them.
Makm, you and your sister's dedication to going and bathing your mom despite how difficult it is, show such strength of character and love.
Jane, you are right to be concerned about safety. Sometimes, placing someone in a home, difficult as that might be, is best for all concerned.
Andrew, balancing the needs of the caregiver and the sufferer can be delicate. Although your mom is against the idea of a carer, you must also care for yourself and give yourself some respite. If the family will not pitch in on a regular basis, you will need to get some help.
If you are interested in learning more about vascular dementia and to gain a clear understanding of vascular dementia's diagnosis, peculiarities and management, click here to watch the video "Advanced Class on Vascular Dementia".
?You also might be interested in our Caregiving Forum with Ann, a group where folks reach out and support each other in the care of their loved ones.
?Hope this helps,
?Dina
Thank you for your comment. My two sisters and I are in the home almost every day. Today as I was getting out of the shower the home called to say they were trying to get om changed and couldn't (wet diaper) could I come in. I have been in to the home 5 days straight now and bathed mom last night. My older sister has decided that she wants her life back and has decided she will visit occassionally and no more bathing. Yes, I did go in and changed my mother today when she wouldn't go in. have two kids, my sister shave none. I work as well and I am tired too but I feel very strongly that my mother be treated like the person she was and still is inside. It causes conflict between my older sister andi and some days it takes me everything not to smack her if you understand how emotional this situation is. I am the POA for my mother, my sister makes comments like how long do you think she will live b/c I can't do this for 5 more years. My younger sister and I are on the same page, respect for our mother is our focus, and yes most nights I wake up thinking about how this disease has effected our lives. I still bring my mom out every weekend but lately she just won't come out she says "no". I don't think she understands where out is, but then she goes out and seems to be alive for at least an hour. My mom really has no communication just some words that she says. What stage doyouthink she is and even though her diagnosis was in 2009. I seen the earliest of signs in 2006 when she started misplacing things or would get anxious about taking the bus and made excuses to not take the bus, so I would take time off work and drive her, I also handled all her rent and bank stuff, in 2008 when she turned 65 and I tried to explain all her pension stuff she hadno clue what I was talking about and I completely took over and made a doctors appt, the doctor didn't think anything was wrong with her, then two months later se had a TIA. No residual effects until 6 months later she could not count money and got very sad. I moved her in with me in June 2009 and into a LTC in Feb 2010. Now I wish I had taken more time off work b/c I feel it might have kept her more grounded. She could talk and still dress herself then. Now she refuses to let anyone touch her and has diaper rash like crazy, it hurts me to see her that way...any advice
Hi Andrew,
Reading your post reminded me of my mother in law. Her doctor said she was in stage 2 rapidly heading into stage 3. My grandmother on the other hand is at stage 7 and of the 7a-7f symptoms she has half of them. Its horrible to see anyone you love like this, heck anyone like this. I pray for my grandmother that God takes her in her sleep soon. She was in pain today. We went to visit her and she really was in visible pain. But she was also anxious about getting her daily buzz of dunkin donuts coffee...Funny! She eats fine (pureed food) but still needs that caffeine fix. She's in a chair most of the day then in bed the rest of the day because she broke her hip last April. She seems almost to doze of her seconds then wakes. She forgets to swallow and her arm is also bent to her chest. While the other hand angrily taps on the wheelchair arms. Or clutches the wheelchair. She's got plenty of strength as she grasped my mothers hand and squeezed til my mom couldn't take it anymore. But I think her time is nearing. It's getting worse faster and faster. And now she is hardly understandable when she tries to talk. But before that happened she said that "her husband was calling her". My grandfather died of a heart attack 15 yrs ago. I hope he's calling her and he gets through to her!!
Take a look at the link below to see where your mom is at.
My heart goes out to you Helena, I come from a very dysfunctional family, we haven't been close since we left our childhood home. We now have to redefine our family as mom is entering the mid/last stages of AD. She also has Congestive Heart Failure. Family meetings, even with a proctor, are of little use. We failed our mom. You haven't. Now we have to try to gain a foothold and be a family. Best wishes, Sue
My mom has had dementia for three years after suffering a stroke. I put her on Paxil and it helps with the depression. Also, feeding her avocado and folic acid and beet juice to help her memory. I'm going to add coconut oil next after reading all the articles about it.
Hi Gail,
Your mom is fortunate to have a daughter so dedicated to helping her. Glad you saw our articles on coconut oil. Make sure to check out the threads dealing with how much to give and see the pros and cons detailed by our readers in the testimonials on this Forum.
Since you seem to be interested in supplements and in making dietary changes, you may be interested in our Prevention Library which has sections on "Diet" and "Supplements and Medication".
Keep us posted on how things progress. Let us know what helps. Your feedback is valuable to others,
Dina
My husband Patrick was diagnosed with Lewy Body Dementia and Frontotemporal Dementia 3 years ago, but I've known for 7 years that something was wrong. He's only 65 years old. The problems keep changing. I just about adjust to one thing, and he starts something else. I don't know how advanced he is, but he can't speak so that anyone can understand him, he can barely walk, sit or stand, and he's totally confused about even the simplest concepts. I don't think he understands what people say, because if I tell him to sit on the potty, he'll pick up the box of tissues. He always substitutes an activity for what I ask him to do. For me the hardest part is watching our house get destroyed. There isn't anything that hasn't been stained with food, drink or pee. He wets the bed usually twice a night. Depends won't hold it. I can't sleep with him anymore, because he smells so bad (and I bathe him daily) and he talks loudly in his sleep and jerks. He gets these spasms that fold him in two, and that usually causes him to fall. He falls about twice a week too. Well, that's enough complaining. It's a very hard job, and I just wanted someone to talk to.
5/02/2012 Welcome Karen Kay,
Glad you have found our Forums. If you have not had a chance to check out "Caregiving Forum with Ann", I recommend you visit us there also. The Caregiving Forum is where we caregivers can come and tell our loved one's story as well as how their dementia is affecting our life. We can share things we have learned --- some things that work and some that did not. If you decide to post there, please be sure to start a new thread just for your husband. It is easier to keep track of comments to you from others.
Wish I had some magical answers for you. My best friend's Dad had Lewy Body dementia but I don't know that much about FTD. My Mom is in the final stages of Alzheimer's.
One of the many things I have learned is that once these dementia start progressing, there will be changes happening. The dementia is affecting your husband's brain. As it compromises different parts of the brain, it becomes more difficult for him to do certain things. For example: following requests to do things may get harder because it is more difficult for his brain to go through the normal functions it needs to. These changes can also affect his walking, talking, eating, etc.
Is his doctor aware of all of these things that are happening? When was the last time the doctor did an assessment of the medications your husband is taking? Maybe they need to changed like new dosages or a different medication.
My friend's father had trouble sleeping at night. His doctor gave him some type of medication to help him sleep.
Concerning the Depends --- you may need to check around for a different diaper. Sometimes a thicker one is needed. Wish I could give you an answer there. Maybe his doctor's office could help you with that.
Providing the loving care your husband needs is not an easy task. It is a hard job. And, you need to vent your frustrations somewhere. That is part of why this website and its forums exist. We are all walking some type of dementia road with our loved ones.
Nancy (NancyA)
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3/9/2011 Hi Anthony
Sorry to hear about your Mother. What has her doctor said about your Mother's life expectancy? Since the doctor knows more about her medical history, maybe he/she can give you better answers.
My Mom is 88 and is nearing the end stages of Alzheimer's. But, even when she becomes entirely bedridden, unable to eat or drink, etc., we will not be able to say how much longer Mom will survive.
My father-in-law died from congestive heart failure and Vascular Dementia. Dad was doing good until he stopped eating. We chose not to use feeding tubes. There were days when we knew it would be the end, but Dad would cling to life for a few more days.
Warren and I have decided not to use feeding tubes when my Mom is to the point where she is bedridden and can no longer eat. Sometimes feeding tubes will only prolong a person's life. When Mom reaches those end stages of Alzheimer's, we have decided to let her die peacefully. I love my Mom but the woman in her body is no longer the Mom who loved me and raised me. I know that at some point I must put what is best for Mom ahead of my wanting her to still be around. It is time for me to start letting go of my Mom.
I wish you the best in answering your questions concerning your Mother. Wish I had a simple answer to your questions.