life expectancy for those with dementia
A New Yorker

New York, NY

#122 Jul 19, 2011
Everyone here should know of the Well Spouse Association, a support group. It has a web page.
Slow Boil

Mount Gilead, OH

#123 Jul 21, 2011
No thanks. I am not interested in attending one more meeting where we talk, share, and then money /donations are requested to help fund the Well Spouse Association. It just makes more stress in my life and it would be one more meeting I have to go to.
I pray she pass peacefully every single night. The next morning the answer is no, not today. All she is doing is making money for the nursing home.
Maria

Fishers, IN

#124 Aug 18, 2011
Dementia is a scary sickness. I am looking for answers for my mothers death. She was 77, had dementia and I think she was in the beginnig of stage 6 of 7 stages. She had a pacemaker and was a double amputee. One above the knee and one below. Her first was done almost exactly 5 years ago and the second almost exactly 2 years ago. On July 25, she was home in bed and began to rattle the bars on the hospital bed. Her caretaker woke up and went to her. My mom was sweating and was a little warm and kept chanting, "oh God, oh, God....etc.) She wet her bed and the caretaker chaged the sheets. After a little while, my mom appeared to have fallen asleep. This was about 3 a.m. At 7:30 a.m., the chanting started again and the caretaker tried to give her water with a teaspoon as it seemed she forgot how to use a straw. She tried to say the caretakers name, with some trouble. The name was Maria. Her eyes were open. She again quited down and seemed to have fallen asleep, only to be found dead about 12:30 p.m. She would not have wanted an autopsy, so we did not do one. We are thinking she either had a heart attack or stroke. The caretaker said she did not appear to be in any pain, her face was not "crooked" looking as with stroke patients, but she did have some trouble saying her name. The only other thing she kept saying was oh God, oh God. Any help someone can give me would be appreciated. I was told by a couple people we probably could not have saved her and even if we could, she may have ended up on machines, which we knew she did not want. Thank you in advance for your help. She had a similar incident a few months ago, when we got there, she was fine. So, we thought this was the same situation and maybe just having some sort of "spell" because of her dementia. Her legs were swollen a few weeks earlier, but the nurse that came to see her was not concerned. Mom was in a wheel chair and really did not excercise, plus it was very hot. She also did not like to drink water, not matter how much we pleaded with her. I feel badly I was not there, funny thing, I had a horrible toothace and swollen gum and on my way to dentist when the caretaker called to say she was gone. I quickly started towards the city to mom's house and way before I got there, my tooth was fine. This is so hard for me.
Debbie

Plano, TX

#125 Aug 18, 2011
I just came across this thread when I googled "dementia life expectancy". I know from reading your stories that not only are so many of you suffering along with your loved ones, but that I am not alone, or crazy, or heartless for the way I've been feeling. My mom is in stage 5 or 6 of Vascular Dementia, along with Brain injury induced dementia. I'm not totally sure exactly where she is because she does have those moments of lucidness. All I know is it seems we are going along kind of fine then suddenly it's dramatically worse. She has lost all bladder control and occasional loss of bowel control, she often can't get family members names right, thinking we are someone else, she hallucinates that people are here that are not, doesn't always know what state she is living in, currently thinks it's 2007, and lately has been forgetting to eat (or ask for food, since I've been preparing it for awhile now). She sleeps sometimes 22 hours a day and I'm always afraid to look in on her for fear that I will find her gone. My mom just turned 70. This is a horrible disease for anyone to go through and for anyone to watch someone suffer with. I think I'd prefer to lose someone suddenly and unexpectedly than to watch them suffer like this. My mom had a brain tumor at 42, the operation cut a significant part of her brain, but she recovered well and went on to work 27 more years. Radiation to completely rid her of the remaining tumor followed the surgery. When she turned 60 she got breast cancer, and chemo and more radiation ensued. She was a smoker also. She was starting to get pretty forgetful in her 60's but she had no memory problems with anything that was routine and that she did every day. She had also been having TIA's, but medical tests couldn't find a cause. In July 2010 she had stroke, again recovering as if she had 9 lives, then in Oct 2010 she had a complete 180* personality change (for the better) and it was determined that she had had another stroke at some point. Since then she's had many falls and each CT shows more small strokes. It is so frustrating and heartbreaking to watch your mother, who was at one point so energetic and full of life to go down hill like this and suffer so much.(By the way, up until the first stroke she bowled on a league 2x a week!) Now she asks "how long am I going to be like this?" How does a child (no matter that I'm 47) tell her mother "forever, mom". I too wish that God would take her quickly in her sleep. I just keep wondering if her brain can't remember if the body is hungry, it can't remember to tell her to use the bathroom, it can't remember where she is, when is it going to stop remembering to tell her lungs to breathe or her heart to beat? No one should have to witness this, I feel as though I am being tested with every fiber of my being and I hope that I can come out of this at some point and be a better person because of it, but for now I feel like a horrible one. Who wishes and prays for their mom to die? I do, but not for me, for her. All of you out there feeling this way, you are not alone. And you are not wrong. God does understand and the only thing that helps get me through the day is the knowledge and faith to believe that He won't give me more than I can bear, and he will carry me through this fire. He won't leave me there to burn. But if He ever thinks I should die like this, I will begin praying now that medically assisted suicide is legal because I never want my children to have to watch me suffer like this.
Slow Boil

Mount Gilead, OH

#126 Aug 18, 2011
AMEN SISTER. People do not understand this idea of thinking until they find their own family member on this living hell (for everone) journey. Today was a bad day to the point where I am begging God to take me because I can't deal with this one more day. Hell can be no worse then this because I am living it everyday. It has been 6 1/2 years. When is enough enough because I am there.
I truly thought about crossing the road center line in my car in front of a semi today because that is how bad it is and I can't see the light at the end of the tunnel!!!!!!!!!!
WJ in AZ

Peoria, AZ

#127 Aug 19, 2011
I had to put my 74 yr, old husband into assisted living just a week ago. I can't believe how fast he has declined. He was diagnosed with PD about 5 years ago but had it for much longer, I'm sure. The dementia didn't seem like it was too bad until he had to go on chemo in early Jan. Then it just seemed to bloom. He began to hallucinate badly and developed a lot of paranoia. I have been taking care of him by myself until early this month, when I just reached a point where I physically couldn't get him up anymore so I took him to the hospital. They told me it was time to get some help so I placed him in the care center. He has declined to the point where he is not earing, drinking or talking. I cry when I go to see him and I cry when I stay home. Can this go on for months? I pray not.
Debbie

Plano, TX

#128 Aug 20, 2011
I think you could rent the house out if you only rented it for the cost of the insurance, and taxes. Any maintenance or repairs that would need to be done could also be covered by the renter, therefore no income is actually received. You'ld probably be making someone else's life a bit easier if they were able to find a place with inexpensive rent. Maybe there's a family member or a friend of one that needs a place to live but doesn't have enough money for the full rent it would otherwise get. They could maintain the yard and home and it would sit and waste away. Just a thought.

Slow Boil wrote:
RoseAnne. Thanks for the feedback. My FIL told us all final arrangements were taken care of including the living will. What a shocker we had when he suddenly died. He had taken the living will pamphlet dated it and signed it and put it away. Taken care of. His funeral he said was all taken care of. He bought a plot and a vault for himself. Problem solved.
We learned and my mother in law's final arrange ments are all taken care of including her living will. We have an irrevocable trust fund set up for that. Nursing home or governement can't take it to cover her costs.
As far as her SSI, the nursing home takes every bit of that. The only "allowance" she gets is what we personally put in. We pay for medicare Part D, all of her personal care items including depends. Her house just sits empty. We pay insurance, property taxes, utilities, and upkeep. We can't rent it out because we would have to claim it for income. We can't sell it without getting hit with capital gains tax.
Everytime I think I get ahead or find a loophole the door just closes. There are going to be many more stories like mine coming as the baby boomer generation become seniors.
RoseAnne

Springfield, MA

#129 Aug 21, 2011
I posted while I was caring for my Mom. Mom passed away this past March after her long battle with dementia. Please don't beat yourself up. Be grateful that you weren't there because when my Mom was sent to the hospital, as much as I said I was ready to let her go, I couldn't. Your Mom probably started having seizures. That's how my Mom finally passed. What was difficult for me was that in order to treat the seizures, they had to put her on a respirator. Not quite in line with the DNA I had signed, but watching her go through the seizure was too painful for me. I just wanted her to go peacefully, and to me, seizing was not peaceful. So I had her intibated, twice. Then came the decisions on taking her off, taking extreme measures, etc. As much as I put it in God's hands, it was ME making all the decisions. And when push came to shove, I couldn't let go. God Bless our Moms. They are finally at peace now.
concerned daughter

Caerphilly, UK

#130 Aug 24, 2011
My mother is just 61 and has been diagnosed with dementia.She lives with my husband and I with our two young children and has done for two and a half years.She refuses to accept her diagnosis and believes herself to be in trauma brought about from a difficult childhood, violent marriage to my father (which I witnessed).Although she divorced my father when I was 18 (almost 20 years ago)my mother has lived her life in a state of anxiety routed from my fathers behaviour and mental and physical damage during their marriage.In retrospect my mother became depressed a few years ago and as she had suffered several years of ill health and major surgeries I believed the antidepressants and my support would lighten her mood.When both my grandmother's passed away in a short time period early 2009 my mother gave up on life and couldn't cope with being in her own home.In what I then thought was grief she talked about 'going with her mother' and I was scared for her safety.We invited her to live with us thinking that the safety and comfort of being in our family unit would enable her to rebuild her life and come to terms with her grief.This year (2011) my mother was displaying psychotic episodes of mood and after 6 months, and a variety of tests I was told by a psychologist that my mother has early dementia.We are awaiting an MRI scan but several doctors,psychologists and a cousellor all feel this is what is going on with her.
My mother is distraught, she takes an array of meds to 'stabilise' her, but they just block out her senses and when the meds wear off shes is distraught and tearful, ashamed and dismayed that she will burden my family with her need for care.During good moments she understands the commitement I give to juggle raring my children, try to have a relationship with my husband and to love and give back to a mother I adore without social service support.As she lives with us and she is young we more or less are having to 'get on with things'.On bad days my mother wants me all to herself and doesn't see the needs of the children, if anything they are a hinderance and get in the way of her need of her requiring my attention.
I suffer with my health and have done since a chld and worry what will happen if a time comes when I can no longer care for my mother.How will I cope with the guilt and grief of letting go of someone who I look up to as my champion when in front of my eyes she is changing every day.My heart is torn between knowing she needs me, but also knowing that I am not giving my family the time and care that they need and deserve.
Hardest of all is the knowledge that if my mother was well and could tell me whe would tell me to seek out appropriate care but always be in her life.I'm just not brave enough to make that decision yet..........
Alice

Stewartstown, PA

#131 Aug 24, 2011
We finally placed my 84 year old mother in law in assisted living this past spring. I know not everyone can afford this and some of these places are not very good, but for us this was a Godsend. We are fortunate that my father in law left a generous bank account and a long term care annuity so we were able to place her without even having to sell her house or liquidate her other assets. She was always running to the neighbors before, multiple times a day asking what she was supposed to be doing, saying she was lonely, even with an aide there part time. Now, she is in a place with there are several activities a day, always someone to talk to and we don't have to worry about her getting meals or showering, laundry, none of that. She is right down the street from us and still physically fit even though her mind is pretty frayed, so we can take her bowling every week. There are options and I encourage people not to give up.
Mary

Jersey City, NJ

#132 Sep 5, 2011
I worry everyday for my mom. She has been taking care of my 87 year old grandmother who has dementia. My dad helped her a lot, he passed away a little over a year ago because of a incompetent doctor. He was 68 years old. My grandmother is very difficult, she physically hits my mom and is verbally abusive when she doesnt want to change her clothing, etc. My mom has black and blues because of my grandmother. For the past few weeks, my grandmother refuses to swallow her medications and just keeps them in her mouth. My mom would find them on the floor sometimes. Sometimes she doesnt want to eat, and has to be fed. At times you wonder if she is doing things out of spite. I lived in another state and have two children. I cant help my mom on a daily basis. My mom doesnt want to put her in a nursing home, because she is afraid of her be abused. Im afraid of something happening to my mom because of all the stress.
Ellen

Attleboro, MA

#133 Sep 8, 2011
I have been caring for my mom since she broke her hip a age 88. She is now 92. It will be 4 years since the hip. The dementia starting before the break, but that sped it up. She has CHF. COPD, and some other issues as well. I keep her day to day exactly the same, and that helps us both. It is increasingly difficult, and what I ahve found is there is really no help. What i need to to take a few days off and just "be". It doesn't work like that. I can get ( if I ahd money) folks to come in 3 hours a day or so, but unfortunately i don't ahve the money. I could have left her in Rehab when she was there is past winter, but I brought her home. It is so sad to watch the decline, and the once bright stuning woman be so redused mentally- I am blessed that I have her, but it is so hard. I am scared I won't be able to continue to care for her if she gets much worse- Life stinks at this point
RoseAnne

Lexington, MA

#134 Sep 9, 2011
I too had to make the decision to put my mother into a nursing care facility. We were on a roller coaster, she would get a UTI, get so sick, that she could spend 4 or 5 days in the hospital in ICU, then she would go to "rehab" and snap out of it, and not even know she had been knocking on deaths door for the past week. This roller coaster went on for 5 years as her health declined. When it was finally time, I too hated to have strangers taking care of my mother. But we as daughters have to realize we can't do it all. I know I wasn't trained or prepared to take care of her every day. The facility we placed her in was wonderful. The CNA's are professionals. They have trained to take care of difficult patients such as your grandmother and my mother. They were truly angels. And best of all, most facilities have a social worker and people in the same situation as your dear mother. She's only alone if she chooses to be. There are so many of us who have dealt with this nightmare, and she will find people to talk to, as will your Grandmother. My mother was difficult when only I visited her. The rest of her time there, the staff told me how happy and funny she was. They all loved her, and mourned her passing as we did. Nursing Homes are not as scary as they used to be. Tell your Mom to start visiting a couple to ease her fears and help her make the right decision. God Bless and stay strong.
Mary wrote:
I worry everyday for my mom. She has been taking care of my 87 year old grandmother who has dementia. My dad helped her a lot, he passed away a little over a year ago because of a incompetent doctor. He was 68 years old. My grandmother is very difficult, she physically hits my mom and is verbally abusive when she doesnt want to change her clothing, etc. My mom has black and blues because of my grandmother. For the past few weeks, my grandmother refuses to swallow her medications and just keeps them in her mouth. My mom would find them on the floor sometimes. Sometimes she doesnt want to eat, and has to be fed. At times you wonder if she is doing things out of spite. I lived in another state and have two children. I cant help my mom on a daily basis. My mom doesnt want to put her in a nursing home, because she is afraid of her be abused. Im afraid of something happening to my mom because of all the stress.
RoseAnne

Lexington, MA

#135 Sep 9, 2011
Call your town hall and find out if they have an Elder Services. I'm from Malden MA and we have a wonderful organization in our area. We got home health aides and the state paid for everything. We had one aide come in 3X a week to bathe my mother and had another one 2 days a week that did light housekeeping. I know everyone hates "Obama Care", but the Massachusetts version was wonderful for my family. God Bless and stay strong.
Ellen wrote:
I have been caring for my mom since she broke her hip a age 88. She is now 92. It will be 4 years since the hip. The dementia starting before the break, but that sped it up. She has CHF. COPD, and some other issues as well. I keep her day to day exactly the same, and that helps us both. It is increasingly difficult, and what I ahve found is there is really no help. What i need to to take a few days off and just "be". It doesn't work like that. I can get ( if I ahd money) folks to come in 3 hours a day or so, but unfortunately i don't ahve the money. I could have left her in Rehab when she was there is past winter, but I brought her home. It is so sad to watch the decline, and the once bright stuning woman be so redused mentally- I am blessed that I have her, but it is so hard. I am scared I won't be able to continue to care for her if she gets much worse- Life stinks at this point
Carrie

Wailuku, HI

#136 Sep 9, 2011
I am not sure how many of you are dealing with a loved one who is a veteran. My husband, will lose his drug plan and Medicare supplement plan Jan 1 as the company he retired from is no longer going to provide this benefit to their retirees. So I have been slowing changing some of his medical over to the VA.(now gets 80% of his drugs thru the VA) I am finding veterans and widows of veterans are actually qualified for some care through the vets. Vets and surviving spouses can go into a VA assisted living facility. I understand they will also pay for Adult Day Care and perhaps also pay for some respite- to give care giver a break. I strongly suggest, those of you caring for Vets or widows of VETS go to local VA clinic or if there is a VETS support group near you do some checking. They will also send in CNA's to home to help you.

My Mother was a widow of killed in action WWII soldier, I wish to God I would have known she was entitled to the benefits, as we went thru savings for private care.(I was told the limit is $80,000 they can have in savings/assets, and if they own a house it must be put in a trust for them to qualify)

My husband does have Long Term Care Insurance with John Hancock which has been a total nightmare to deal with. Long Care had been paying for Adult Day Care, but he no longer wants to go, so I have had him 24/7 for over 2 months. It is a roller coaster, some days he is about 70% himself the next day he may start the day not remembering my name and calling me MOM. The strange thing, I believe he has actually improved cognitive wise since no longer going to the Day Care and being in his own home.

I feel for those of you dealing with the violent and mean ones. My husband, thank God, is still his sweet, easy going self and his personality has not been effected.

I have made up my mind, I can be miserable or I can thank God every day for the good days. I can see in some ways, I am starting burn out and will need to take advantage of the in home help soon. But until them, it just me & him.

Nicky

Cartago, Costa Rica

#137 Sep 16, 2011
I am so bitter I must admit. I am reading your stories, all of them so painful, but my mother developed dementia in her early 50s and is now age 60 and in the advanced stages and I would have given anything to have postponed this 20 years to where many of you are at with your parents. I am only 36 with 2 small children, the youngest age 4, and I am the only child, and my father is stressed to the max caring for my mother. She has become delusional and hostile. She sees me and starts crying and begs me to help her, but what can I do other than try to be positive for her? This is a horrible disease for anyone but I especially feel for those of us in our 30s and 40s faced with a parent with this disease, and many of us with children to take care of too. It is not ok to compare the care of children to the care of an adult with dementia. I would have 10 children over having one parent with severe dementia to care for. There is simply no comparison. The emotional pain and stress is so much more than 10 infants could inflict. This is not normal or natural, what has happened to cause this epidemic?? I fear everyday I will someday put my own kids through this hell. I love my mother with every fiber of my being, we have always been so incredibly close, and yet, she is gone, and the woman in her place is someone I never knew, yet have to call mom, and see her suffer, and know it is her somewhere in that suffering...God help us.
Christine AB Canada

Spruce Grove, Canada

#138 Sep 18, 2011
I too live with the guilt of wanting my mother to pass on. Find myself talking about her in the past tense. Her Dementia started 15 years ago. She has been in the last stage for at least 10 years. Her arms and legs are totally rigid, does not respond to sound or light, can not hold up her head, etc. To watch this process is so heartbreaking. It changes families. As I read all your stories I feel so bad for all of you. Open an old album and try to recapture who these people really are/were.
Carrie

Saint Paul, MN

#139 Sep 18, 2011
I feel like a duck swimming across a huge lake. From outward appearance I am moving calmly along, BUT
underneath I am paddling like hell.
Ev Australia

Maddington, Australia

#140 Sep 19, 2011
Went to visit my dad at lunchtime armed with his favourite snacks; salami, olives, cheese and a fresh bread roll. I like to take him special treats to break the boredom of nursing home food. Chatting away to him, he asked me if I had seen 'our' dad. When I spontaneously replied "You're my dad" he laughed and said he didn't have a daughter. I stayed and helped him eat and came home and cried for hours. I know in my heart that I am the most precious person to him, but I feel like my heart was ripped out. It is the most cruelest disease.
Debbie

Plano, TX

#141 Sep 20, 2011
Nicky wrote:
I am so bitter I must admit. I am reading your stories, all of them so painful, but my mother developed dementia in her early 50s and is now age 60 and in the advanced stages and I would have given anything to have postponed this 20 years to where many of you are at with your parents. I am only 36 with 2 small children, the youngest age 4, and I am the only child, and my father is stressed to the max caring for my mother. She has become delusional and hostile. She sees me and starts crying and begs me to help her, but what can I do other than try to be positive for her? This is a horrible disease for anyone but I especially feel for those of us in our 30s and 40s faced with a parent with this disease, and many of us with children to take care of too. It is not ok to compare the care of children to the care of an adult with dementia. I would have 10 children over having one parent with severe dementia to care for. There is simply no comparison. The emotional pain and stress is so much more than 10 infants could inflict. This is not normal or natural, what has happened to cause this epidemic?? I fear everyday I will someday put my own kids through this hell. I love my mother with every fiber of my being, we have always been so incredibly close, and yet, she is gone, and the woman in her place is someone I never knew, yet have to call mom, and see her suffer, and know it is her somewhere in that suffering...God help us.
Nicky, I totally understand your pain. My mom was only 42 when she got a brain tumor. I was 20 and pregnant with my first child. After surgery, radiation, and recovery, things seemed to be somewhat normal for a time, then her boss died and she lost her job and subsequently had to give up her home to live with us. The radical damage to her brain made her an angry and bitter person, she moved in with us, but was hostile to my children, especially my youngest, who was only 4 and the most tender hearted. As a mom, I would fiercely protect my children and this made my formerly very close relationship with her turn in to one where I just resented her. We moved her out for a while into an apt where we could check on her regularly, then she got breast cancer, and her memory was failing big time, so back with us she came. For 10 years she annoyed all of us to no end with her constant complaining and bitterness. She tattled on my kids if they left a light on, the garage door open, a door unlocked or a dish in the sink. It was exhausting and I found myself screaming at her to leave my kids alone and be thankful she had a family that cared enough about her to take her in. Then last July 2010 she had a major stroke (after years of TIA's)...she had surgery to remove a 90% blockage in her carotid artery and she had bleeding in her brain. She recovered enough to walk, but was falling all the time. In October 2010 I took her to the neurologist because I noticed that suddenly she was different, 180 degree turn around in her personality, suddenly she was nice and thankful for every thing. A scan showed another stroke, but the personality change was inexplicable because the stroke was not in an area that affects personality. My only guess is God intervened because he knew I was at my limit. So fast forward, my mom is 70 now and I have been dealing with this stuff for 28 years. It's horrible and there isn't a day that I don't wish God would take her home so she can stop suffering. And for that matter, if I'm really honest, so we can all stop suffering. Her personality has improved, but it doesn't change the fact that she is suffering so much inside. I take care of all her needs, and my husband babysits so I can run errands on the weekends, I also take care of 6 children under 20 months old full time in my home. It's exhausting. I just wanted you to know that there is someone that understands & you're not alone. Also, I just bought a book called the 36 hour day. I totally recommend it.

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