She is already later stages. But is she now entering the last stage? I know everyone who suffers with dementia declines at different rates. I have read all about the stages of Dementia. But I would like an opinion, from personal experience.
This is what is currently going on over the past month: Mom is sleeping 12-13 hours at nite and even dozes during the day(3 months ago the woman would only sleep 3-4 hrs/day). Now I have to force her to wake up in the mornings. She used to drop her pants and go to the bathroom anywhere. Now she has no clue that she needs to use the bathroom. I have to force her to sit on toilet. I have noticed that she wants to hold her urine.(she had a severe UTI a few months ago and now her dr tests her every month for an UTI). Mom up until recently was out of control with her anxiety. Now she is very calm and relax almost showing no facial emotion! She really doesn't even want to talk.I have noticed that she is having trouble eating and drinking. Not that she is having trouble swallowing,but is unable to hold her sippy cup right or figure out how to feed herself. She looks at utensils like they are a foreign object, I have tried finger foods (especially sandwiches)and she can't seem to know how to pick them up and eat it. She is also begining not to know her surroundings or who she is. Its not that she is confused, she just doesn't know. Her gait is getting really bad at this rate I don't know how much longer be able to take her out without use of a transport chair.
Mom has hit bumps in the road before and bounced back to a degree. But this time it feels different. If she is moving into the end of Dementia I would like to know what to really start watching for and what to expect? I want her to remain at home for as long as she can. If she is now entering last stage of Dementia, does she have months or years before I need to consider placement outside of her home?
Thank you for caring so much.
Carol
This is so where I am right now. My mom has had severe dementia for 4 years, this year being the worst. She has to have total care, and she doesn't speak any more, but will jabber sounds like a baby does. They just put a feeding tube into my mom this week. Yes, she quit eating, and drinking and even her doctor did not want to have a feeding tube put into her. What right do we have to play god? I see my mom sitting in her chair (before this past week) with such a sad frown on her face, shaking her head back and forth in a "no" position and tears showing in her eyes, looking at me and to me saying, "please, no more - let me die!". I am not her caregiver, my 88 year old father is with the care of daily case workers from CCAC. She has not "quality of life", said also by her doctor, so why would it be reasonable to put in a feeding tube? I am so sick with the decision made by my father and sister, that I almost lost my faith and it usually will get me through anything, but I cannot understand the why of it. I believe my father loves my mom, but in all honesty he needs her pension to continue to live in his home, and so he needs her alive, no matter in what conditions. So, please for those out there who are dealing with this issue of, "quality of life" consider your patient, not yourselves in prolonging their life for the good of money, fear of death or for any other reason.
i am an only child and watched my dad go through his life journey almost 12 years ago as my heart broke everyday watching him slowly slip away from my mom "which was his care taker" and me... how i cried cried and cried and was strong enough to be there when he was in the hospital holding his hand with my mom by my side as he left us...even though i was married with 4 children at that time and had other family members in the room at the time of my dadi's passing(Thank God)i will never forget the feeling ...the trio we had between my beautiful mom,dad and i had been broken...i felt alone and scared even though i new i wasen't....my beautiful mom did a wonderful job careing for a man that gave us both the most beautiful life anyone could...God truly did bless me with two beautiful souls that i proudly call my parents..
Unfortunatley to my sadness my mom was diagnosed with dementia about 6 years ago and is now on her last stages...my husband has taken on the burden of working two jobs so i could stay home and care for my mom through her journey along with careing for my two youngest children"out of my six" horses, dogs,birds,turtle..24/7 day night night day it's just what i do because she deserves me too and i am blessed to be able too....my life has been revolved around trying to figure out what can i do? what can help her? on top of that my mom always suffered from anxiety but now it has just become uncontrolable" sad to say" spending hours n hrs n hrs talking to doctors, er visits, dr's, hospice dr's, ummm on the computer trying to find somethinggggg somethinggg that can fix this!!!! mentally and physically the desperation i feel isen't fixable so i finally break down exhausted and crying and say to God.......i'm sorry but my dad? and now my mom? i soul searched within myself and realized all i was doing is making myself sick and not being able to change anything due to destiny as my mom use to say to me" she believed that the day we are born is the day we have our destiny all written out to how it will be at the end and we need to respect that.This beautiful women is going to leave me due to dementia? and now what? so i have slowley tried telling myself that i can only do what i can do and the rest is in Gods Hands and hope to be able to keep it together and not let it scare me... Life is beautiful and death is inevitable...that's why" as my dad would say to me" life needs to be respected and never taken for granted..live life on the right road and or learn from your mistakes so at the end of your journey you can be proud of what you have accomplished and how u lived and loved....my mom is on her finall days and i do the best i can do keeping it together for her and for my family and myself. i will try to continue my life and live it to make them both proud of the job they have done in their lives.....and i say the same to everyone..May God keep you all strong and remember your not alone....xo
The first time it was a young speech pathologist who recommended the tube. She explained why it was her recommendation. Hubby and I had discussed this before and were prepared with the answer, No. Only then did she say she respected that decision and she certainly wished that decision had been made for her grandfather.
I'm glad my brother had a feeding tube. I'm glad my husband did not. And having looked up the research on the subject, I think that patients are not given full information about the benefits and risks at the time they are expected to make a decision.
There is no way Dad could handle her anymore. Besides all the other things going on she no longer can move from place to place without a strong person assisting. She is becoming even more incontinent although that has been an issue to one degree or another for several years.
He has been visiting 3x a day but said he was going to cut back to 2x. He stays about an hour. She does know us and is happy to see us but has little to say. Sometimes she is adamant she wants to go home but other times not. I know this has to be but it is so hard for her. She was happier when she was living with my Dad. He has been her rock.
You are describing what my mom went through and she died almost a year ago on May 26. By this time she was full time in the bed and of course had a hard time swallowing. She couldn't speak but when we looked into each others eyes we communicated just fine.
Please don't let anyone talk you into a feeding tube. It's traumatic and painful and like others have said, to what end?
I went out and got the Junior's Baby foods and would heat a little of that up and if it took an hour to get her to take some then that's what it took. Mom was not on any pain medication and was not in pain. She was as peaceful as one can be in the situation.
I did what Carol talks about in that I told her all the time how much I loved her and i would sit with her and hold her hand. I told her over and over that she was the bravest person I had ever met because she dealt with her Dementia with all of the grace and dignity a person can when they are taken apart by this disease.
The morning of the day she died I knew something was different but there was never ANY question in my mind that she would be DNR. I panicked for a moment and for the first time called Hospice. The two women who showed up were true angels and calmed me so that I could get up on the bed with my mom and hold her. When she died in my arms I stayed on the bed (she was in her pretty room at home) with her. The hospice nurses made no move to resusitate her because they have seen this many times and knew better than to prolong someone's agony.
I did not want to resusitate her because she was free at last.
She died peacefully and I have absolutely no guilt at being the one to make sure that she was released from this terrible disease.
When the mind and the body are finished here on earth it hurts those of us who are left behind, but you tell your mom that you will see her again in the blink of an eye...
Release yourself from this terrible disease also. You are a good and caring person. DNR.
lovbob
I think you have to watch when she swallows to make sure she does swallow once or twice when eating or drinking, try it yourself, when we have a drink we swallow the main drink then what is left in our mouth we swallow again, so watch out for that, if she doesn't then it will go to her lungs then I think is the time when you are going to need help and also make sure she is upright when eating and drinking.
You also have to look after yourself, because I had depression and Bells Palsy when looking after my mother before she went in the home. So be careful you still have your life, You can put her in a home without feeling guilty because you have done your best for her. I used to cry with the way my mother was it was as if she knew she was going down hill so would torment the life out of me, I would be crying to my friend on the phone and the social services till in the end they said enough is enough she must go in a home now or 'we' will have two people on our hands to look after.
I have my life back but no friends because she manipulated me before she had dementia I had to report to her every day or she would rant... always has been bad tempered. My computer is my best friend... Just be careful yours doesn't end up being your best friend. Live your life now, you can't live your life for your mother she has had her time and you have done your best... have a life while you are able to... Take Care
I would love to have her home but know I couldn't manage especially changing her as she is now incontinent both ways and if the hospital have a struggle keeping her clean then I know I wouldn't be able to. They are wonderful with her in the hospital I wish she could stay there. But they will need her bed eventually for someone who was in the same condition as her when she was admitted. And away from all the other people en-masse in the room in the home she is more concious of visitors or the staff and sometimes mutters words to herself but can't get what she is saying, she says thankyou for a drink or when fed she thanks the staff.
Mother isn't totally well but not dying now... they thought she was when admitted. She has to have her food pureed and her drinks thickened but on the whole she is fine.
Thankyou for all your comments and boosts for me..
Take care of yourself, too.
Carol
Swallowing is an interesting issue - sometimes it seems it is difficult and other times she devours everything in sight. She will eat toast with something on it - so I have been blending up vegetables or mixtures of fruits with cream cheese, etc to put on the toast to get "better" food choices for her.
When I started caring for Mom 3 years ago she could not walk...I started getting her exercising and walking - started by her pushing the transport wheelchair so we had it in case she got tired. And had her walking a mile a day - we still walk but modified.
Mom seems to know deceasd family are deceased - she does not ask about where they are but talks about talking to them. Talking about my brother is recent. She rarely mentioned him at all until the last few months.
Pineapple and Boston I feel for the both of you and you are in my thoughts.