End stage dementia - what to expect?

My Dad had a double thalamus stroke in 2005. It started with him ...just not feeling right and then seeing double. He was always so temperamental and didn't want to wait at E.R. so they went home. The next morning it was clear that he did have a stroke. Things may have been different if he had stayed, had an MRI, and clot buster to stop the damaging affects of the stroke. The steady decline in health both physically and emotionally has been very hard on everyone. It does slowly rob you of who you are. Falling, both while standing, standing even out of bed, paranoia, loss of bladder and bowel, difficulty swallowing and verbal exercises with 'K' words helps the throat muscles for speech and swallowing are all normal. He can no longer walk or even stand alone. He was in care facilities but accused many of hitting him. They would also leave him unattended in wheel chairs after therapy and he would try to get back into bed and fall. We took him home with Hospice Care. Doctors, Nurses, people to bathe and so on. Recently he has accused my Mother of hitting him and points to old wounds that I know she didn't do. All this is extremely painful and my heart goes out to all of you experiencing this. There is a difference with different services providers and homes as to their directives. Some treat for end care (just help them die), others will actually help you prolong life with extra care. The problem is that hospitals , care facilities and doctors groups ARE all different and YOU DON"T KNOW WHO does what. It all seems very secretive to the family. YOUR idea of care may be different than THEIR prerogative of care. I can't help you with this because we are still in the midst of our own battle. Most (35%) Alzheimer/Dementia patients' health declines at different rates with rapid and then plateauing periods. Upper Urinary Infections/sepsis can rapidly decline the health and also make marked decline of mental status. You will see the mental loss after the infection is clears up. It can also cause kidney damage. Best way to avoid UTI is keep them clean in the diaper, drink plenty of water ... 4 - 8 oz liquids per day average. This includes wet foods like fruit, jello, soups... and watch for them to get a slight fever with lethargy, sleep more, stop eating/drinking and it happens fast. Maybe a week or less. They need hospitalization for several days with immediate broad spectrum IV antibiotics. Blood tests to then put them on the correct antibiotic to kill it. This will save their life if caught in time. It's a slow downhill path with more pain for the family than the patient. Very very painful. Hugs to all of you and courage is for the living! God Bless

I am weary but I think I wrote somewhere last night to notify all of you wonderful people who were there for me. My Love passed yesterday afternoon. He was very peaceful. Most of our family are in Germany. I miss him terribly. My pastor just happen to be here when it happened. God is so Good. I could not have taken this path without all of you and the wonderful support you offer back and forth.

I thank God that I was chosen to be his caregiver for the past year. He had Parkinsons. When he started to decline it went SO fast.

He is a Christian which made the death easier for me. He never yelled out or was rude except constantly wanting to go to the bathroom. Somehow I could not get him to understand that he had a cathater.

How lucky am I that I was able to feed him, wash his body, wash his hair, massage him daily and do all the things that we all do. What a way to end the journey - by touching every inch of his body. My hands carry the memories of him as well as my mind.

Now my journey through mourning begins. God promises that He will turn my mourning into Joy. My God is so good. He gave me so much peace. I felt a warmth all over me the moment he passed. Thank you all of you.

I'm so sorry for your loss. I too wish for things to be over. I hate seeing my mom continually progress. 12 years of this. Hope it's not much longer although I will be heartbroken when it is over and losing my sweet dear mother. I pray that your good memories will help you celebrate her life. God Bless....

I am so sorry you are having to deal with both parents declining. With sepsis, an elderly person with dementia has little chance of recovering. You might have a legal malpractice suit from the osteo doctor who performed the surgery. However, get your parents together and pray both have a peaceful death.

Oregongirl, I know where you are, it's so lonely, single but married, together but alone, and all the decisions are yours.

Put the knife away.....Yes, we watch them die slowly and I agree, it seems so unfair that they suffer so much. I know what you mean about almost wishing it were over. Especially, when I try to remember I am on my own here. I had a roofer come and give us a bid on a new roof. I started to share the info with my Partner. He looked at me like WHAT? Then the other night I heard a noise outside my bedroom window. I started to go to him for protection and remembered, I am on my own even tho he is in the house. I cannot share or discuss decisions with him. They are on my shoulders. I am the Caregiver and the decision maker. It is tough.

Thank you both for your condolences and good wishes. My screen name is the title of a book I wrote. You can find in on Amazon. It covers the first seven years of my life as a caregiver and it is written to support other caregivers.The funeral yesterday was lovely, out in the countryside in balmy weather. I felt so sad for the husband I have lost piece by piece, day by day. I will soon begin to remember the good times we shared, the positive memories and the past really hard times will hopefuly fade from my memory. Death hit me like a ton of bricks, even though I had been hoping in a sense for it for a few years. The grief is great, but my friends and family are being so supportive --and so are you. Thank you from the very bottom of my heart. Phyllis Palm

Needless to say, this message is for PutTheKnifeAway - you were the person I was referring to with the husband having dementia. I have only read a couple of posts here, and I most definitely did NOT see the last one you made. I was unaware you had lost him. I am so sorry for the first loss with the dementia, and then the second loss of his physical presence as well. I actually posted a second comment after my first one but it hasn't posted on the site yet - I think I should read MORE on the threads before commenting.

Puthatknifeaway, I am so sorry for your final loss. Please accept my condolences.

Now you can grieve in conventional ways that others understand. We suffer many losses on the way to our loved one's death. We've been doing our mourning for a long time by then. May the comfort and well-wishes of your family and friends help you through this difficult time.

I'm skimming these - my mother has dementia and I see on here there is a poster who has a mother AND a husband with dementia - I can't tell you how my heart broke for you - TWO chapters of your life at one time - my eyes are blurring from the selfish image of my own husband and imagining him that way, even though one of the reasons I am joining this site is due to his lack of concern for me and his lack of help in the 'mom' area. So much more is broken when a spouse has dementia, in a different way. A parent is supposed to love you and cherish you no matter what, and you are almost guaranteed that in life, so when your mother doesn't want anything to do with you and you were the one who always made her feel better, that part of your life is over - the last finger on your last hand that you are holding on to your parents and your childhood is let go, and I almost feel like the slow emotional detachment of a spouse and the looking back and remembering on my end, my brain screaming at him to ask me how I am feeling or what is progressing with my mother, or even what I did at work - almost psychic willing to care - it feels the same way - he is 'gone' from me, but at least he will be able to still know love, whereas your husband's last known love - is you,
Things happen for a reason, although I would curious to know what reasons the last 8 years of my life are centering on - right?!

My husband of 25 years died tonight of Alzheimer's disease nine yaars after the diagnosis. Hospice care was wonderful . I can now miss the delightful man he was before this dreadful disease stole him away from us all .

Oregongirl.....I think our friends are busy with their own lives. I don't think it's that they don't care but just they are busy doing and going. I used to play golf 2 times a week and had to stop because of caregiving. I was able to go to lunch with some of my old friends a few weeks ago and found out so much of what was going on. One had lost her job, one is taking care of grandkids, one's husband has been going through BAD parkinsons.etc . Some don't care but the majority are just plain trying to figure things out themselves. I totally agree with the website. We are a village of people who are going through a rough time no matter what that rough time is. I found myself today answering the question "how are you?" and when I listened back to what I was saying, no wonder people don't ask anymore! :)) Next time I'm asked I will make it a short, sweet and answer....."hangin in there". Just a thought about friends but just know that I pray each day for all of us on this site and those who haven't found us yet.

for rose143:
alzheimers.about/od/behaviormanagement/a/Foul-Language-And-Dementia-Understanding-Why-It-Might-Occur-And-How-To-Respond.htm .

I am also reposing a loving dementia article which I wish I found while my dea mother was still alive (you have the opportunity to profit from my research while your dear one is with you):
oca./parish-ministry/senior/personhood-and-an-aging-mind-and-body

Oregon girl, need to get out and ask others to sit with your mom, dad or whomover you are caring for. Believe me!

Tina, I have learned so much from listening to all of you. I read each response as there are always hidden messages that can help me. Tina, we have non profit hospice. In order to sustain their help, they have two sales a year in a HUGE hospice sale. They have a HUGE warehouse that they have these sales in and people are there by 6 am in line for opening at 8:00. People come from all over to attend this sale. Many donate new items to them to sell. I bought a brand new 4 man tent for $10.00. Over the years they have been such a help to so many of us.

Tina and Equinox, and Amy Grace,,,, Once a week does not sound right. Our Hospice comes at least three times a week. They call first as if you do not need them, they can be used somewhere else that day. But even if in the middle of the night we can call them and they will come. As for ambulance, as I have said before, WE LIVE IN THE MIDDLE OF NOWHERE. Our ambulance comes and picks us up and if it is not urgent we go to a small hospital 30 miles from here, if urgent, we are taken to the airport where a operating room on wheels (will fly us to the Big City to the hospital there. That hospital by car is about 2 hrs away. By air much faster. We pay a yearly membership of 45.00 and we have FREE ambulance and air flights.

Wow Amy 100 years old. That is amazing. My partner is 88 and will be 89 in November. He is doing up and down with his illness now. He speaks only to me as he cannot hear anyone else. Even if they are in the same room. He has adjusted his mind and hearing to me only. I feel like I am translating...LOL

Hey Detuchka Thanks for the website...

I cannot tell you all enough for the help you give me. I do not know how I would manage without this site. I certainly have no friends anymore. I cannot attend any parties, dinners or lunch with the girls. I pretty much have been taken off speed dial of all my friends. Not my request, just happens that way when you are 24/7 caring for a loved one. I think that sometimes they are afraid they will be asked to help. My niece who was angry because she did not get the back up Trustee position does not even email me. So much for her prayers she used to send me. How much did she really believe??? I am not unlike any other care giver. We are abandoned because we are willing to care..

Hospice is wonderful for patients with vascular dementia at the last stage. My dear mother had VD, was under hospice care from Dec 7, 2011 to January 11, 2012, when she died (I remember it well). Read about late stage dementia at dementiatoday/help-for-caregivers/later-stages-of-dementia/. You may see it plateau, then drop severely; at this late stage, hospice is a blessing. At late stage, the patient won't respond, talk or even control their movements, though they may look at you and say something. They need alot of help with everyhting, and may not even eat. Mom stopped swallowing about 11 days before death. Stay with your patient as much as you can to hear their feelings and emotions. Mom lived to age 85, and did not die of breast cancer for which she was treated 20 years earlier - a blessed life with us!

NY2015,None of us can do more than we are able to do. Sometimes what we ask for has less priority than other folks' needs. Be kind and generous in your thoughts. You will live longer, stress-free than holding on to past unfairness.
About hospice care, please understand there are two types. One is for profit and the other is not for profit. There are few not-for-profit, such as Hospice of the Valley which is nationwide. They will not abandon you or push you to do more for your loved one than provide comfort for him or her at the end of their lives.Our family members with dementia or Alzheimer's disease are not going to get better. Let's let hospice care at home or in a facility ease the transition for them and for you.They just ordered a hospital bed for my husband. He has a fever of 102. I doubt if he will make it to his 86th birthday on July 30.

Wow - your problems sound like mine!!. My mamma is a memory care unit under hospice now. As stated it does not mean your loved one is going to die this minute and there are multiple advantages to hospice care. Here in NC the hospice will pick up the tab on incontinence package and some medications which helps with private pay facilities. I have opted for comfort care which means no more ED visits or ambulance rides ($1000.00 out of pocket) no more routine labs. I still am in shock at mammas rapid decline but with vascular dementia this is not unexpected. The hospice process will probably be a God sent blessing -one thing I have learned is to take advantage of all the help God sends your way. Also take advantage of any help that people offer you do not have to do this alone. Good luck in your journey and I will be praying for you and yours.

It is so sad to read all this. I worry about how the end will be for my mother. Her dementia is progressing rapidly, and she is physically failing, becoming weaker, more tired, (because she barely eats) but she is healthy. She has nothing wrong with her, never gets sick. At 100 years old, she is living in AL and still able to walk on her own, get up and dressed, etc but her mind is going. She has no memory, can't run appliances, even the coffee pot, doesn't take care of herself such as shower, file her nails, put on makeup, has to be reminded of meals,can't work her hearing aids, etc. Mentally she is miserable. She will wear filthy clothes over and over, repeats the same thing ten times in an hour, etc. We are praying that old age will overtake her before the Alzheimers incapacitates her and turns her into a bedridden vegetable. Its a big worry for us, whether her strong stubborn constitution will keep her alive for years languishing in a hospital bed with no mind left.

I have a new question.
My husband swears alot and calls me names he never did before dementia. What can I do to keep myself from taking it personal and feeling angry that this has happened to him?

Hospice at home care provided round the clock care every 8 hrs for my dad. . Hospice at nh provided 1 or 2 times aid to bathe mom. (Bed bath) nurse will come once a week to check on body status. Skin appearance, med check, equipment update. If your loved one is with hospice at nh be sure you are able to have easy access to communicate. My first hospice lacked in communication. I fired them. I was surprised how quickly I was able to do that. If this should happen be sure not to stop hospice so theres a gap between the new hospice. Be sure you have another hospice chosen to be able to transfer care . You still have to go through the paperwork.
Hugs to all!

I must say everyones response was very helpful to me with my mom in law diagnosed with dementia in January, she has had ups and downs since then and her doctor recommended hospice, I was apalled!! I thought mom is not on her death bed, but thank you everyone to explain your experience with hospice! we do not have a hospice facility where we are located but they will come to your home which is where mom resides, with us, so I will look into this in hopes of improvement with her current condition, and yes, I do agree hospitals are not as equipped for dementia as one would hope they would be. thanks all!!!!

In answer to your question - I almost forgot - that you want to put your dad with your mom, some people here are advising you that it is a good idea and are also saying good luck to you. Guess what. I would have to say good luck to you too about this. My mom broke her hips and I had her in the same nursing home as my grandparent at the same time trying to get physical therapy too and guess what they kept telling me? That they did not have the staff to be bringing her next to my grandmom yet they had a volunteer office. I had to be the one to go and look for her then bring her over into my grandmom's building. This shows you the type of beasts they have in these places. The next time I hear someone talk about a nursing home or hospice believe me I will know what to say to them. Take care

I lost my a grandparent at a nursing home some time ago due to their gross negligence. They were indifferent to her needs. They did not help her with all her medicines. They did not help her to the bathroom and so she was complaining of belly pains everytime we saw her. She could not see and so the animals there said that she was deaf. They did not want to change her clothes, but yet they kept her there because she had " good insurance " as their social worker said. Her insurance was paying up to $ 500 dollars a day for care that she never received. I had to change her clothing and help her to the bathroom. The list goes on and on. Whoever says that hospices, nursing homes and hospitals are the best are either idiots who don't know what they are talking about or rats that work in those places themselves. I saw it all with my family and it was disgusting. They will discriminate against your loved ones because legally if your loved ones are over 100 the law protects those beasts in nursing homes. That is the great United States system. How do you like that? In your case Runner123 let your father sleep. Sleep is good for them. I know from experience that if they do not sleep they will start to hallucinate and their health can become affected. I hope your dad's dementia improves after the infection in his leg goes away. I would not recommend that he goes into a nursing home or stays in a hospice if you have more family who can help out or if you can pay someone to help you, but FOR SURE if he is close to 100 and cannot move you will be signing his death warrant if he goes into a nursing home. Time and time again here in my state I hear about nursing home abuses and there is nothing that we can do about it. Our politicians dont care about it and our governor protects such institutions. If you love your dad and you can avoid nursing home then let him stay with you. I took care of my grandparent for 35 years myself. I did not even raise my own family because I loved her with all my heart and soul. I have seen what greed does to these animals who work in the health care field and they know they can hide behind their licenses or inside the name of their institutions once they kill someone. I think you get the point. May God be with you and your father in these trying times. Read up on your father's condition as much as you can. It will help you also made the right decisions.

Absolutely agree with the other posters who said check on the hospice first. Make sure you are ABSOLUTELY CLEAR on what they will provide and what they won't before you sign anything. I was green on this subject when my mom went on hospice. The one recommended from the hospital was more than happy to give pain medicines, even when it was not necessary, imo. They had no intention of doing anything that would allow her condition to improve except on her own. Unless there truly is a big difference in hospices, I would not recommend it to any patient unless they were declared imminently terminal.

End stage dementia patients can require 24/7 skilled care, because as they deteriorate, they require complete care.

In my FIL case, hospice was with him 24/7 for about 3 weeks before he passed. Up until then it was the facility aids doing what they could. Dr. suggested hospice and they were wonderful. That's in Texas. Best of luck and many prayers.

Runner, you probably feel like you've dropped into some level of hell. I concur with those who advise bringing hospice in sooner rather than later. End-stage dementia is a more physical ailment than previously thought, and they lose the ability to participate/cooperate in medical procedures and treatment. All the poking and prodding are likely to frighten them. And what's the point? Your best bet is to make him comfortable with palliative care. Make sure his emotional needs are met and if that means getting him close to your mom, insist on that. They should be able to deliver hospice/palliative care in virtually any setting. He probably doesn't want to be in the hospital, you want him to be with your mom, so set up a meeting to get him moved, stat!

I'm sorry to hear about your dad. Sepsis is very serious and some patients don't bounce back. As a former hospice nurse, I watched many patients experience the natural decline of aging, accelerated by serious infection. As the elderly decline, it is not uncommon for them to sleep more and eat less. They can lose their gag or swallowing reflex related to this decline or other disease states like strokes. I certainly agree that it's helpful to keep your parents as close as possible during these difficult times. Those relationships are particularly comforting to each other in the later stages of life and physical decline. The tricky part is finding a close facility to accommodate that contact. Sometimes you can arrange for them to share a room if the financial resources are available, depending on the physical status of each spouse. God bless.

Yes I agree with Wddle. Our Hospice can administer meds, where some cannot. The hospice will also instruct you how to administer the meds that are used to control pain etc. Our Hospice is volunteers, but our nurse is paid as is our PT by our insurance.