I have not posted here before but have been lurking for quite some time.
Everyone's stories are both heartbreaking and fascinating....and helpful.
My dad is almost 96, and while he has not been diagnosed formally, has had dementia to some degree for years which has advanced quite quickly over the last 10 months, most likely having to do with a pretty much constant condition of a-fib which his pacemaker cannot regulate. He was living on his own until April when a series of very questionable decisions forced us to urge him quite emphatically to move to assisted living.
At first the move made it seem like the move itself caused his condition to worsen, but now I realize that the new environment simply revealed all of the deficiencies. He soon was pit on hospice for failure to thrive (6 foot 8 and 150 pounds) and soon after that the facility wanted to move him into their memory care unit because of wandering, going into other resident's rooms, etc. At this point we decided to move him into another, much smaller ALF and to switch hospice services. So, he is getting much better care and seems not to really know where he is, but is not agitated and seems comfortable.
My question for any who have gone through this has to do with the speed of decline in someone this old and frail. He no longer speaks much, lost quickly his ability to care for himself, use the phone, tv, etc. All within a few months time. He is barely ambulatory, sometimes fairly lucid, but is increasingly vacant and quiet. I go daily and have, thankfully, great support from siblings though I'm the only one who lives near dad. I know there is no good answer for this, but what happens next and how long is this wasting away likely to go on? I know no one can answer that really, just wonder about other experiences.
Huskapet Glad you decided to post. Lurking is good but enjoy hearing the stories and experiences of all. What you ask is the million dollar question with no good answer.
My Dad has Vascular Dementia and my Mom has Alzheimer's. I can tell you there is a huge difference between the two. Mom's has been a relatively steady decline but Dad's declines were erratic and directly related to cardiovascular events. His last major decline was due to A-fib. He too was on Hospice for failure to thrive... at 6' he was down to 130 pounds at the end. He did go from AL to the memory unit. I had no choice because Mom and Dad were both wanders yet insisted on being together. Dad was very much like your Dad for the last year. When the end came it came quickly. He was up laughing with my Daughter on Saturday but refused to get out of bed on Sunday. He stayed there Monday as well but go up on Tuesday to eat breakfast. That was the last time he got up and slipped away quietly on Friday morning. I do not believe it was the dementia but the cardiovascular complication that ended his life.
His time line... he was diagnosed in 1998. He was at home with Mom as his primary care giver until 2006 functioning very well. Mom was diagnosed in October 2006. We kept them at home for a year afterwards. Dad did well but Mom was having difficulties so they moved to AL in September 2007. Dad's A-fib started February 2009. They stayed in AL until April of 2009 when they had to be moved to memory care in another facility because both were wandering out of the building. Dad's wandering was because of delusions related to the A-fib. Dad did well until October of 2009. He became unstable on his feet and started falling, the weight loss accelerated, and he spent much more time in bed. I called Hospice in January 2010... probably later than I should. He was up in his wheel chair, sometimes walking with assistance, and rather lucid until the last week. As I have said the end was quick.
It is very difficult to tell with Vascular Dementia because it is tied to the cardiovascular problems. I would watch his cardiovascular condition before the dementia.
The Following User Says Thank You to Gabriel For This Useful Post: Huskapet (10-16-2011)
Deb, thanks so much for the reply. It does seem like the dementia follows a really irregular course, which was part of why my dad managed to mask a lot of his difficulty for so long, especially in front of doctors.
He has some COPD, too, and has survived so many things (decades of melanoma, lost an eye to it) that the rapid decline, even at 95, seemed puzzling. Yesterday he didn't talk for a long time, then sort of jolted awake and asked for some money to build a fence.
One other question- he seems to be sleeping with his eyes open. Is that sleep? I keep checking to see if he is breathing, because it looks very odd. And scary.
My husband is 85 years old and suffers severe COPD. He also has dementia or delirium often (I think it's from hypoxia (not enough O2 in the brain) and /or hypcapni (too much carbon dioxide)) and is not always lucid. He also sometimes appears to be asleep with his eyes open. I don't know if it's really sleep or just a state of semiconsciousness.
However I would like to address the issue about your moving your Dad to another ALF. I am wondering why? Any dementia elders do wander into another resident's room. My FIL's home does the same. Often I saw some stuff left by the other residents in his room. They call it shopping. This is part of the symtoms and is not harmful. Just kindly guide them to another area.
This is not enough reason to move him.
Any home can have hospice. You can ask for home hospice to come to this home where he is. You don't have to move in order to have hospice. Given his old age and dementia, it is not wise to move. Any person with dementia will always decline a little bit with the move. The old memory will be gone in the new place.
e.g., my FIL moved to this home from IL. Now he forgot about IL completely. He is in stage 7 of Alzheimer's and has stopped walking. We are buying him a wheelchair soon once the doctor prescribes it Thursday as he uses it every day to go to bed (not all the time yet as he also uses his walker with difficulty and everyone has to tell him how to go for each step.) He also talks less this year. He is on pureed food for choking issue. He is 90.
My FIL now loves everyone in the home. I cannot imagine what would happen if we move him. He will probably have hospice and move to the west wing for nursing home care (now he is in the East wing for residential care.)
So you may want to decide to leave him in the same home unless there is some issues that you find that are not fit for his needs.
About how long it is to live, it is hard to say. I know about Alzheimer's but not vascular dementia. I think vascular dementia depends on the drugs he takes and also depends on how sick he is. Usually in late stage when they stop walking/talking and eating, it is about time for end stage. It may last for 1-3 years. Everyone is different so it is hard to tell.
Thanks Nina. A bit about why we moved him from one ALF to another- the first place we moved him to, in May, was when he pretty much understood where he was going. It was big, had a lot of activities which at that time we thought he would like, and was like a country club. We did not know how fast he would decline. He never did learn where his room was, and was alone at night in his room, often rather agitated. After about three months, they wanted him, understandably, to move into their memory unit, doubling the cost to nearly 7k per month. They already had urged us to start hospice, which we did. Since we were going to have to move him to the memory unit anyway, with no guarantee that he could stay there if he needed, for example, to be fed, we opted for a very small private home, the same one my mom spent the last 3 years of her life in after a Massive stroke. It is locked, we have known the owners for a decade, it is only 2 people caring for him rather than a massive (with rapid turnover) staff, and people were only a few feet away at night. He can call out and they get up to help him with whatever, whereas at the big place he never got the hang of using his call button.
The only reason we did not place him there at first was that we thought he would object to going in to the place where my mom, his wife of 60plus years, had died. By September he really did not even know where it was we took him, and still seems to think he is at the first place.
As for the hospice, we switched hospices when we moved him because of a gut feeling we had. The difference has been night and day. That is another whole story-not comfortable about the relationship of big ALF to big hospice, but anyway.
Thanks everyone for your thoughts. He was quite chipper today, even made a joke. (one i have heard since the 60's, but still)
Huskapet.. I understand exactly why you moved him. Each situation is different and they need different things at different stages of the disease. The AL Mom and Dad moved to first was also a large facility with over 300 resident and a lot going on. Just like your Dad my parents never did get the hang of AL. Mom could find their room but not Dad. If she left him, he was lost. Most of the time they just sat in the room together as they had done at home. Yep, care staff was scarce, especially when they didn't understand the call button. I did move them to Memory Care but in a smaller facility with a maximum of 24 residents.
I too have watched Dad "sleep with his eyes open". As 1eunice said a lot has to do with the oxygenation of the brain. A-Fib will cause insufficient blood flow as well as the COPD. Low oxygenation of the brain can result in the delusion, hallucinations, sleepiness, and many other symptoms. Dad would seem to be out of it one minute and then "wake up" with some strange statement. One day he was up and chatty and the next day he would not get out of bed. It's definitely a roller coaster... with no rhyme no reason.
Yep, there are good and bad hospice just like there is good and bad everything else. Some are definitely better than others. I am blessed with a good hospice team. For anybody with a loved one on Hospice please remember that you do not have just one option. If your team is not satisfactory for your needs then hire a different hospice or request a new team. There are actually three hospice organizations that service Mom's area.
I do hope your Dad continues to do as well as he can
Yes, a smaller home is better. My FIL is in a nice and cozy home with 32 residents each side. There are 64 in total. The ratio of caregiving is one caregiver per 4 residents and etc. In the other wing, they have 2 caregivers helping one person at times.
Indeed the smaller the better. This home is designed just for memory impaired.
It is all good information. As for my dad, who is nearly 96, I am pretty sure that there is nothing that is reversible. His cardiologist did not want to put him on blood thinners because he is "a bleeder", primary doctor agreed, the a-fib would just have to be watched.
Now we have hospice, so are not being aggressive with anything. Falling is his greatest risk at this point; he has had the low blood pressure on standing thing for a long time. I do enjoy learning about all of this and hearing people's stories, thou I wish I did not have to.
Today is the first day in ages that I have missed seeing him, but it should be fine. Had a chance to go to the waldorf, everyone told me to go!
Last edited by Huskapet; 10-22-2011 at 02:33 PM.
The following user gives a hug of support to Huskapet: luyingjie (01-24-2012)
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Glad you went Husk and all those that told you to go are right. Taking care of your emotional and physical well being is just as important as taking care of your Dad. Sometimes we do need a break!
Your Dad sounds much as mine. He also had A-Fib and we decided not to treat it except to watch him. He too was a bleeder. You could look at his skin and it would roll up and bleed. Being a fall risk as well they didn't want excessive bleeding if he were to fall and injure himself. He also had the drop in BP when he would sit up or stand. Weight loss was a big issue with him. He was down 50 pounds at the end. It is truly a balancing act. He started the A-Fib in January 2009, I called Hospice in January 2010 and he left us March of 2010. He was just short of his 90th birthday. I will say when the end came it was quick... just a matter of days.
I am glad you had a good day off today and hope your find your Dad as well as he can be tomorrow
The following user gives a hug of support to Gabriel: luyingjie (01-24-2012)
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Dad passed early this morning after severe downturn that began Friday. I am so grateful to everyone on this board. Though I have not been here long, it has made a world of difference to me. Because of the information and kindness here, I felt somewhat prepared and comfortable the various stages that presented over the past few days. He had only one really painful day before we started the hospice meds, and it was all pretty peaceful. He was two weeks shy of 96 and it was his time.
More later, but thanks again.
The following 2 users give hugs of support to: Huskapet KrenM (11-14-2011), SandwichLady (11-14-2011)
Huska, I am so sorry for your loss of your Dad. It is never easy. I am just glad that you found some comfort here. A burden shared is easier to carry. Your Dad's experience sounds much like my Dad's. There were a bad day and he left this earth peacefully... at sunrise... several days later.
Please let us know how you are doing. Take care of yourself and know that any emotions you feel are ok... and there will be a wash and rush of many emotions. Remember to take care of yourself and to do what you need to do at this time.