I'm new here and wanting to make new friends who have Vascular Dementia caregiving experience!
She's my mother-in-law. She's 86. She moved in with my husband (he's an only child-so we're it) and I on July 3. After a spring and summer of in and out of the doctor's office and hospital due to her loosing her strength/memory and eventually couldn't even speak at one point, she was finally diagnosed with Vascular Dementia. She was living in an independent apartment at the time. We had already uprooted our family and moved to her town 2 years ago because she had started making poor choices. That was step one. Then a year ago, we had to take her car away- again because of poor choices.(I became her chauffeur) Step two. Then as I said, we had to move her in with us permanently due to fact that we realized she was not taking care of herself and the Vascular Dementia diagnosis. Step Three. She argued and fussed, but we just smiled and changed the subject. Within two weeks, she was no longer dehydrated, was eating REAL food again(not candy and sweets - her food of choice) and even though she would not admit it, was relaxed and much more peaceful. I soon realized I truly had an 86 year old child. When she tries to rebel about something, we simply applied our years of child rearing principles and she responded in kind. (our sons are both in college right now-19 and 21)
So, what's my complaint? Just your experience and advise. My husband and I just celebrated our 29th anniversary. He's my best friend. And we protect our marriage and our family with every fiber in us. He has never had a good relationship with his mother, so it's nothing more than miraculous that we are at this point in the first place. He was so close to his dad, but he passed 20 years ago. And he knows it's the right thing to do to take care of his mother. She's never been a burden to us. She's never interfered in our lives. But, now.......like I said, after enjoying our first taste of the glorious empty-nester life, we again, have another child in our house. And again, I really don't have much to complain about. She sleeps to noon, I make her oatmeal and coffee. She sits and watches tv until about 4 - take another nap-up to eat dinner around 6, back to bed around 8 or so. That's it. She doesn't want to do anything AT ALL. We've tried.
One of the things I liked about this site is that you don't have to feel guilty for saying what's really on your mind. You are not judged.
So, I'm just wanting to know what to look forward to. I'm not sure how long she's actually had this disease. Looking back, of course we saw signs. She's never been a deep thinker, mind you. She's pretty simple, and believes the last person who talks to her. (that's dangerous) And often stretched the truth to get her way. These are part of the causes of the stress in her relationships in her life, including her only child. Because of these traits, it has been hard to determine if a behavior she's exhibiting is due to the disease or these traits.
We have been blessed to still qualify for Home Health, but I know that will drop off eventually. A nurse comes by once a week and an aide bathes her twice a week. The first week she was here, she hallucinated a lot. People who were not here, things that we did not hear or see. That leveled out within that first two weeks - which I know was her own stress due to the change. But the hallucinations and confusion kind of ramped back up within another month, so she now takes Seroquel (a psychotic sedative) each evening and that has really helped. I've forgotten it twice and paid for that in odd things the next day. The biggest symptom is her weakness. She really has trouble walking, nearly falls almost all the time (we stay by her side ALL the time). She is partially incontinent. And believe it or not, SHE asked for Depends because "hun(she calls everyone hun), I just can't make it to the bathroom in time all the time". THAT was a nice surprise. She's always been in good health. She doesn't take meds for anything else.
Her diet has become very simple. She likes her oatmeal, coffee and a bagel EVERY SINGLE DAY. And does NOT like to miss it. And when she first got here, she'd eat most everything I'd cook. Now, it's whittled down to no matter what I cook or bring in, all she wants is cornbread and buttermilk now. She still has a heavy sweet tooth, though, and I usually have to have something sweet.
She does hurt feelings easily by mindlessly criticizing things, though, and I think that may be part what is starting to wear on us. We have found a couple of sitters and it allows us to go out a couple times a week. But our spontaneity to just run out together is gone.
We want her to have a comfortable, safe and peaceful end of her life here. We also are going to take care of us, too.
I have read that Vascular Dementia does not present like Alzheimer's. Now that I've laid myself bare - what can we expect?! Thanks for reading this book!!
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The MRI she got was quite harrowing. I'm still not sure why that was necessary.
I have sat outside with her on a nice day, but she doesn't derive much from it. She gets anxious and wants to return to her wing. I am finding that there doesn't seem to be anything that I can do to bring her joy, except for food.
I've asked her what she thinks about and she says she doesn't know; it's like the computer is on but it is in sleep mode or playing the screen saver (caught in a loop, lol).
There are two ladies in my cousin's Memory Care that are on Hospice. I see the workers there and see the resident's condition. One is a friend of our family's sister. She is completely contracted, very small and hardly ever has her eyes open. If so, she is staring blankly. I have no idea how she is alive. I'm not sure how the family handles it.
Cwillie,
It is indeed a mystery at times. Just when I think I know where she is, something will happen and I'm taken aback. I thought she was out of the repeating phase some time ago, as now she doesn't say much. But, the day we were recently in the E.R. with her fractured arm, she told me she loved one once every 2 minutes for the last 3 hours we were there! Of course,I have to respond with I love you back. So, I'm not sure what the people in the adjacent cubicle thought. lol
I can't say we ever have a normal conversation anymore. I do dread when her speech goes completely as I think she will be more frustrated. It's difficult to say what is going on inside.
Geriatrics doc and geri psych urged neurocog testing which showed she'd had a stroke and that her vog/reasoning skills were no longer intact. Ao when the "big" stroke happened, we knew what her skills had been prior.
Sunnygirl, I can relate to the total body unawareness in regards to incontinence and even pain (she knows something is wrong but can't tell me what or where), and the inability to feed herself without putting the food in her hands. She will sometimes ask for a drink while holding the cup in her hand and needs to be reminded that it is there.
As for her mind, some days we can actually still have a normal conversation, albeit a very short one. Other days she won't respond at all. This is all mixed in with her being nearly deaf and blind, so that must play a part too, it is hard to know sometimes.
She is still interested in hearing about the goings on of my kids and and she expresses concern if i say my husband has bronchitis, as he does now. She became agitated a few months ago about a dark spot that suddenly appeared on the side of her nose and did not stop saying "off" with emphasis, raising her finger and saying "i know" (she used to be a medical secretary to an oncologist and knows what melanoma looks like, plus she's had it before). We got it taken care of and it wasn't Melanoma, TG, but I was impressed with how she rallied her limited resources to " insist".
How can you tell if her humor is in intact? Does she still have expressions? Does she still comprehend what is going on or where she is?
Her memory has worsened since the stroke but her sense of humor is intact.
In the doctor office she responded that she was right handed, when she's not. I corrected her by saying that she was left handed since her arm fracture, but normally was right handed. I try to not point out her mistakes, just in case. I don't want to remind her she's wrong a lot.
She will try to say something in the doctor's office, when they ask how she is, but the words make no sense. Like, she'll say, "I like the way and that way and this one." This relates to nothing that has been said. We just stay positive and encourage her.
She does still have a good appetite. I have discovered that she has no idea of when her depends needs changing. I found this out in the E.R. with her arm fracture. It's just no sense of awareness. I don't think she looks well. Maybe, it's intuitive, because her blood work is good. It's just something about the way she looks. Do you know what I mean?
You described the eating problem very well - we had exactly that issue, too; and it was explained that the function that had been damaged was called initiation - the link in the chain from brain to motor skills that lets the message from the brain (I want my sandwich) get to the hand (pick it up, then). Isn't it *eerie*?
I'm so sorry to read about your cousin's steady decline. It must be very hard to watch. But oh thank goodness you took her doctor's advice: she is content and well cared-for, and you're able to visit her because you're not worn to a frazzle yourself.
I was looking forward to reading more about those with VaD. There are so many unknowns. I want to learn more from the experiences of others.
I wonder how long it was before your loved one with VaD could talk and then could not.
I was surprised to see how many cases there are around here, where years later the patient is walking, making a sandwich, etc. That doesn't sound like my cousin. She went downhill quick, thought there were signs over the years, but the big things hit quick.
My cousin was diagnosed app. 18 months ago and at the time, the doctor said she likely had it for at least 1 year. So, I think it must be at least 3 years. Her big decline occurred about 18 months ago though.
Since that time, she can't walk and is wheelchair bound. She is double incontinent, can't bathe, dress, or do anything for herself. She can't use her hands very much. She can transfer to and from her wheelchair with assistance, but getting into a car is a struggle.
She recently has difficulty picking up food to eat. I have to put it in her hands, then she can eat it. She has zero short term memory and even though she has a fractured arm, she forgets minutes after you tell her.
Recently, her language skills are declining. She doesn't talk much, but she did tell me that her arm was not going. I knew she meant that her arm was not working properly. I explained that it was fractured and had to stay in the sling to heal, and she was surprised, even though she had x-ray and MRI and has been told it's fractured 100 times. It's so sad. She will hold a doll, but she doesn't focus on anything for more than about 15 seconds.
I cared for her at first in her home, but due to me running my own business, I had her placed into Assisted Living at the urging of her doctor, then Secure Memory Care due to wandering needed a greater level of care. She is quite content, on Cymbalta and a nicer person than before the dementia.
She scored very low on the evaluations at the Primary and Neurologist and now....I don't think she would get anything on a test. She does still know her name and my name.
She has Type II Diabetes, Hypertension, Osteoprosis, and has multiple fractures over the years. some before the dementia. She has been on Disability for arthritis for app. 6 years.
aunt edna is so out there that she doesnt really care if i visit anymore and dont care how long i stay . ive even exited while she was in the bathroom .
its ok . we had a great time for a year and 1/2 and ive been fully aware that this was an eventuality . i still get a lovely hug from her but she is bout gone . her body is beautiful but she isnt at home . its disturbing ..
dont become too comfortable because things are going to get much freakier . MIL may decide youre the enemy at some point and all you can do is stay out of sight . dementia amounts to a brain death slightly before a mortal passing . people around her will be rocked to their limits .
But. It is caused by changes in the blood supply to the brain, and those don't happen on their own. Do you know what the underlying disease is? What other medication besides the Seroquel does your MIL take?
Your MIL's thoughtless and hurtful comments pop out because of a loss of inhibition. That means that a chunk of frontal lobe has gone.
The inertia and apathy: a) she's bone tired, possibly post-silent-stroke; b) she may be clinically depressed - again, because of effects in the brain.
There are two types of event that you need to know about:
1. TIA, standing for Transient Ischaemic Attack, commonly (but wrongly, and it's unhelpful) called "mini-stroke." The key defining characteristic of a TIA is that it is *temporary* - no longer than 24 hours in duration - a part of the brain loses blood supply and conks out, but the blood supply is spontaneously restored and the tissue recovers. Symptoms might include visual disturbance, fainting or falling, or suddenly talking nonsense, for example.
2. Stroke. These might be completely unnoticeable, or minor, or major. If I may say so gently, it is possible that she could have a fatal stroke; but the consolation is that if that happens when she's peacefully asleep in her own bed then it is something to be grateful for. In a stroke, part of the brain tissue dies and is lost forever. Any function controlled by that particular bit of brain is also lost - but see below, about "plasticity."
Essentially, the thing to do is imagine the brain as a bath sponge slowly drying out and never getting thoroughly rewetted. Little bits, invisibly tiny bits and every so often big bits start crumbling off, more or less at random.
But meanwhile, even in an 86 year old, the brain being the wonderful organ it is, it tries to repair itself. Where pathways have been blocked or have died off, the brain attempts to create new pathways and reroute commands so that sometimes, miraculously, abilities that you thought had gone forever do come back to a certain extent - this is called plasticity. Unfortunately in adults brain plasticity is comparatively poor and in older adults it's very weak; but all the same it's there, and it can be assisted by careful physical therapy and the right kind of activity - you hear great things about music, for example, and its positive effects on people with dementia.
But all of that maintenance and repair takes an enormous amount of energy - all the oxygen and blood glucose that the brain can get hold of. Hence the extreme fatigue you see in stroke patients - all of the body's resources are being diverted to healing the brain, leaving only the minimum supply for all the other organs.
Oh dear. I've certainly succeeded in depressing myself; let me try to look for an upside.
If you and your husband have jointly decided to care for your MIL for the rest of her days, then I can back you up from experience that it can be done. I am also very glad that the two of you are being practical and sensible, and that you're looking out for one another - you've made a great beginning to the task. If I were doing it all again, I would…
1. Keep my expectations of my mother's abilities and state of mind under constant review.
2. Be quicker to ask for not only support, but also training in specific aspects of personal care.
3. Realise that not every problem has a solution, and that trying to treat every symptom is likely to create other problems. Do not rush her to the ER at the drop of a hat unless you have a clear idea of what you expect them to do. And find a GP with a strong insight into later life care (we were lucky, there).
4. Sort out the money, and find out about all resources available locally - occupational therapy, home adaptations, all that kind of thing.
5. Schedule respite breaks - find a facility or nursing home that you're happy with, and book her in for a week at regular intervals. You will need the time off.
6. Keep more clearly in mind the things that really matter on the scale of things, and worry less about comparative trivialities like whether there's enough fibre in her diet, or is she taking enough exercise. Make her safe, comfortable and as happy as possible - everything else is optional.
And, of course, I wish I'd known about AC before I stumbled on it - thank God -when I was at a serious low point. Welcome to the community! - and please come back to let us know how you're getting on.
I moved in with my parents in 2009. My father died in 2012 (mixed dementia and other problems), leaving me with my very controlling and child-like mother. Life has not been easy. She is dependent on me for almost everything, but has to feel that she is in charge. It can be crazy making.
I don't know if you can put stages and a timeline on VaD. My mother is like a very slow Energizer Bunny. Her back is bent and her gait is slow and unsteady. To see her you would think it was her last week on earth. It has been like this for years now. She has declined, but she keeps going. She follows the same routine each day. She makes her own breakfast, then goes back to bed on the couch, waking up to get the same lunch each day. Then she watches TV until dinner. Then she watches TV after dinner. Then she goes to her bedroom and sits on the side of the bed for a while. Finally she goes to bed, but gets up in the middle of the night to go to the living room to get on the couch. It is where I find her the next morning.
This is her day and it occupies and dominates the whole house. I'm a bit like the quiet domestic servant who keeps things semi-clean and the pantry full. I realize that this could go on for years or it could end tomorrow. The end-point of VaD is often heart attack, stroke, or a fall. My mother's heart is strong, so it will probably be the latter two. It is like waiting for catastrophe.
Gosh, there is so much that I could write a book. I'm glad you're in the group. What you're going through with your MIL sounds so similar to my day. It may be that way for many people caring for someone with VaD.
She also has type 2 diabetes so someone has to check her blood sugar before every meal and supervise her giving her insulin shots. Medicaid is supposed to start sending an additional aide for evening insulin and housekeeping starting next week. So that's good.
I am seeing that she is getting worse much faster than we expected. I'm guessing that's due to it being vascular. I've read that vascular dementia progresses much more quickly than AZ and usually reaches the final stage within 3 to 5 years. We only began this journey in May 2015 so I have no idea how long MIL has left but I know it will not be easy.
I hope you didn't give up on the group yet and that you're still around. Maybe we could help each other through the hard days ahead.