I stumbled here in my research about my MIL's dementia. I've been lurking in an attempt to gather info and make more sense of what is happening. Searching out people in similar situations.
I'm not sure what specific questions I have at this point. There is a lot of information that I just do not know.
She is still rather young, in her early 70's. I've always found her to be an ODD sort of person since since I've known her. At first I thought it was a language barrier between us. She is Hungarian and I just assumed it was the accent coupled with basically a different way of thinking. As the years passed, I began to feel that something was wrong. However my hubby and his dad didn't appear to notice much if anything at all. She's always been this way and they were often irritated with her behavior. Fast forward a few years and she was diagnosed this summer with Front Tempera Lobe Dementia.
It's a terrible disease for her and for the family. You are all fully aware of that I realize. I think something that haunts me terribly is that she was a doctor during her working years. An ER doctor and a doctor that doctored her patients and made decisions that were best for them. She was not concerned with the "business of medicine." She often did battle with the higher ups on what she felt was right and what was wrong. Often getting into big trouble for standing up for people.
So here we have this woman, a genius. She has been published in medical journals for her innovative methods. Like using a person's own hair to as stitches in a time when such things were not available. This was back in the 50's during the revolution. She was a medic back then.
But anyway, I sit here now and think about what it is that she is feeling? Here is this woman with an amazing mind and now it is letting her down. How horrible and cruel it must be for her to be trapped within her own mind. And yet, I really don't know for certain that she knows at all what is going on. I think she thinks there is nothing wrong with her and it's Dad that has the problem?
As of last week, she has started to see things that are not there. I don't know what level she is really at. The incontinence started some time ago and that wears dad out. There is an attendant that comes daily for an hour a day. She's a difficult patient and lately I see her becoming somewhat testy.
I suspect she is deeply depressed. She is in bed more than out of it. Getting dressed can take hours if she ever does at all. She is supposed to go to the day program at the nursing home 4 days a week. However dad starts at 8:00 am to get her ready and by 1:00 pm he generally gives up.
They've not had a close loving relationship for the past 50 years. It is so sad to watch the result of that now. She refuses to let him nurse her. He is uncomfortable going there. One for fear of being shouted at and two he seems to feel he's invading her personal privacy. Sigh.....it's frustrating and so sad.
I make meals about 3 times a week and we have dinner with them on those nights. We are there each weekend to help out, mainly to give dad a break and let him vent his frustrations. Mom unfortunately did not take care of her power of attorney. So hubby and dad are in the process of getting that sorted out. Once that matter has been dealt with, I suspect she'll move to a nursing home.
Wow, that was quite the lengthy introduction now wasn't it. Thanks for listening. Guess I just needed to get this out.
Hi Bendy, good to have you here. You will find moral support above all else, and some help in making decisions. The technical stuff about the disease can be found elsewhere. The most amazing thing to me as I have been coming here for almost 5 years is that dementia caregivers are a very special sort of person. Never thinking of themselves, they slog on day after terrible day, trying their best to help the victim, whether it's a husband, parent, sibling or grandparent.
Another thing you will find is that getting your loved one into professional care is a good thing, not a terrible punishment for them.
As a doctor, your MIL knows that she will be fine in a good modern nursing hme. As her memory slips (and it seems to me that it happens often to highly educated, brilliant people) a good NH will prove to be the best place for her, with round the clock care and professional staff.
But first the patient and families go thorugh a kind of denial ... when they try to convince themselves and each other that this case is not really so bad, actually so and so is worse, and look at that, she can do this today after not being able to yesterday. Yet, even with occasional ups and downs, the path leads inevitably to complete helplessness.
When it gets too much for you and you need to shout or cry, here is the place. We listen, we understand. My Mom died in December 07, and many others who still come here have lost their loved one. But the majority are right now in the middle of the coflicts and decisions. We all try to help each other.
Welcome, Bendy...I'm so sorry you had to find us, but welcome! I lost my mother 3 weeks ago...we don't know what type of dementia she had because she refused to go to the doctor....but she was the 'mean' type, often yelling and cursing at dad and I....so I totally understand your FIL's reluctance. My mother never got dressed for that last year of her life...she just stayed in her nightgown and robe all day....and on the rare occassion that we did go anywhere, it was such a struggle to get her dressed.
Mom was also seeing things that were not there....several times I heard her having full conversations with someone, and she was alone in the room... maybe she was seeing her loved ones who had already gone. In the last few months, she started thinking that her dog was an actual baby...she'd often say that she needed to get a bottle to nurse her, or that she needed to get her nightgown on to her.
It's good that your FIL and hubby are getting affairs in order. Mom and Dad had done a living trust years ago....after the memorial service for mom, dad asked one of mom's nephews a question regarding refinancing the house to lower the interest rate....my cousin is a real estate appraiser.... dad told him about the living trust, and cousin told him to have it looked over before doing anything to make sure it's up to date. THANK GOD he did, because dad took it in to a trust lawyer, and it turns out that several things in the trust would not hold up because there were several pages where initials were missing, and the house was not even in the trust! So dad had him make up a new one and signed it yesterday. EVERYONE...make sure your paperwork is still up to date, and has everything in order!
I'm sorry you have to be here, Bendy....but you will receive a ton of support here!
Welcome to the board. I lost my mother to this horrid disease a year ago. My father died 5 weeks before Mom from an anuerism, but he also had vascular dementia. So I have seen how that affected my father also. It is a bleak and horrid life.
Your MIL may be reaching the point that she is forgetting what she knew what she did. She is perhaps slipping into a previous portion of her lifetime. How is her short term memory? That is the first to go with this disease. And you will find that out fast if you haven't already. I am sorry that she isn't one of the "happy" people with the disease. It seems that they either are good natured about it or they tend to get rather mean spirited about it. Perhaps your MIL would do better if she had an antidepressant. It isn't uncommon for AZ patients to be depressed-after all think of what they know they are going through! You will find if you put her on it that her attitude would improve and that she would be a more pleasant person to be around. It might be a blessing for your FIL also.
Your hubby and your FIL do need to make sure that they get both a durable and medical POA for your MIL. Also your hubby should be put on his parents bank accounts so that if anything happens he would be able to pay the bills and take over for them. It's a terrible thing to talk about, but it's something that we have seen happen over and over so we stress it to new comers in hopes that they can avoid a tragedy.
You are certainly facing an uphill battle with your MIL. I applaud you for your empathy to her, but you realise that she isn't going to be an easy patient to work with. Have you considered having help come in to work with her so that your FIL can have a break during the week? That might releave the burden on him some.
You are welcome here at any time. It's a scary place that you have entered, Planet Alzheimer, we will help guide you through the rocky paths the best we can.....
Nothing fun about dealing with a FTD/Pick's patient. My wife (53) has this. Thankfully, she is now in a nursing home. She was the exact opposite of what you are dealing with. She has lost all ability to talk and there is very little interaction at all.
If your family plans to use Medicaid to pay for the nursing home, you really need an Elder Attorney's advice. The way the laws are written, there may be some ways around Medicaid requiring so much in assets.
Also, durable power of attorney is a must.
Lastly, don't let being a caregiver take your life over. The stress can be incredible. And try to find a local support group. You'd be amazed at how good it is to be with people who understand.
Glad to see you back here. You haven't posted in awhile
sorry that the disease is so horrible for everyone, your MIL and the rest of the family. Please don't try to overthink this too much. we all don't know if the person is 'trapped' in their mind and unable to let us know.
My Mother has been on the 15 year road of this horrible disease, functioning the longest with her long-term memory as the short-term got impacted. Due to the fact that we've lived in the same house, same town, for 50+ years helped her stay viable for a lot longer than some.
My Sister lost her job in November 2000 and went back to the company as a consultant, losing it again in September 11, 2001. By that time, Mother started having panic attacks each time she left the house so I suggested that sister get a night job and I'd be there at night -- that only worked for about 8 months after which she lost that job.
Once that happened and she became depressed with the job market, she started saying how Mom was making it difficult for her to go out of the house, etc., and Sister was adament not to have anyone in the house until we would find all the stuff my mother hid over time, is ended up being that they were able to live decently on what they had and what I could give them. Unfortunately I knew and struggled with the fact that this wouldn't be healthy for my sister, but everytime I suggested she look for work, she had a 'valid?" reason for not. So 8 years has now gone by, but my mother was able to be home for a lot longer than some.
She fell (that's the end stage of the disease, they fall alot) -- anyway and then I noticed that she wasn't eating easily the last few months. Sister said it was the medicine and it was making Mother lazy, she could eat she just doesn't want to. but to me it was evident she was unable to eat (another part of the end of the disasese). She fell, went to hospital, transferred to NH and is now on the end road. Thank God, we:
both have POA and MPOA. Thank God we both had everything in an irrevocable trust and thankfully Mother also had a living will.
Because my sister is sometimes unable to make the necessary decision and the nurses told her don't worry about it, your mother made the decision for you and they involked the living will which is nothing done to prolong life or delay death. Its a horrible disease. I can't even go see her its so bad. I just want God to take her. Its been so very long and everyone's life is in limbo and on standby. We treat animals better at their end of life than we do humans and its a shame.
My prayers are with you. Please keep writing, we are her to support you. Its a long road and I agree with KENBOB, your family doesn't have to be the only caregiver. There are others who chose this as their career.