Will she forget & have to be told again? Her doctor just told me 6 days ago about her limited life. Hospice will begin in a couple of weeks, and I know I could ask them for advice, but I didn't want to wait.
She is in assisted living, and has been for almost 5 years, but learning her lungs are compromised probably explains her early morning confusion and disorientation. I often get phone calls from her around 8 or 9 a.m. asking me, "Where am I? Why am I here? Who put me here? I patiently answer all her questions and tell her I'll come see her that afternoon. By the time I get there, she's just fine and doesn't remember that she was upset. So I say all this to explain that she is pretty aware (if she gets enough oxygen). For Thanksgiving all my children and grandchildren are coming. My 2 brothers and their families are coming. There will be 35 people including babies. We've rented cottages at a 'primitive resort', so there will be a way for Mom to get some peace and quiet if she needs. As I write this, I've convinced myself I should tell her before, because this will be the last Thanksgiving we spend with her, but it may also be the last time she gets to be with some of the family, who may not be able to make it back when 'the time comes'. I think she needs the chance to process this, but she'll probably forget and I'll have to tell her again. Or do you think it will be one of those shocking announcements that will stick in her mind and she will obsess about it? As her daughter, I have MPOA and am the only relative in town, 1 brother is 2 hours away, other brother is a 2 days drive. Thankfully, as her children, early on, we made a pact that we wouldn't make any decisions concerning Mom about which we were not unanimous. That decision alone has saved us so much grief. So despite the fact that most of her care and contact has been in my court, I appreciate my brothers very much. I'm sorry to be rambling, but I thank you now for responding to my questions.
1. Do you think I will have to tell her again about her short time? How often? Or do you think she will obsess about it and maybe become depressed?
2. Do you have any suggestions on how I should tell her?
3. Is there a time of day that would be better than another time of day to tell her?
The nurse pointed out that they wanted to get to know her now before she actually needed them to do anything for her. This was validating to mthr, truthful, and gave mthr the feeling she was still in control. Now 2 mos later, she complains about the aide who gets her up in the morning and washes her groin, but it's mainly about having to get up. I joked that it's a make-work program serving super seniors I tried to keep her hidden from, but they found her anyway! She laughed and laughed. I have no idea if she thought I was telling her the truth. But the complaints stopped - corresponding to a change in her anxiety meds.
Mthr's dementia is complicated by cancer spreading as well, and nurse told me it could be longer than 6 mos. Hospice is managing her meds, incontinence supply, fall pad, hospital bed, and aides. A true blessing!
Why tell her and why have the chemo? You have to just use what feels right for your circumstances.
It would be a lovely tribute to your mother---as I presume that she will be the oldest person at the family reunion---to offer a toast with gratitude for all she has given you, compliments on how she lived to such a venerable age and what is her secret to a long life? Her dementia notwithstanding, she may have some pearls of wisdom or humor to share or memories of a time long gone. Our culture is so dismissive of what our elders have to teach us, but this may be your family's opportunity to express how much they value your mother's wisdom and experience.
Best of luck with your plans, and remember to take some time out for yourself!
As her condition worsens closer to the end, there will be time to talk about it, maybe she won't even realize and that will be a blessing.
In my mind it isn't woth the angst it may cause her. Often dementia or ALZ sufferes get hung up on an issue or something said and play it over and over in the minds and dwell on it...you don't want that for her.
wisdom learned from this 'trial by fire'. Thank you all for taking the time to write me and help me be able to gain so many perspectives in such a short time.
And they are all valid! Both my brothers have now said they trust my judgment. I would that I felt such confidence in myself! I really think JessieBelle said it best that I will feel when the time is right, that a door will open and talking will fit and be kind. Until then, I think I will just enjoy my time with her, answer questions as they come, not trying to 'borrow trouble from tomorrow' and giving thanks in all things. God Bless You All!
I don't know if you had told the other family members what is happening regarding your Mom's health, if you hadn't then I would wait until after the holidays... you don't want to have someone accidently slip up and say something that your Mom would over hear, or a child say something to your Mom [kids will say the darnest things at the most inappropriate times].
It is wonderful that the family is gathering to see her and celebrate with her, and you've arranged their stay very well. I see how important the day will be. But does she need to have it acknowledged that (almost certainly, as you realise, and I'm sorry for it) this will be her last Thanksgiving? Wouldn't that potentially detract from everyone's enjoyment of the holiday?
My father had an assortment of things wrong with him, including mixed dementia. I don't know if it is true of everyone, but he knew that he was going to die about 2 months before he did. I guess that he felt the changes in his body and knew the time was near. Your mother may also sense that her time is drawing near. Hospice will help you know what is going on. I like that they are not afraid of relieving pain, because the cancers may begin to create much discomfort. You were so wise to get them on board to help. They will make things so much easier.
If there comes a time to talk about things I am sure that you will feel it. Those times are like someone opened a door to saying something. Talking will fit and will be kind. Those are golden moments. Many times we have to follow our instincts about what is good or bad. I know the months ahead are going to be difficult. Glad you have family and hospice with you.
The other thing I'd advise from personal experience is get mom LOTS and LOTS of rest away from the hubbub of 35 people. My mom gets worn out very quickly, so she can take about an hour of being around people, then she's got to get away to some more quiet. So put mom first and foremost and let the rest of the family work around her abilities for visiting. Have fun and enjoy yourselves!
If her dementia is not as advanced as you suspect, then she may start asking why if she only has 6 months left, can't she go and stay in the homes of her family for that length of time. You would then have to explain why that's not possible and risk her feeling rejected as she is told she is terminally ill. I would anticipate all the scenerios before I gave her that news. Plus, it could be incorrect news.
I wondered a couple of other things -- will the big family gathering be difficult for her? And a big one -- why do you feel you need to tell her the end is near? And why would you tell her again and again if she didn't remember? That sounds cruel.
People with dementia can't really be expected to face our realities. As many of us know, their realities can become what is in their own mind. There is no need usually to shift them over to the "true" reality. Will it really help your mother if she knows death is near? If she already has her affairs in order, there may not be much point in it. In my thinking, the best thing would be to have the other people around her make sure they are making her last days good as possible. I would let the family know that Mom's time could be drawing close so they can do the things they need to.
If your mother has dementia, it may be what is causing the early morning confusion. Morning is the worst time for my mother. I (and others) call it sun-upping or sunrising. It is like sundowning, but happens when they wake up. What you described for your mother sounds so much like mine, so maybe it isn't an oxygen thing. My mother's O2 is always good.
One thing to consider is that doctors often miss when giving the prognosis of a disease. Sometimes they give 6 months and the person may die the next week or live for another two years. We can never be sure. We just have to let Nature take its course.
It is wonderful that there will be a large family gathering in time for her to enjoy family and family to enjoy her. Will any of them know that your mum's days are short? That could bring complications.
I guess I am wondering why you feel you must tell her, as you are aware she will have some trouble processing that information due to Alz. Has she ever - in past years when she was better - expressed anything about wanting or not wanting to know. What do your siblings think about telling her? You are very fortunate that you can communicate so well with them over your mother's needs.
Personally I would be hesitant considering that your mum has Alz. I don't know if she knows yet, but she may well become aware that her life is drawing to a close as her lung condition worsens. If she asks, I would definitely tell her. Otherwise I would wait and see how much awareness she has as her disease progresses. If you are concerned that she will perceive that bringing in hospice means her end is nearing, you could introduce them as more care due to her condition which is true, or something like that.
My heart goes out to you. As many here know, watching the ending of a life of a loved one often is a very difficult and traumatic process. Make sure to look after you! (((((((hugs)))))