The FastDay Forum

Thank you so much @wendyjane for thinking of me too.
Dementia is a terrible terrible disease and you are correct, saying that this way of life, could indeed save us from the same fate as our relatives. I had not thought of it that way. But as you have now mentioned it, I will maybe push myself to get back on track. I have lost a bit (of weight, but probably the plot too), by using my exercise bike for an hour a day, but now I am back working, (The wrist DID finally mend- of a sorts, no physio here) I can see the bike not happening every day.
Thank you so much for giving me the push I needed and hopefully, you will see me on here more often again. It hasn't helped that the internet went down for a week and my laptop seems to 'fall out' with the router periodically and they 'lose' each other.
Technology, you have to love it.

I hope all carers and families are well, the tent has been quiet.
It is touch and go everyday for my 95 yr old Dad, as one can expect. Suspected blood clot this eve. Tomorrow is another day .....it's amazing how he get's through anything put his in his path, but one day ...
Day by day, best wishes to all.

@lizbean. Thanks for bumping this thread. I had forgotten we had it. Hope you get to spend as much time as you can with your father and that he continues to tackles the challenges he faces.

Lizbean wrote: I hope all carers and families are well, the tent has been quiet.
It is touch and go everyday for my 95 yr old Dad, as one can expect. Suspected blood clot this eve. Tomorrow is another day .....it's amazing how he get's through anything put his in his path, but one day ...
Day by day, best wishes to all.

Yes Liz, day by day is the only way sometimes! Also pleased to see this thread again. Does your dad live nearby or far away? My parents live 2 hrs away, but I wish they were closer and I could be on hand more quickly when needed. Twice in the last month, so I know just what you mean when you say 'day by day'

I am back. Had our best Christmas in years. Ka had no seizures, infections, colds etc so very relaxed
Big hugs lizbean x

@Rawkaren@Silverdarling@Karenm
Thank you. Yes, this wonderful thread is here! I'm 3 hours from my Dad. He is now undergoing warfarin treatment.
@justdee - look who is here! Karen! where have you been you naughty rascal? Glad to hear you had a fab Christmas and Ka is very well.
Are you staying for a while?
Day by day is a good way to be - I can't do it any other way.

@Silverdarling much against my mother's wishes carers are now visiting every weekday 8am to noon. They are two great wise women, former lectures etc. It gives us a peace of mind that every morning someone is there helping with the daily routine. It is a national agency so if you would like details for future reference pm me. I hope your parents are well today.

Hugs @lizbean and thanks for shouting me in to say hi to my buddy. Thought we'd lost you forever there @karenm, very happy to see you back and to hear you all had a great xmas and Ka is well . I've packed on the lbs over the last month. I think you're on the right track regarding the tracker, we tried to keep them as a long term record last year and sad to say didn't get very far. I'm going to go for it and reset mine too, it's got to be better for motivation. Good luck, I hope to see you here more

@Lizbean - thanks for your considerate reply, and offer. My dad already has carers visiting 4 times a day - an hour to get him up and put him to bed, along with two shorter visits at lunchtime and 4pm. He needs to be hoisted out of bed and into his chair, and has complex care needs. My mum at 81 is his main carer, managing all his medications (she was an SRN) and the twice weekly visits from the District Nurses, (sometimes more often, and sometimes visits by the night team if required) Not to mention the constant washing, meal preparing and feeding him by hand, which can often take a long time, as his brain function is now so impaired that it can take a long time for him to respond to gentle instructions. I try and get down when I can to give a bit of support, but it is very hard going on my mum as you can imagine, and I do have concerns about how things are going to go with both of them in both the short and long term. Am sure this sort of routine is familiar in one way or another to very many people here, so it is good to have a place to share our concerns and support each other

@silverdarling thank you, it has been a busy week indeed, as I am very sure yours has been too. I hope your dad is comfortable today and your Mum is resting. You are well ahead of me in providing care and medical care at home and your description of the care your father receives helps me see ahead. It is a great privilege to be able to keep our parents in their home environment as long as possible. It's also a huge ask and tug on the heart when we are many miles away. I found it easier when I realised I was able to give my self permission to drop my life at anytime to be with them in an emergency. I can jump on the first train or hire a car.
You mention concerns about how things are going to go with both of them in both the short and long term. That is another step as things constantly change short term and we also need to be prepared to act for and support them in the future. I seem to try think through all the possible scenarios so I'm prepared. For me the most important thing is to 'keep them together' either at home as long as possible or in a nursing home should that be best.
Throughout my life my father has been meticulous about detail, plans, finances and how to love dearly. However we find he has no funeral plan or written wishes, nor does Mum. That has really, really, really surprised me! Perhaps I should not be surprised. They are leaving their moment to us - for us to celebrate and love them. So, I have spent this evening researching and planning to be able to have a conversation with my siblings.

I understand your concern on the strain posed on your Mum. Does she get out and about, meet friends regularly and have interests? My Mum is almost blind through macular degeneration. She still runs the family home, she is a wonderful.

Update on my Dad, his spirits are high - he is visiting the hospital daily for injections to reduce the large blood clot (they normally admit you for this procedure - but at 95 you get get your say and rights!) and monitoring of warfarin meds - it is the first time he has been out of the house since June, it is winter and he is a happy bean, so that is good.
Day by day
It's good to talk - everyone is welcome.

I'm not a caregiver myself, but OH and I are approaching the age when we may need assistance. We have had many conversations about our futures with each other and some with our children--who would really rather not have to talk about it.

We have made our wills, signed living wills, appointed health care proxies, prepaid our funerals, and assembled an exit kit a la Derek Humphrey's "Final Exit" http://www.amazon.com/Final-Exit-Practi ... rd+edition and had a professional writer do our obits that are now on file with the funeral home. Seems like a lot, but there's still a lot we haven't done, we think.

May I recommend the new book "Being mortal" by Atul Gawande? http://www.amazon.com/Being-Mortal-Medi ... ul+gawande This has helped us a great deal to clarify our thoughts and help us reach decisions. We just finished reading it and still have a ways to go in our discussions.

@Lizbean @SilverDarling and all here, I have such great admiration for all of you who are going through this from the other side.

@Lizbean - well I have given myself permission to drop everything to be with my parents when needed (most recently my Mum's hospital admission at short notice) - however, my employers are not so sympathetic, making me use my annual leave and refusing my application for unpaid leave. So I am now in the position of having used up half my leave, a quarter of the way through my leave year. Yet another problem to be faced and overcome, one way or another.
My mum gets sitters a couple of times a week, enabling her to go out shopping etc, but not much time for friends - these tend to melt away at times like these. Her friends now are the carers she sees on a daily basis and one sitter especially. Horizons inevitably narrow in situations like this, and I do worry about the sudden change in her life after my Dad finally dies, as it will be a very sudden change in more ways than one. I do get to take her away for a few days respite care every few months, but the last time the care my father received was less than acceptable, which reversed all the effect of going away for a break in the first place.
One thing about going through all this - it does make you focus quite carefully on what matters. People do talk about 'living in the moment' but frankly they usually have a choice! My mum doesn't, and actually I have found myself living much more from day to day, although I do plan for the future, like you do.

Oh NO @Silverdarling well I'm pretty darn useless, apologies! I drafted my response and left it in my DRAFT box. I'm kneeling on one knee for your ..... and life is flying by ... and yep I'm skidding on my pants too as I'm sure you are
Hi @LadanTrying - bumping up for you please keep in touch.

I started this thread talking about my mom. See the very first entry if you haven't yet. Reading back, my entries have practically been a journal, tho I have never been a journal-keeping person. So it seems appropriate now to report the final chapter.
My mom had been here in Colorado since July, '14. She was doing relatively well, at least still knowing who we all were and enjoying our visits. In November she went very suddenly downhill, not being willing to try walking with her walker anymore, not having much reaction when we talked to her. Fortunately in early December my brother and niece came for a visit. She was still alert enough to appreciate their presence, and we all - 9 of us - had dinner together in the independent living dining room. In mid-December she started having trouble swallowing and on December 18, choked on the pureed food they had started giving her. At the hospital, they first diagnosed pneumonia, presumably from aspirated food. Then the doc decided to do a CT scan to figure out why her belly was so distended. The breast cancer that we had decided not to treat a year ago, which we had been told was a very slow growing type, had metastasized to her liver. We moved her to hospice where she spent 5 days sleeping comfortably with the aid of morphine, and she died on Christmas morning. We had all been there Christmas eve, and my brother, who arrived here two days earlier, had spent the evening talking to her and playing music on her beloved recorder (she was a music teacher and semi-professional player). I hope that you can appreciate our family's feeling that this was a blessing, because no one - least of all Lori herself - wanted her to spend five or 10 more years with Alzheimer's. So although it's sad that she's gone, I personally have this idea that she took action in the only way she could, and on some deep unconscious level decided to let go, and then managed to do so. Lori was a huge fan of holidays (Halloween was her favorite!), and I think she would have really appreciated the fact that after going over to the hospice to say our goodbyes, we gathered back at our house for a nice Christmas celebration.

Thanks, @Lizbean, you're so kind to point me in this direction. From reading some of the posts, many of you are doing a lovely job caring..how wonderful you are.