In the middle of the night wife decided to go to the bathroom, got out of her lounge chair, which is where she sleeps, came back instead of holding onto her rollator she pushed it away turned around fell and hit the table next to her chair. When I awoke I came in to check on her and found her in a lot of pain and blood on a towel under her arm. I checker her and bandaged her arm. I have had many conversations with her about safety, calling me with the button I installed next to my bed, I know she doesn't want to be a burden however I am getting more discouraged every day, it is like she never gets a break with her health, I can't even touch her without having her say that hurts. It breaks my heart to see such a strong individual struggling to get by each day. Sorry, but I needed to vent.
Just know that with dementia the brain is broken and no matter how many times you say the same thing it will not get to the reasoning part of the brain. I told my daddy not to do this, not to do that and he did it anyway. Just take it one incident at a time.
Hospice is your answer - they will assess your wife and give you the assistance you need. Remember this - Hospice does not equal death! It equals help. Use them and do not go with the first one check them out ask them what kind of services they will assist you with and the most important is - what kind of services they will give you when end of life does come - will they be there 24/7? will they administer the comfort drugs or will you need to do it?
Other questions - what supplies will they GIVE you? do they have a 24 hour call line? will they send a care giver to give a bath? respite care for a few hours at a time? prescriptions?
I had hospice for my daddy - they were great 24/7 care at end of life - they took care of everything even notifying the mortuary. My sisters hospice care sucked - I had to do everything for end of life including notifying the mortuary.
Know that as I close this note I have said a prayer for you and your situation and sending you some cyber hugs (())!
One time when I was at one, a man was there who had ALZs. The person taking care of him kept coming up with excuses not to pick him up. The hospital arranged for a ride and he was discharged.
And, what if when Hospice aids came, the person resists help with bathing, grooming, etc. Even if my dad did qualify for Hospice, he’d likely resist care from anyone who comes into the home. We have home health aid coming now who he refuses to allow to help him.
When he went on Hospice, home health had to stop.
You don't have to have the aid if your Dad will not accept the help. He can just get the nursing services. There is also chaplain services and I believe Respite services for you.
There are alarm pads that hospitals use that go off when the person gets up off the pad. Maybe you could purchase that from Amazon. Or from a medical supply store.
Could you possibly move her recliner into the bedroom so you can more easily hear when she gets up?
Let us know.
Could you rig her lounge chair (or bed) up with an alarm similar to what they have in hospitals so that if she gets up the alarm goes off to warn you? Though it might cause a lot of false alarms, disrupting both your sleep, and you might not get to her in time anyway. Or I think there are alarm mats you could put beside the bed so as soon as her feet hit the ground it goes off? That might have the same issues though.
Bedside commodes would be offered by hospice, but she may not remember /understand to use it (my father didn’t).
Could you get some kind of aging advisor review of your home? Or hospice review would be good. The only other thing I can think of is hiring an overnight aide to sit by her. But even that didn’t 100% prevent falls when my dad was near the end. My dad’s last 3-4 days were spent in a hospice facility for the very reason that he kept falling at home no matter what we did. In the facility, they put him on an air mattress on the floor with big bolsters on either side and they were alarmed. So the only way he could get out of bed was crawling (less likely to hurt himself) and even then, the alarm went off when he tried.
I am so sorry.
You mentioned that you needed information on hospice. What kind of information would be useful i addition to that already presented? I am not expert in this area, so another reader may answer your questions better than I could!
Mum constantly complained of back pain when in her recliner, and she became so bowed sitting there day in, day out. Then, on her first hospital visit last year, I was surprised at how long she sat in the big, straight backed hospital chair, without a murmur of complaint. It had a special cushion to prevent sores; otherwise it was just like the chairs you find in any elder care lounge. It was the same on each subsequent hospital stay, until she became too weak to get out of bed.
When Mum was placed on palliative care (similar to hospice in the US, I think) it was such a relief to everyone, including Mum, when the morphine dose got to the right level to properly ease her pain.
I wish the OP and his wife release from this pain and for their hearts to be at peace.
You do not need a doctor’s order to have a hospice evaluation done, and they will determine if she is eligible(research local hospices first). I think you might need an order for a palliative evaluation but if you had hospice come first, they would help you with that as their agency might be the one to provide both services. Hope that makes sense.
It’s a very difficult position to be in, but I found palliative care invaluable in supporting my husband and I during his last five or six months.
Thanks
You can call your local Hospice agency in your community and ask them to send out a person to do a free intake assessment at your home. If your wife qualifies for Hospice, they will contact her doctor and get an order. A nurse will come out at least once weekly to take vitals and address any concerns. An aid can come out 2 or 3 times weekly to give her a bath, hair wash and diaper change. If your wife has health issues after hours, an on call nurse is available to come out and address them. A Hospice doctor works with the nurse to order comfort care meds to address pain, etc.
It's been an absolutely wonderful service for my husband.
Clearly wife cannot remember, or thinks she is safe without you. And whoops, wrong again.
If you are close to her in age you know enough to know this is more a brain-balance thing than anything else.
Sadly, falls are catastrophic inevitably and sometimes the beginning of the end. At 82, now with the balance of a feather in the strong winds I know that one of these times when I cannot catch myself on tripping on the cracked sidewalks, it will be the hip going. It's knowing it but also knowing there's little to be done about it, that that's where you're at. You cannot be attached to her at the hip. You can only hope that, like me, she continues to bounce with only a few bruises--(and for me a click in the left shoulder.)
She probably does not "remember" about the button that she needs to push to get your help.
There are alarms that you can get that if she steps on it it will alert you that she is getting up.
There are some that you could place on her chair but they may go off if she changes position.
There is the possibility that she could begin using disposable pull up incontinent underwear so that she does not have to get up to go to the bathroom. Even with incontinent underwear I would still use a disposable or washable absorbent pad on the furniture.
Vent all you like.. there are plenty of reasons to do so.
Even with dementia and severe COPD, my mum still wouldn't allow herself to deliberately wet the incontinence pull ups or pads. Right up until her last days, until she was no longer drinking enough to need the commode, Mum would insist on getting out of bed, supported by two carers, or me and my daughter. She became too agitated otherwise.
I had no idea that Mum would cling onto that last piece of dignity, when she was so ill and barely present. But she did and we helped her to do so, even though she was so very weak.
However, that was a different situation: Mum was actively dying and preserving her life or health wasn't an option, let alone a desirable goal. I'm not sure how we could have reasoned with her if the situation had been otherwise.