Starting up Hospice care at home for my probable end stage dementia mom

Adam1216

Hi all. My mom is 91, as mentioned. We brought her home from  the memory unit at commercial assisted living facility. She had been there three years, at first truly enjoying the activities geared to people like her. She was the highest functioning one in the unit. Always picked when no one else knew the song title , or actors name. 

Unfortunately, she could be unsympathetic to the other residents, making fun of their mental anguish.

Fast forward 3 years later. She physically survived  Covid but , confined to her room 24/ 7, her brain continued its inevitable decline. When we took her home at the end of March, care had degraded, and so had her mental acuity. 

We sold our small restaurant, brought mom home, and have been her soul caregivers for about 3 and a half months.

Been a wild ride. Now we are ready for some help in physically changing her ‘Depends’, and some advice.

If anybody has any relatable experience/advice about this next/ phase of her life.

Thanks for reading.

MN Chickadee

My mother also survived covid but between the long term toll on the body and the quarantine/change in routine she withered and passed away shortly after "recovering."  She was in a memory care facility, but hospice is the same and serves people wherever they are, they came in at the end. Hospice staff don't do a ton for the hands on care like changing depends. The nurse comes weekly at first, and that increases as a person gets closer to death but they don't stay all day or anything. They may come daily but it's a check in and assessment, tweak meds and stuff and then they are off to the next client. They are on call so you can always call with questions and they can come back out if needed like if your mother's condition changes, but it's not like they are there for daily caregiving.  A bath aide will come do bathing once or twice a week which may give you some relief from that. Different agencies have different staff, but they likely will also send a social worker and chaplain a few times. It remains on the normal caregivers (either facility staff or the family if the person is at home) to do the day to day care such as Depends, giving medications, turning to avoid bed sores, administering any food or drink the person can take in. My mom slowed down on eating and swallowing. For a little while was just taking in some Ensure, then barely water. If they are still taking in even small amounts of nutrition and water they can go a while. It doesn't take many calories to keep on going when they aren't moving around.  Once my mother stopped taking anything in it was about 3 days until she passed. 

Some hospice agencies offer various forms of respite care to give families a break which may interest you. Some areas have in-patient hospice facilities. Some families use them for respite, to get some days off and recharge their batteries before the final push to the end. 

It's hard to know how long someone has. Is she eating? Even the hospice nurses have a hard time estimating.  At one point they told me 4-6 weeks for my mom, the next day that turned into 1-2 weeks, the next day they said a week. She passed within 48 hours after that.  She had stopped opening her eyes or showing any sign of being present, and slowly the normal signs of active dying started to set in. It was peaceful. Hospice prescribed plenty of morphine to keep her comfortable, because you can tell without it they are in pain. They are extremely delicate at that stage. We played soft music, kept the lights dim, set up a peaceful space. We spoke to her, we gently held her hands. We said what was in our heart. And it was excruciating, the waiting for it. The gurgling sounds and labored breathing were relentless. Time seemed to stand still and it seemed to last forever. And all of a sudden it was over. Which was a relief and also the hardest thing ever. It's complicated with this disease. I could go on and on because of course it was a profound experience. I hope you find the help you need, and do bring hospice in because they are very good at making our LOs comfortable. they can also answer your many questions about the process and are generally staffed by very kind folks.  Take care of yourself. 

May flowers

What hospice does for my FIL is a weekly nurse visit, a weekly CNA visit (for a sponge bath), supplies and medical equipment. This has helped a ton.

The day to day care still falls on me and DH. We had to hire a part time caregiver to give us a break and help us out. In our case, I still have to be around when the caregiver is here because she sometimes needs help transferring him, but she is over 60. A younger caregiver (or a male) might be able to do more physically, but so far no one is as good as she is at relating to him and handling him gently.