Alone with no visitors

tboard · September 19

My DH is transitioning between stage 7 and stage 8. He has mixed dementia and is receiving hospice care. He is now in a memory care facility. There are at least two other people in his section who are also dying.

I have been with my DH for 6 to 8 hours each day for a week now. So far I haven't seen anyone in his section get a visitor. I know his neighbors well and it makes me sad that no one comes to see them other than the hospice staff and the staff at the MC facility.

Memory care facilities are not the easiest places to visit but you get used to it. There are worse places to visit.

I can tell by the way staff treats me that having someone sit with their loved on for hours is rare. They are not sure what to say to me or how to treat me. They mostly keep their distance.

I ended up bringing my DH some food. Even though we pay $1400 a month for his food they can't seem to find anything that an old man can eat when he doesn't have his dentures in. One aid offered a stale piece of cake that sat in the refrigerator uncovered for a few days. I said no thanks and she offered it again the next day so I headed to the grocery store and bought some food.

The nursing staff is totally indifferent. Most of the aids that provide his daily care keep their distance. I feel fortunate that I have family that stop by to check on us almost every day.

If you have a loved one in a memory care facility visit them often. People who have visitors are happier and they get better care.

Arrowhead · September 19

I only live 3 miles away, so I visit my wife, mid stage 7, 6 days a week. I do see family members of some of the other residents and have gotten to know a few of them.

caregiving daughter · September 20

Yes, and visit all different and ever changing times. If you loved one gets agitated when you visit, observe them from afar and find someone else to visit. Get to know the caregivers. Say thank you. People post here about when their loved ones say such terrible things to them (my mom said very unkind words to me). I try to show empathy for the staff as I know residents are saying mean things to them too. Yes, they are professionals but it does get to you after while.

sandwichone123 · September 20

When my spouse was dying in memory care I was very aware that other families and possibly staff were judging me for not being there more. I was (and am) still working full-time and doing the best I could. We see the residents at one moment in the decades-long relationships they had over lifetimes, and we cannot know what is going on in those relationships or in their family members' lives.

Now my dad is developing dementia and his caregivers have their own judgements. He never had time or attention for me until I was 60. Now all of a sudden he has always loved me and I should give up my 60s to care for him. I am supportive, but I only want to deal with his issues on the time that is budgeted for him. Not 24/7 whenever someone else is having an issue.

tboard · September 21

https://alzconnected.org/discussion/comment/282730#Comment_282730

Yes. I know that I am fortunate. I will likely go back to work but for now I can visit often. I am sure there are reasons why so many people end up in MC facilities with no visitors.

Mitsu2 · October 1

I visit my husband frequently and I also have the feeling that many staff don't know how to interact. Many of the nurses and CNAs are dismissive if I bring up any concerns. I'd say that only 4 out of 20 patients on his unit have regular family visits.

Today, I sat with my husband at lunch, chatted with the other patients at his table, and helped them get started on their meals. After lunch, I realized that there were no staff in the day room with 8 patients, several who are fall risks and others who are aggressive. I looked down both hallways - no one there! A social services staff person showed up and when I told him no one else was there he laughed and said "I'm here." But then he looked around and realized that there really weren't any staff! The nurse reappeared, and I guess one CNA was on break and the other was showering someone. A lot can happen in 10 minutes with patients who need that level of care.

So now I'm looking at other facilities because I'm concerned about my husband's safety.

Quilting brings calm · October 2

I was very lucky in that my parent’s AL was staffed by mostly wonderful people / both the residents assistants and the nurse. There was a training problem with the weekend shift and that got taken care of by the weekday shift and the nurse, who read them the riot act. Hospice was called in when my step-father started going downhill. He lasted 13 days - and his decline was rapid. My mom was put on hospice for extra help with her ADLs for her dementia - but she thought that meant she was dying and lasted just five weeks. I began coming more often - daily towards the end. But I wasn’t there all day every day because I just couldn't be. I had duties elsewhere with my spouse on disability. We were still grieving the loss of our younger son. My step-dad didn’t want me there because his dementia included paranoia. Arguing with my mom because she refused to eat got neither of us anywhere. Both of them responded better to the staff than to me. Like sandwichone123, my childhood wasn’t the best and that had never gotten better. My siblings and I were all damaged from it. There wasn’t really anything for me to do there besides just be there. Watching someone sleep …. And I think I was clueless about the fact that they were actually dying until just a few days before.
So I don’t judge anyone in this area. I dob’t know how many years they’ve been caring for their loved one. I don’t know their own health issues, their marital status, their home life, their work life, their relationship with their loved one.

easy23 · October 2

https://alzconnected.org/discussion/77143/alone-with-no-visitors

I visit my DH almost every day in the nursing home. Most patients do not have regular visitors. I sit in the day room for a bit with DH and am out and about in the halls. My DH is in a highly rated NH. I have seen some things that are eye opening and have even contacted the ombudsman. I would look for another place for DH but I think I will find the same problems everywhere. There are staffing problems and quite honestly, I feel that some of the staff actually dislike the difficult patients.

Alone with no visitors

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