It’s only been 6 weeks, but I am always full of nerves & dread (& guilt) as I head over to see my mother in MC. It’s a horrible feeling. I’m not sure if it’s because she blames me for her being there, that I sometimes find her in rough shape - angry, miserable & terrified, or just the uneasy feeling of not knowing what to expect and not being able to control it.
Her diagnosis is brutal; late onset bvFTD. I didn’t ever imagine it would be this hard. I guess I had a “rose colored glasses” belief that she would - in the end - have memory loss, but be fairly pleasant & content while living her last days with me - and I would hold her hand in her own bed when she passed.
Six weeks is not long enough for either of you to deal with this Life Change. It took me months. One thing that helped me was staying in contact with her nurse. I got the true picture of her behavior from the nurses and aides. They told me she was doing well. They told me not to visit every day. That made things worse for both of us, they said.
If, after a few more months, you find yourself still on the verge of a breakdown when you go to visit, speak with the social worker at the facility. You can be referred to a therapist who can help you deal. Good luck and sending many hugs.
i didn’t visit for the first week, then with the guidance of the staff - I visit 3-4 times per week, unless they tell me she’s being a little more agitated after I leave, then I skip a few days. It doesn’t seem to matter, she either thinks we haven’t been there for weeks, or she thinks we were just there.
I do think the staff likes me there - When I walk in I say hello to everyone, and they (other residents) seem to respond well to me. My Mom is & always has been very anti social. She’s become more & more paranoid. Doesn’t trust anyone, although I have seen this past week that there are two people she actually calls her friends! Progress I hope!!??
thank-you for your Encouraging words - it really helps to know I’m not alone, and others have successfully navigated thru this! ❤️
I feel your pain. I wish it would get easier for both of us, but I don't foresee that being a reality. All I CAN tell you is please don't feel guilty. We're doing the best we can given the circumstances. Many daughters would have stopped visiting and calling by now, considering the criteria we're dealing with. We haven't given up; we keep coming back. Some families drop their mother's off in an ALF with a piece of luggage, never to be seen or heard from again. When my mother was in rehab, the nurse told me the woman across the hall was screaming in pain 24/7 because her POA wouldn't even answer the telephone to authorize hospice comfort care for her dying mother. So the woman would die alone and in excruciating pain.
Don't feel guilt. I don't. It's not warranted.
Wishing you the best of luck, my friend
Yes, TV always showed the "seniale" person sitting in there rocking chair staring at the wall unresponsive and humming to themselves. But as we know, Dementia does not work this way.
How many times do you visit? Maybe you could cut back. Mom needs to adjust and you visiting may cause her some anxiety. Maybe she needs some medication for her anxiety. Its really hard. She eventually will adjust it will become her norm. She needs this now. She is beyond what u can do for her. She is safe and being cared for.
I made a point to be in control of the visit. Meaning, I brought something for us to do. I made sure that I brought treats that could be shared from my dad to others, I participated in activities with him and I left if he got nasty.
Sometimes I would cut his hair, do his fingernails and eyebrows. Sometimes I would push him around the facility, inside and out.
With my granny I would share a coke and play catch with a stuffed animal. I would help her change her babies outfit and of course make a big fuss how beautiful the baby was and how big she was getting and what a good baby. She was a beautiful spirit and had a playful manner until she died. She was so easy compared to others.
I recommend that you find things to share with her, no matter how simple they need to be. Be as matter of fact and positive as you can be. Fake it until you make it. It does get easier.
Set boundaries and enforce them. If she is grouchy, cranky or mean and nasty it is a short visit. If it is a pleasant visit then you spend some time.
She is where she can get the care she needs, your part is about enriching her life and advocating for her. Be kind to yourself and know that you have and are doing the best you can for her.
Things did get easier. I started taking Dad a favorite snack and he would usually remain pleasant at least until he finished eating it, which gave me time to see if he needed anything (socks, lotion, etc). Dad was still pretty good at checkers, so I would try to get a game started as he finished his snack. I would bring an old photo of the town published in the local newspaper or on Facebook and ask some question to get him started. "Is that how you remember the Sears building?" and he could talk for an hour. Dad and I had enjoyed singing when I was a child so I brought a song book and we started singing again. He really liked the attention when other residents started coming to his door and we started going out into the common room for the singing. When Dad couldn't sing anymore, I still took him into the common room and sang for the residents.
Dementia changes our LOs but often it leaves small pieces of them around and buried somewhere in the middle of the confusion. You can never have the relationship/interactions back you enjoyed from their pre-dementia lives; however, you can still find some things to mutually enjoy or tolerate for at least a few minutes. For me, going back to my childhood and the simple things we did then helped. Because long term memory lasts longer than short term, getting my parents talking about things and people they knew years ago worked well; they could function better and I found some new and interesting stories.
Even if you find some way of connecting with your mother, there will always be sadness when leaving the facility. I could endure the pain for a weekly visit, but not more. It's a little like a weekly period grieving for the death of your LO's capabilities. But at least for me it did get better and I came to a point where I didn't dread the visits anymore. It's hard to believe but after Dad's death I was both relieved these visits came to an end and missed them at the same time.
Usually the Memory Care facility would recommend not visiting your Mom for about 4 weeks so that she can settle in. Yes, it is quite an adjustment for her, and for you. It could take several months or more before your Mom gets into a routine. And yes, your Mom will continue to blame you and will insist you take her home.
If you had children, compare this to leaving your child off for the first day of school or at college out of town. You probably didn't yell FREEDOM and enjoyed the day, but fretted on how your child was doing, was he/she scared, was he/she missing you, was he/she making new friends, etc.
I am getting into my car. The door sounds solid. My keys are heavy. The car smells of [something nice, I hope!]. The road is dry. The music on the radio is a song I know. Until half past seven, I will be in my car driving along this route and I will see x y z.
Once parked and walking to the building, remind yourself that you are still taking one step at a time. That you are there to cope with what the day presents, and to give your mother what support you can. But that if what she needs goes beyond your ability, you will give her words and a gesture of love and then be free to turn and walk out and leave her in safe hands. The next visit will be a new opportunity to try again.
That is a brutal diagnosis. Be extra kind to yourself whenever you catch yourself thinking it's your fault you can't put everything right.
This helped me a great deal.
Mindfulness.