I really need to know how to make this transition and how to keep her happy in a new place. And how to deal with my loss of my mother now and in the future.
I have to say I am feeling so mixed up about this. My heart is breaking. I love my mother and I wish I could take care of her here. I have done the best I could. She came as a 2 person assist, she had little strength, was shaking all the time, and couldn't carry on a conversation (May 2014). I helped her with PT get her strong enough to become a 1 person assist, to use a walker once she got on her feet, and to use the walker to the bathroom or other rooms in the house. She only was in her room to go to bed. I got her a caregiver companion most days of the week, she was up, showered, hair done, and dressed, every day. Ate meals with us (I cook from scratch just like my mom did). I fed her really well. She gained a sensible weight back (about 25 pounds) and has maintained that since July 2014. She has her PT therapy every day here. We saw to all of her appointments. Got her out for long rides on the weekends.
In her previous "home" she had lost 40 lbs, laid in a bed continually, laid in dirty diapers (she had urine scald), and was drugged up with no daily life or activity and only had a TV for companionship. It was a terrible existence.
It's hard to let her go and not know what is going on with her daily. Before she was unwell, we had a great relationship, she was my Bopsy Twin, she was my friend, not just my mother. I talked to her a minimum of twice a day. I saw her through my dad's death and getting back on her feet both financially and physically, and emotionally (2001). I rehabbed her through her aortic valve replacement, pacemaker things, a colon surgery and a repair. We would go Up North and clean her house and make meals for her so she didn't have to stand too long and on those trips we would take her on picnics and drives up the North Shore of Lake Superior. And going back some more, I would have her down here and stay with us, - I had her here on all of the holidays, and when she couldn't make the trip down here I would bring the holiday dinner up there. We were very close. Our close relationship has been always that - since I was a kid to a young adult to after I was married.
My parents were great ballroom dancers and would dance at least once a week. We would go dancing with them. We had wonderful visits in Texas with them when they wintered there. It was a very different relationship than my other siblings had. I made my mom and dad my friends and I respected them as parents.
And now, on the other hand, both my husband and I are worn out. And we can't keep this up for a lot longer. And I know as her condition declines that the situation here will not be good for any of us. This dementia thing is terrible. I think that is the part that is the hardest to deal with. I'm not good in that area. And it sounds like placing her with less assets sounds nearly impossible and like we are sliding into this in the nick of time.
So I do this with heavy heart. And I worry about her. And I don't know how to handle future visits with her because I know she is going to be calling and wanting "to go home" which is her mother's and dad's - not even her own home that I grew up in. Though that does come to her mind on occasion - and that surprised me because usually it is reference to her parents home.
I really need to know how to make this transition and how to keep her happy in a new place. And how to deal with my loss of my mother now and in the future.
Sorry to go on, but I needed to share this.
Thank you,
LastOne
Have you checked out the new place to make sure they can meet her needs? It sounds like the other place wasn't doing their job. A nursing home should be able to care for her properly. I'd ensure that happens.
How oriented is she to time and place? What is normally her mood? Many dementia patients are not happy and content. Many are constantly searching for something and displaying anxiety and worry. If your mom normally does that, then it's not likely that she will be happy anywhere. I think that our expectations that our loved one will happy somewhere may not be realistic. There are things we can do to try to make them comfortable. It sounds like you have been trying to do that.
My loved one went on Cymbalta and it was a miracle med for her. It really helped her anxiety and worrying. We are very lucky that she responded that way to this medication. She's very content and says she loves her Memory Care facility. I might discuss meds if your mom is already depressed or showing anxiety.
I visited her, but not everyday. I didn't at all for the first 2 weeks she was there. When I called her she said she was fine. (At her first place which was a regular assisted living, she asked to go home everyday. She didn't at Memory Care.)
I would give her support when you are there. It sounds like you have been doing that for a long time. If she asks to go home, I would tell her whatever works. Some say that the doctor has to evaluate their progress and when they are rehabed enough, they will go home. Of course, most patients don't remember this explanation from visit to visit. It's what works for the moment, IMO.
I like to make my cousin's room cheerful with colors and happy themes, but I'm not sure she notices. She doesn't really focus on anything for more than a minute. But, still it makes me feel better, so I do it.
You can play her music, look through old photo albums, and talk about the old days, assuming she's able to do that. If not, you may just hold her hand, brush her hair or put some lotion on her arms.
I wouldn't tell her of the move in advance. It's likely she will forget it and you'll have to keep reminding her and upsetting her over and over. I would just say it's time for the rehab move and then go. Stay calm and don't cry like it's a sad thing. Just treat it as a ordinary thing that will be temporary.
If my cousin does get upset, (she doesn't know what is wrong), I will comfort her and say that I fixed it all, that I'm there to celebrate and that I have brought treats. (I always bring things like her favorite beverage, ice cream, fries, etc. and a small gift like a bracelet.) This distracts her and she soon feels much better. I do know that there is nothing I can do to really ensure her happiness though, because it's brain damage and I can't change that. Many dementia patients aren't happy anywhere they live.
I feel horrible about placing my mom away from my home care. I feel like I'm failing her. She would have helped me to the death of herself if the situation was reversed. I probably could have continued if my siblings would have participated with their support and care for her - but not one finger was ever lifted in the whole time my mom as been at our home.
The worse thing about it is now my mom's choices are even less in her daily life. And no family to wake up to.
I am sickened by this decision, yet I don't know how to go on. Or when thinking of her future deterioration how I would not be able to cope or work with that at our house. I don't have the skills and where would be get help for that?
This is the roughest patch of life I've gone through and it is so emotionally and physically draining.
I work full time (from home at a major university) and hence the future deterioration thing would not be a good situation. Even now my professional job is taking a hit.
I feel like I'm between the devil and the deep blue sea.
I didn't sleep well last night either - hence I was up at 3:45 a.m. working on my job so that I was doing something positive and moving forward.
LO
I am truly sorry to read that you're facing such emotional trauma and turmoil and that you and your husband feel you both need to make a change. But I think others who've been in this situation will have more insight than I and confirm that it is the right thing to do when you recognize that home care is too difficult.
The WRONG thing to do would be to try to fight against the forces of change that have taken place, and to literally fight a losing battle since you recognize that the situation has changed.
However, and this is what I always tell myself will be my mantra if the time comes....
1. What's the best thing to do for her? If you're worn out and can't keep up the vigil, but a staff of people can, then that's the choice to make. It's easy to feel that we are the right ones to take care of loved ones, but that's not always the situation, especially when we burn out.
If I recall correctly, you work in a college environment? If you need to do something differently to provide your employer with your best efforts, or if something else in the work environment needs to be changed and it can be done, would you do it?
Comparing your mother to a work environment isn't the best analogy; I'm just trying to de-sensitize the issue so you can view it with a bit more detachment. And believe me, I'm also still working on that myself!
2. If you can emotionally detach, or rather just set aside for the time being, to see the situation in a less personal light, the decision can be a bit easier since you're analyzing a problem, identifying a solution, and acting on it.
3. Any change will be traumatic for both of you. How can you address this up front to minimize that trauma?
There have been other threads on this issue; perhaps reading some articles and other poster's suggestions might help:
https://www.agingcare.com/search.aspx?searchterm=easing+NH+transition
I recall that there were some good answers on this thread:
https://www.agingcare.com/discussions/moving-to-nursing-home-scared-relieved-186381.htm
See also the thread referenced in my post - more good suggestions:
https://www.agingcare.com/questions/move-easy-for-dad-to-assisted-living-185662.htm
3. Reiterating what others wrote, I would anticipate the negative reactions, know that it will seem like an attack on you, but that you're providing an alternative that offers support which you no longer can offer.
4. One of the things I'm working on doing is pretending that I'm handling the caregiving as a work assignment. What can I do to ensure the best results. Seguing between this detachment and personal involvement is not easy, but it does help me analyze what's sensible vs. what's emotional.
I wish you peace, solace, and much luck with this difficult transition in your lives.
If you continued caring for Mom at home, your burnout would increase, so might friction between the two of you, and it would be difficult to maintain the level of care and self respect both of you need.