I am 15 years into the caregiving journey. First for my father, who was a quadriplegic by the end and now for my mother who has Alzheimer's and is in memory care. She has now taken another turn for the worst and most likely needs a wheelchair. One of the few positives up until now has been that she was mobile. Mentally, I am really struggling with the thought of another loss of any kind. I am losing the one positive thing that I usually think, "Well, at least she can still walk." I am so done with caregiving and Alzheimer's but I am going to have to suck it up and find the strength to keep going. I guess I would like to know what has worked for other people when you reached the point that you are so done with this situation, but the cold hard reality is that this situation is not done with you?
The wheelchair wasn't a huge deterrent for her, really. She managed to get around with it just fine. Lots of the other residents in her MC were also wheelchair bound, so she wasn't the odd man out, either. Your mom will be FINE and she'll likely adjust to the wheelchair and learn to maneuver it all around the MC like a pro.
As far as your state of mind goes, what do YOU need to do to care for YOURSELF now? Mom's okay in MC; her needs are being met there and you're not responsible for her day-to-day care, nor are you responsible for her happiness or for how she adjusts to the wheelchair situation. In reality, this isn't YOUR loss, that she's going into a w/c, it's HER loss. SHE is the one who will have to acclimate to the change and seek the support of the staff at the MC and perhaps physical therapy (like my mother did) to help her learn the ropes of the new chair. You can arrange for PT and OT to come see her, but then it's up to HER to do the exercises, etc.
Decide how often you want to go visit mom and call her. What will it take for YOU to find peace within and to also advocate for her care in the MC? It shouldn't be taking up ALL your time or all your mental headspace to do this! If it is, something is wrong and you need to examine what. The whole purpose of managed care is to release YOU from the 24/7 aspect of caregiving. If you're internalizing too many of mom's issues, you have to find a way to let it go and find something that brings joy to YOUR life! Alzheimer's has robbed all of us of ENOUGH already! I know what that feels like, trust me.
I really did feel like my mother was going to live to be 100 b/c she was plugging along just fine, in spite of her advanced dementia and chronic agitation. Then last Tuesday, out of nowhere, she went to bed b/c she couldn't sit up anymore in her wheelchair; her core strength was gone and she was tired. She is now in the active dying stage and not likely to live another few days. The truth is, only God knows when our mothers will transition and leave this Earth. That's not to say "Oh just suck it up and deal with it, she'll be gone soon enough"........not at ALL. It's just to say that things can change on a DIME, when you least expect it. I feel relieved that mom is approaching the end of her life now b/c dementia/Alz is a HORRIBLE thing to be afflicted with, and the pain it causes ALL of us is beyond words.
I wish the very best for you and for your dear mother. I hope that YOU can find a way to honor yourself throughout this dreadful process and to find some joy to inject in your life b/c you deserve it. Sending you a big hug and prayer for peace, too.
What do I do? I build self-care, loving connections, and meaning into my "non-nursing" hours and days. I know that the work is not going to change - like your situation with your mom - but I have choices of what I do with my time and how I react to the difficult situations that come my way. Since I belong to Jesus Christ, I find that He gives me strength and peace of mind when I need it.
What happens if you do not survive this? What then for your Mom? Well, I will tell you. She will be where every other person who ages without friends, family or children. She will be in the care of others.
Please accept the reality of your life. Shed the tears. Mourn the day has come you can't go on. If you need help to comb some of this out, then seek it and know that often a licensed Social Worker who is trained in counseling on life transitions is much better in these cases than a pyschologist, because you don't need FIXING, you simple need understanding, a way into acceptance. That old prayer about changing what we can, accepting what we cannot change and wisdom to know the difference is entirely right on.
I sure am sorry and I certainly wish you the best.
Try not to see your mom’s need for a wheelchair as a loss, but as a way to keep her safe.
*This does not apply to Lealonnie's mom who falls out of her wheelchair constantly, but I think she's more the exception than the rule.
I have cared for my husband post stroke for 22 years. Each stage of that journey has been grieving a loss. The last several months has required other caregivers, morning and night, because at 85 I can no longer do the physical lifting.
Although I am a trained therapist, I find it necessary to see someone else, periodically, to put things in perspective. (It is a very safe place to cry).
Why do you think your MIL's life is more important than yours?
Believe, me I am not saying any of this is easy! I had a realllly hard day with my mom yesterday, starting with poop on her bathrobe which nearly put me into orbit. She had such a confused day and it was HARD. Thankfully today she is back to her normal level of confused. So, not always easy but we can get through it.
See All Answers