Saturday, April 12, 2008

It May Be Time For A Nursing Home

I'm still here, and so is mom, but it has been a rough couple of weeks. I'm not sure how much longer I'm going to be able to take it.

She wandered off twice last week and the neighbors brought her back. I was laying down dealing with the pain of passing two kidney stones when it happened. I'm angry that I can't even have a sick day. That, amidst excruciating pain, I still have to put her first because she can't/won't behave. It makes me very irritable.

I've felt this whole situation isn't fair before, but this is the first time I've really felt like it is a bad situation for me. When I have to find coverage before I can go to the Emergency Room (for the unbearable pain), something is wrong, and I've got to place my needs higher.

Another day last week, she went out to sweep the sidewalk. I went and laid on the couch to rest. I hadn't slept for several nights. When the aide got here, she found mom laying semi-conscious in the backyard. She calls the service provider, a nurse was dispatched, and I was grilled like I'm neglectful.

I'm going to start looking for a nursing home this week. Over the years, I have tried to be sweet and nice to get her to do things but my patience has been exhausted. I've resorted to telling her that if she keeps it up, she's going to require 24 hour care and that means a nursing home. It isn't nice to hold that over someone's head, but I don't know what else to try even though she can't grasp what I'm saying. Trying to be logical with a dementia patient isn't very logical at all. Of course, she can't remember a thing that happens but she remembers that we're plotting to put her away. Sometimes I think she is manipulative with selective memory.


Greg said...

I know it's hard to feel these things, but you are so right about having to value your own needs.

There's also a threshold you reach when you realise that at some point the arrangement is guaranteed to fail and that failure will be when you break.

I'm with you on the frustration, the touches of anger, the guilt. I've done my share of trying to argue, when there's no prospect of my Mother retaining what I'm saying. And I'm so grateful that you're articulating the suspicion that there's a little unfair manipulation and selectiveness about the memory problem. There's a certain mischief at play sometimes, don't you think?

I know that at root you're speaking from exhaustion and discomfort, but it's a truth that you're describing.

People who (I suspect) haven't gone through this say "Your Mother raised you and so you should look after her in her situation", but are we really looking after them the best way when we take on untrained 24-hour personal care without relief? (I know you've recently hired an aide, but you know what I mean). Would our Mothers (when they were more themselves) have wanted us to give up everything for them for several years, wear ourselves into the ground with no hope of a reprieve?

Perhaps, in my case, it helped that I had gone through several years of bad depression at one point and I am alert now to some of my triggers and my needs. My Mother wouldn't have been in the best environment for her if I had crashed again.

I'm sorry if you feel that a Nursing Home/Dementia unit will feel like a failure, but it might be that your Mother, like mine, recognises the one you choose as a better place. My Mum had been torturing me for years with the "I suppose now you want to put me in a home" remark, so I was shocked when she took to her new place so well.

I know, from reading your blog, that you will consider this carefully and check out every option until you find something you feel is the best solution for you and your Mom. I hope you are as fortunate as we have been.



Anonymous said...

My mom wandered too and based on comments by the people who interacted with her during those journeys, she really was in another world. (Double-keyed deadlocks kept her in but her protests were agonizing.)

I think it's best to assume their reality is not our own and, as you said, logic is right out. In my mom's case, memory seemed to be confined to habitual behaviors, very happy events and very scary ones. Being "put away" falls under the latter category. The day-to-day details were just lost in the fog.

That said, do look for alternatives. I had to put my mom in an Alz unit. She required 24/7 care and I just could not do it. When her mom got to that point, she and two of her siblings took care of her for as long as possible -- yes, three very capable, healthy adults with a single focus and it was too much for them.

You may find that there are waiting lists. Adult daycare may be an interim option. Do let them know you're having health problems, waiting lists aren't set in stone.

You're at the point that was hardest for me. All the emotional and logistical stuff collided when I was in a bad spot of my own. Bottom line: one person can't take care of an unpredictable person 24/7 for very long.

Btw, my mom, who swore for years she would never be dependent on anyone, adapted very well to the Alz unit -- after she escaped the first day and was found walking along the shoulder of a highway five miles away. She was dressed to the nines, including very high heels. Someone mistook her for a visitor and opened the door, heh.

Tilly said...

I'm so sorry that you feel that you now need a nursing home for your Mum - but you are right. What would your mother do, if you suddenly fell ill and had to be taken into hospital? Presumably there would have to be some emergency care for her too - not of her choosing, not of your choosing. Much better to make the move in a planned way - so that you both can cope with the transition as best as possible. I have read your blog for a while - and it's apparent that you have done the best for your Mum. The fact that you feel you cannot cope now, isn't your fault, isn't your mother's fault - and it is far better to recognise that this, for you, is the tipping point. You have already done far more than so many do. I hope that you find a home where your mother is happy - and where you can both find some pleasure in visiting and being visited without the stress of keeper and kept. Be well and be happy. It is, after all, what any mother would wish most of all, for her son. You deserve it. Tilly x

Ruthie said...

I'm here by way of Moody Blue. I don't know why I haven't checked out your blog before but now I want to go back and read it all.

My mother has just moved in with us. She doesn't know it, but I'm pretty sure it is a permanent thing. She is in I guess the middle stages of Alzheimers and we just don't think she should be at her own home alone anymore. I don't really know how to define the stages, but I am feeling frightened and overwhelmed at the unknowns. I also believe that taking care of her to the best of my ability is the Right Thing To Do.

I am really grateful to discover this blog! I am realizing I'm going to need some support, and some friendly people who've been down this road ahead of me.

A Single Man said...

YOY, I feel for you. And I'm sorry that you've having your own health issues in addition to having to look after mom.

I've struggled with similar issues, as you know. And in spite of all my to and fro on the topic, I know that I just can't continue to cope indefinitely. You can't either IHMO. It's too much for any person to carry, especially when dementia is involved.

The first rule is to take care of yourself. And, if you can't do that and take care of mom, then you need to get some help with mom as in: you no longer are the primary caregiver.

I understand how hard this is, believe me, but everyone has their limits and it sounds like your body is telling you that you have hit yours. Mine has been telling me for awhile too.

If your mom were cogent, I bet that she wouldn't want you to suffer on her have to give up your life and maybe your health just to hang on to what's left of her.

I used to fear placing H in a nursing home… but now I think that it is one of the best things that could happen. Finally, then, I'll be able to get some rest and my sweetheart will too.

Gavin said...

ruthie--I'm sorry to hear about the condition of your mom. Hopefully, the writings of my experiences will give you some perspective.

It's a tough road, that's for sure.

Go to the Alzheimer's Association web site (click link on left) and they have a way to gauge the seven stages. Click on "Alzheimer's Disease" on the main menu, then "What is Alzheimer's?", then "Stages".

Best thing I can suggest is to get to a doctor and ask about Namenda and Aricept together. We are early on with them and having some results already. Others have reported great success!

proudprogressive said...

oh YOY angel , your body is telling you something. You are stressed and deeply ditressed. There is no shame in overwelm. We who have read your blog have been with you in spirit step by step. You have shown us your heart with compassion humour and candor. Dear Man, i hope there is a bed available for you mom at a decent place. An Alz unit can be quite the right solution especially with the family involvement AND YOU WILL BE RIGHT THERE. It will make a difference in the care she recieves.

Its time , i am glad you are pondering it - she needs you in one piece. You need you in one piece. I hold both of you in my heart. Its ok. You have not failed , it is a mericiful step. It is a sensible step.

much much love - nicki