Question for caregivers on how to prepare if you had to do it again

Sylvia222

New Member

Joined : Jul 2014

Posts : 5

Posted 7/17/2014 4:44 PM (GMT 0)

Hi,
I have Parkinsons, chronic rheumatoid athritus and lupus, plus various autoimmune conditions that come and go. I also have severe depression but has finally under control for two years now. In the last year or two I'm having increasingly more signs of dementia setting in. I'm trying to keep it a secret for now though I know I can't for much longer because everything is so much harder and I know I'm no longer doing even basic things because I struggle to even go out to get my mail, for example. I can spend all day planning it but it seems too complicated. I have moments of clarity but they seem further apart now and its being noticed. I just have my 25 yr old son who lives near by. He is now engaged and new job. Working hard to pull himself out of the poverty he grew up in. I've been sick and a single mum since he was six months old which is why its easier to hide things, I can easily say I just woke up. Or its my meds etc.
But he knows I can't say a sentence outloud without forgetting simple words for quite a while now. I have never let him come to the drs. But I will soon. Community services has psw workers coming in to help me. That's not new to him either, had that before DX with PD. I plan to go to nursing home or assisted living, I don't want to burden my son with caring for me but might be waiting list so it might be unavoidable for a while.
OK that is general situation. My question is, if those of you who have cared for loved ones with PD with dementia or lewy body, if you did it again, how would you prepare in advance to make it easiest on you're!ves? Which things did you wish your loved ones had done but didn't? And if I'm forgetting anything important please add it. I prefer the plain truth no sugar coating so I am clear about what you are saying.
Its taken me half a year to sign up and post this, I have to do what I can do when I can get chance to do it.
P.s. I live in Ontario Canada.

brainstorm

Regular Member

Joined : Jul 2013

Posts : 40

Posted 8/25/2014 11:45 PM (GMT 0)

Hello, I just noticed nobody has replied to you. I will do my best. I was a hands on caegive to my mother for over 14 years. She had Parkinson's, joint issues - knees and shoulders, scoliosis, Hypertension. She could not walk in those last 14 years.Since you have already decided on going to a long term care facility, the major caregiving decision has already been made.

1. Get your financial and legal affairs in order - have a will, trust, power of attorney set up. You may even need to consult an elder care attorney even if you are not elderly so that they can help you determine how best to handle your assets, etc.
2. Make a decision about whether you want life saving measures to be undertaken, should something happen to you healthwise. Decide if you want your son to be your healthcare proxy, and give him Power of attorney over your medical care and also one for your financial affairs. This is very important because of the dementia. The sooner you have that in place the better it is. I am assuming there is nobody else to challenge your decisions.
4. Tell your son, the sooner he knows the better off you both are. No sense in hiding the inevitable, it is a heavy burden to carry for you emotionally. At least you will know ahead of time how he deals with it and you can plan accordingly.
5. There may be a Parkinson's Support group in your vicinity that you may want to take part in and communicate with others going through the same thing.

Hope this helps. Good Luck.

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