what am I to do

[Ep0522]

I don’t know or have any plans of what’s going to happen when I get to the point I can’t take care of myself or as far as that goes my husband. I was diagnosed with Parkinson’s in 1999. I see my symptoms worsening but I guess I have never really faced what is coming until now. He has schizophrenia which is well controlled with medication, but relies on me to give him his meds. A few months back he thought he could do without them and I had to take him to the er which is a 45 minute drive. Took a couple of months to get him regulated. If this happens again this will end me.

We have no plans in place. Can’t even decide what to do. I usually make most decisions. I guess we will both end up in this sorry local nursing home. My daughter, who has 4 small boys and a very small house, wanted us to move nearby, but so much involved. Don’t think I could afford it even after selling my house. I live in a very very small town about an hours drive from her. And don’t think my husband would be willing because he has many friends here.

Don’t know if I should make plans or just wait and see. Confused. 😢

[Jimmary]

HELLO Ep0522,

Sorry to hear that you feel so down. I understand. You may want to look at parkinson.org/ they have a support page and maybe there will be something that will be of help to you. Dont give up looking for a smaller house that is closer to family , less overall cost and easier to maintain. Ask friends and relatives..someone knows a good realtor..

As for me i have had insomnia, weight loss, unbalance, swallowing issues, tremor (my dominant symptom), slight limp, complete exhaustion and extreme sweating after short walk and dyskinesia. In August 2023 I had MRI Focused Ultrasound (which are for those that are tremor dominant) on the right side of brain. I had it done hoping for relief in tremor and dyskenisia on left side of my body. But to my surprise insomnia, weight loss, unbalance, swallowing issues, slight limp, complete exhaustion and extreme sweating also are gone the tremor on the left is reduced. I still have PD and i still take meds..my symptoms are right side tremor and a feeling of having weight on my shoulders during my off times.

Hopefully the results will last..so far so good.

I will be praying for you.

1 Peter 5:7

[Ep0522 in reply to Jimmary]

Thank you so much. Very encouraging.

[LeharLover62]

Hubby and I live alone and I have many of these same fears. I find these big decisions as the PD progresses to be very difficult and almost impossible to work through on your own or in an emergency situation.

I suggest getting a ‘what if the worst happens’ plan together soon, and that will relieve your stress.

Can you talk ideas through with your daughter or a friend? Maybe there are other nursing homes close to family that are better options? Or maybe renting a place near your daughter is an option. What about in home help if he has another episode?

We hire caregivers and I gradually increase their hours each year so I have support when needed.

Take care of yourself and stay safe.

[Ep0522 in reply to LeharLover62]

Thank for your encouragement. Will have to consider everything. Another thing I have to consider is we are living in the home place of my husband which he is very comfortable with.

[Lionore]

I have come to accept that having PD and now facing my partner’s cancer diagnosis will sooner or later mean leaving our home for separate supportive housing as our children live elsewhere. Try not to let yourself worry but put whatever supports in place to be safe and comfortable. I am now ok with having my kids make those tough decisions when the time comes.?It’s about trust.

[Ep0522 in reply to Lionore]

So sorry. A very tough place to be.