@A MyParkinsonsTeam Member, How long has your husband been diagnosed with PD? Do you get any time away for yourself? You have to take care of yourself in order to care for your husband. Then you can come back and feel rested and energized.

My husband was diagnosed shortly after we were married. He is going on 14 years now. He also has dementia, which is getting worse than the PD. We have a lot of issues that I am trying to deal with myself. It ain't easy!!!!

But you have to give yourself a break every now and then. Realize he is going to fall at some point. Be ready to handle it by educating yourself in gait belts, how to get him up if he is not hurt. If he is hurt do not fear calling an ambulance. They will help your husband up without charging you anything. They can determine if he needs medical attention.

Is there a support group near you that you can attend? Maybe a friend to talk to? This support group is excellent for support!!!

I will say a prayer for you! Blessings!!

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A MyParki...

I am at the same place. I never thought of moving to an assisted with my spouse. I am looking into facilities. I am paralyzed when it comes down to really thinking about it. I live in fear with all the falling down etc... I feel like everyday is one step away from a tragic fall. asssiting with showering etc... I hurt myself in the process and have lost the ability to even know what normal is. People often question why he;s not in a faility and from what I read on these boards people really seem to take on a lot to care for a loved one. I get that- when you love someone you want them to have good loving care.
I want to be responsible and keep him safe but it is impossible to know when he will freeze and fall. Why do we feel guilty and bad about this thought? In some ways ( I don't know if i am trying to justify this) but I feel keep him safe is the most important thing- keeping him clean, allowing him to socialize with others and perhaps have a disability friendly environment where he could get around and not fall. I would be loyal and be there for him of course.
When is the right time to consider this- after a fall? A fall that might not happen?He has the orthostatic hypotension too. A fall that might happen. I have to leave my mate alone all day because of work. He does not fall daily- we cannot afford day help and unless he falls he can get by- Then I think he will probably fell in Assisted living so why go there. I have lost my ability to think clearly. I do all the showering , cooking etc..l. not too bad. I just live in fear. I am scared all the time not knowing if I am in denial. I have not help- the kids are girls and although they are supportive. I would not ask them to help clean him when he has a bathroom accident etc.. or help him shower or change. So they are great for moral but not able to physically help. I feel so alone and depressed. Docs seem to go with keeping him at home as long as possible.
I think it would be a good idea to make a plan before I need the plan so I h=can have options not be stuck with whatever can be paid for. We have limited resources but could afford some assisted living, then medicaid.
I feel guilty for even writing this. I feel guilty for wanting to have one minute to myself and having my life back. I feel for my spouse and cry for him - I cry for me. I really have a hard time accepting things that are happening so fast. I don;t know what to do with my feelings. I feel like I am in a black hole and wonder what a life filled with anxiety and depression will be like. when to know the right thing to do. I also cannot talk to my spouse about this. He has such terrible anxiety that anything that upsets him throws him off physically and he falls an cannot function. Walking on egg shells these day. I don;t want him to lose hope.
Sorry for that long response- needing to vent.
Hugs.

Nothing is inexpensive--private care to the home is between $13 and 19 an hour so over a hundred a night. Assisted living is about $4800 a month for level of care needed but that includes care and food and the apartment--some bedroom. That is cheaper by far than round the clock care at home.

Hello @A MyParkinsonsTeam Member

My personal experience has been with both of my parents needed assisted living after both breaking their hips, and this was over 10 years ago.... This was a nice facility, but the least expensive we could find, that we felt could give them the assistance they needed, but also have the facility within when they needed daily help.... For 2 rooms, each having a small refrigerator and your own bath room.... it was $10,000.00 per month plus extras.... meds, having visitors for lunch / dinner, cable and etc... Needless to say over $120,000 per year - definitely ate into their estate... and lived their almost 10 years....

On the other hand, many of the patients without assets, were there because of Medicare.... Alan

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A MyParki...

Thank you,Sterling. Andre was a radiation oncologist so we are blessed financially. Living in the country is our big problem. Half of Andre's cancer patients were cured if diagnosed early enough. But how many Parkinson's patients are cured? NONE!!!!