For those who care for someone with Parkinson's disease
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| I just had a meeting with the director of the Adult Day Health Program that my husband has been attending 5 days a week for the last 3 years. She wants me to consider sending him to a different facility owned by the same group that owns the one he currently attends. She feels that because his PD has progressed he would receive better care at that facility. My daughter thinks it is because the other facility doesn't have enough clients so they are trying to shuffle people around. My concern is that any change in his daily routine would cause him more confusion and anxiety. Any opinions or insight? |
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LC, I am trained to be an Activity Director in Assisted Livings in California. Part of that training involved an intense, many months' long training with patients at all stages of care, in all types of centers, including Adult Day Care. I can tell you that family members NEED to be comfortable with the care their loved ones receive. ANY reputable center or home would allow you to drop in to see what type of care they are receiving or need. I suggest you drop in to see for yourself. I understand your daughter's concern for her Dad, but this needs to be YOUR decision. One way to look at this is to realize that the current place may be short staffed and may not be able to give him the one on one attention he requires; therefore, they are suggesting a move to a place with either fewer patients or more qualified staff, or both. I tend to err on the side of the people who are with him daily. That said, again, YOU need to be comfortable with his care. YOU know him best. Does he become disoriented with change? Does he have a level of comfort in familiar surroundings? Or, would he benefit more with a move? Again, if it were me, I would visit both facilities before I decided. It will take some time, but your peace of mind is extremely important, too. Bless your daughter for her concern, as many don't seem to even visit their PWP! I hope you are able to make the decision which makes your PD journey as easy as possible. |
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LC, I don't know if your husband is aware of his surroundings all the time or not. If he is having problems or to what degree any problems he is having mentally? I do know if he is aware of his problems and the general flow of life around him, he should be consulted or included in the decisions. Even if it is just a bit. I'd talk to the staff where he is to see if he can remain where he is but give the other place a try for a week? No transfer until he has a chance to try and discuss with you if a change will upset him. While family members should be comfortable with the care given it all boils down to the patient being and feeling comfortable with the care They are getting. On another thread recently it was brought up that We patients must be afraid esp. of the future of our disease, yes we are and one of our biggest fears (mine anyway) is to lose say in our treatment and our life. To be put somewhere without say, to be shuffled around like luggage. I'm not saying anything negative about adult daycare or centers or using them for caregivers relief because We patients need a break and so do our caregivers. We all need to interact with more than just one or two people. However just as one needs to do things they can for as long as they can it includes inclusion as much as possible our say in our lives. I'd see if a trial run at the other place can be done before making it happen and asking your husband so he feels included in the decision. Little things like that mean a lot to us . |
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I have found that involving my husband in his own health care choices makes life so much easier. He has control when he is capable. I am there in emergencies. I find my husband is more committed to success when he made the choice. I also agree that family members should check the suggested facility. Their motivation for change may be benign rather than evil and self-serving. Perhaps the patient needs a higher level of care. Perhaps the new facility has more therapy options or is more age appropriate. You never know unless you check is out. |
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| Al, excellent! In NO way did I mean to NOT include her husband! I am glad you caught that! I wholeheartedly agree to include him. NO one wants to give up decision making until they HAVE to! |
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| Thank you all. I did talk it over with my husband at time when he wasn't foggy or confused. He said he wanted to stay where he was. That was good enough for me. I called the director and told her he would be staying put. |