My wife was diagnosed at age 50 and has been rapidly declining over the past 2-3 years. We have 2 kids still at home. I work at home and am a full time caregiver. Very stressful. She is already at stage 6c. I have been struggling with depression as it appears I am on my own with this whole thing. I am not sure when to consider nursing home? What are the triggers for that? Looking for any advise on how to deal with the stress. Thanks, Jim
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I have a friend in Nebraska, that I met while taking a free online class through Coursera. He is also dealing with young onset with his wife. Her behaviors became too difficult so he placed her in a facility last fall. I have asked him if he has found any support groups that deal specifically with early onset.
The class was "Caring for Elders with Alzheimer's Disease". It was offered through Rice University. There were thousands in the class, and those with similar experiences did somehow find each other. Search out opportunities for online support.
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My husband's was not early onset, but I am quite a bit younger, and I was still working when he was diagnosed. I know that working from home and being a full-time caregiver is exhausting. Add parenting to the mix and I wonder how you are holding up! An adult day health center three days a week gave me room to breathe, to go into the office for meetings, to schedule my medical care, to run errands, and occasionally to do something fun. I am sure this enabled me to stick with it longer and with less stress. When my husband became too confused and needed too much attention for that program I brought in a personal care attendant. She got him up, bathed him, helped him dress and shave and clean his teeth and then brought him into my home office where I was busy earning our living. It was great to start the day that way! Then she fed him breakfast. She could get him to do his PT exercises more readily than I could. I took her with us to the county fair and it was a great help to have someone along.
When to place someone in a care center has a lot to do with the health, abilities, mental stability, and other responsibilities of the caregiver. If your wife were a single woman she would probably be in a care center now. It isn't really her status that triggers a placement, but more your status.
One way to reduce the stress on you and allow you to concentrate more on earning a living and being a father is to find a good place for your wife now, and continue to love her, care about her and for her, and be her advocate. It doesn't entirely remove the caregiving "burden" but it helps.
If you would prefer to keep her at home as long as possible, you need to focus on taking care of yourself, and on getting help.
1) See a counselor/therapist to help you deal with the stress.
2) Get HELP. Caring for someone with dementia past the early stage is not a one-person job. Have you wife go to a day center, have a helper come into your house. Do whatever it takes to reduce the workload and stressload for you.
3) Have fun. You HAVE to have some time off to golf or bowl or sing in a choir or have a few beers with buddies. This is not optional if you are in this for the long haul.
4) Make memories. I'm sure that you can't do all the things that you used to do together as a family. But there are probably some things that you can do and that your wife would still enjoy. Maybe you can't spend a week on the beach, but a partial day at a local lake might be within your reach. You know your time together is short. Make it count! (This is true even after she is in a care center.)
5) Get support. The couseling will help with this, but I urge you to find a local caregiver support group as well. And participate here. It is surprising how much it helps to know you are not alone.
A book that really helped me is "Loving Someone Who Has Dementia" by Pauline Boss.
My heart goes out to your entire family. Please keep us informed with what is going on for you and how it works out. We learn from each other.
The only experience I have is watching and listening to my boss and how he managed the care of his wife who had Alzheimer's for 15 years. In her early stages she was able to still help him in the day to day running of his business but when it came to math she was struggling and she knew it was time to retire.
When my boss' wife retired from work, he was able to find an adult day care where she could be placed during working hours, it worked out fine for a couple of years.... then he hired a Caregiver to be at their home 12 hours, which worked out pretty well as his wife really liked the person.
My boss told his wife earlier on that he promised he would never put her in a nursing home... but I really think there comes a time when one has to reconsider if not only for the safety of the person with Alzheimer's but also for the physical and mental health of the Caregiver spouse. At least you are considering it when the right time comes.
Just in my humble opinion, the right time is when the patient needs 24 hour care. My boss hired a Caregiver who was at their house from 7 a.m. to 7 p.m. and then he took over in the evenings and on the weekends. He would come into work exhausted because he was up all night due to bathroom mishaps and doing laundry which seemed to be night after night.
As for stress, what helped my boss was playing golf once a week, but I know for you getting away from the house might be difficult unless one or both of the children are old enough to help out for those couple of hours.