Anyone able to keep alzheimer spouse home until death
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This is where I am at…13 years with just me as caregiver and now Hospice...I am baffled....and second guessing myself, feeling guilty. It is actually good to learn this happens..these questions are normal and the guilt is a common thread. Thank you for posting.
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Hospice services were a lifesaver for me to enable me to keep my DW at home through the end. They provided help for about 9 or 10 months. As long as there was some level of continuing decline between each periodic evaluation, she was qualified for continuing hospice. I found that hospice nurses, while adhering to the guidelines carefully, are considerate and willing to help ensure continuing services. It was difficult and I did employ a couple of terrific ladies as caregivers a few hours a day to let me get some relief. Caregiver services proved unacceptable in the quality of people provided so I searched and found people who truly understand AD and the unique aspects of the disease.
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where did you search for people? You mentioned caregiver services were not good. My DW is 72 and only diagnosed a year ago. Currently in MCI.
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I used the local community online networks, referrals from others. Posted on care.com but had to be very, very careful as I got flooded with responses from many who clearly did not fit and were unqualified. Selected one from there and lucked out and others from local online networks after interviewing and screening carefully. I limited my search to those who lived within a narrow distance so that the travel to and from was not an obstacle nor overwhelming expense for them. Found so many claim experience with AD patients but fell horribly short of real experience or knowledge. I found that caregiver services were charging me, at that time, $35/ hour but the individual, after their deductions was only netting less than $16 or $17 per hour. Once I knew these details it made sense why I was getting such poor results. Pay a fair wage, interview yourself and be really hard with questions, try with monitoring. I have cameras installed to see the common rooms and I told them all that I watched them regularly. Some walked away. Some got asked to leave. A few select got hired. Lastly, if you know someone who is truly knowledgeable about AD (I mean really experienced and knowledgeable by experience, not by books and videos) try to recruit them to at least assist with interviewing candidates. I did that and she was terrific at finding good people. My DW was diagnosed with MCI in 2017 and I managed her care myself until her last year or so when it was too much alone. She passed in August 2025. Good luck to you.
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Howhale, I am pretty much following your playbook with my DW. Started with light help but now up to 4 to 5 days a week with a helper and hospice. Question - I mentioned to my helper that maybe we needed to bring in a second helper. I think she got a little spooked. I assured her she’s not going anywhere but it just seems like even the two of us struggle at times. How did you juggle 2 helpers if you don’t mind me asking.
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The two people I used split the 7 day workweek. They both worked part-time but each day grew to about 7 hours per day toward the end. You will likely need help every day at some point and that will require more than one person. I made it clear in my search that I was not offering a full time position and found there are many who only want part-time. There are CNAs, nurses, assisted living employees, retirees, etc. who wanted to supplement their other work. Also, I found many who combined the days/hours I offered with another client they had. I also made sure that each of my caregivers had met, worked together a few times with my wife and then evaluated the addition. The occasion that both were on duty for us was infrequent but it was claer that they were equal members of the team and had to work as such. I did end up terminating one person who had been with us a while because she had trouble working as part of the team and she fell short in meeting my wife's needs as she advanced in the disease. As a side note, I found so many who claimed experience with dementia patients who clearly did not know how to deal with this disease in a one to one basis. Their experience seems to have come in a facility setting not one to one. As I added people I needed a way to communicate and document each work day. I ended up establishing a private Facebook page limited just to me and the caregivers and we all posted daily. That was really helpful and useful with hospice and others to share information they needed. Hope this helps.
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Thanks Howhale. Very thorough and helpful advice.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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