My husband has EOAD, is 62 and is entering a new stage. I am 49 (for one more day) and entering the looney bin. Up until this point I felt pretty comfortable leaving him at home while I was at work. I'm going to need to get some help at home for when I go back to work. (I am a school speech therapist and am off for June and July) I am thinking that soon he will not be safe on his own. He doesn't drive or try to, he doesn't wander, hasn't hurt himself. He just has really poor short term memory and very limited sequencing skills (ie completing a simple task). Can still get dressed himself (needs reminders to choose different clothes). I'm thinking he needs some companionship and someone to get him out. And I'm thinking I need some respite so I can get out once a week or so (and perhaps delay my entrace to the aforementioned looney bin) Can some of you tell me what you did when you were at this stage? I've checked some local resources. Whatever I do, I will have to "spin" it for him, because he thinks he is fine.
Just want to let you know I read your post and am gathering ideas for you, but I have to run out, and will be out until late afternoon. By the time I return, others will probably have given you ideas better than mine.
First of all, Happy Birthday! I had to get DH into Adult Day Care so I could work full time. In our case, it was paid for by Senior Services. I just pay for his van transportation each way, which is about $2 each way. Check with your local Senior Services Agency or contact the Alzheimers Assoc. chapter in your area. They can probably point you in the right direction.
Have you sought counsel yet for legal, financial guidance? I don't think it's too early to start. If you haven't, you may experience a financial disaster. Everyone on this site encouraged me to seek legal counsel. I can't help you with the other, but I'm sure many here can. Jane of this group is the financial guru. After what happened to me, I just don't want anyone else to experience financial devestation by waiting until it is too late.
My husband also thinks he's fine. Just minutes ago the City workers came, because our sewer line backed up, even though we had paid someone to clean the line. My husband got confused that they were going to charge him to clean the main line. I had understood them perfectly. He came back into the house & said he was going to call the people who did the sewer line in the first place, he wasn't going to pay to have the main line flushed. I explained to him, that was not the case, it was on city property & there was no charge. We went together to talk to them once more, he told them "MY WIFE IS CONFUSED!" I couldn't believe it. Once again they explained to him that to flush the main line was free. What a frustrating thing, he can't "hear" what is being told to him.
Day care is wonderful! The one my LO went to had all ages and all types of disabilities. There was always something to do or watch. They had a great deck and beautiful fenced grounds. There were scholarships for those who needed them. It was a life saver for me until my LO needed full time care. My LO didn't think he needed to go there and maybe he didn't for himself, but it was necessary for my sanity.
Thanks for the bday wishes Kelly5000. Those of you that did daycare...how did you handle the transition. What did you tell your LO? Were they resistant at first? Then did they enjoy it?
I'm back from my errands, and I see you have had some answers. I have written this under some other topic, but I have no idea where it is, so sorry for the repetition for those who have already read it. My social workers say - NO ONE thinks they go to Day Care - they go there to either WORK or VOLUNTEER. That's the way you spin it. If your husband is resistant, get either your social worker, if you have one, or the Day Care people to talk to him about not "vegging out" all day, and how desperately they could use him to "volunteer" and help them out. I have been told by everyone who uses Day Care that once their spouse is there, they are fine.
However, it is very important to choose a place that is Dementia specific with staff trained to deal with Alzheimer patients. There are generic Day Care facilities for older people, but they are not appropriate for AD patients.
Does your husband have any retired friends who would be willing to spend one day a week with him - lunch, fishing, guy stuff? That would be one day less you would have to pay for Day Care.
I'm retired, so it doesn't apply to me - but isn't it the case that you can get some tax credit for care for your spouse while you work, the same as you pay for day care?
Hello Shoegirl: Are there any colleges in your area? My husband also has EOAD, he's 56, and for the first two years after his diagnosis, still drove and was always meeting friends for lunch and/or running errands for me. When he lost his driving privileges this past January, I found a graduate student in social work (a 50-year-old "second career" student, so a good "fit") who would drive my DH to his lunches, run errands with him, etc. At first my DH refused to go anywhere with him (mad about the car keys, and he still is!) but we told DH that it was part of our driver's school project (it sort of was). Eventually they bonded, but now our driver has a fulltime teaching assistant job and can only drive on Fridays, so I'll make do over the summer with my two daughters/17 and 21/helping out, and then I'll look for another student this fall. AND most of DH's friends who meet him for lunch are late 50s/early 60s, and have flexible enough jobs they can pick him up for lunch, so Joan's comments about retired friends is a great idea. In addition to social work students, I understand that occupational therapy students are usually a good fit as "companions," and in fact, one of the staff members at the local Alz. Association teaches OT at a local med. school and places some of her students with AD patients. As several others have mentioned, it is important for my DH to think he's helping out the caregiver/helper, not vice versa, since he's "fine" and "doesn't need help." In summary, I would check with local colleges and the Alz. Association in your area for leads on this type of help. I suspect the day care scenario will be our next step, and at least one person in our EOAD support group uses it for their spouse successfully, but for now, my DH enjoys being at home with his computer and his household "chores" (which he can still do pretty well), so just getting him out @ once a day for a few hours/errands works fine.
Hello again Shoegirl, and a very HAPPY birthday! (I forgot to add my best wishes in my first entry.) I turned 50 the year my DH was diagnosed, and I have learned that celebrating these big moments is yet another key to staying out of the looney bin, so ENJOY your special day. ALSO, I have decided to err on the side of more "help" than may be necessary at each stage of my DH's decline, again to keep myself out of the "worrrying" looney bin. Finally, I just got home from a lovely 80th birthday party for a girlfriend of mine (a lady blessed with many many friends of all ages, it was quite a gathering), and it reminded me once again that if I want to have a lovely 80th birthday party someday, I need to take good care of myself, despite the heartbreak of my DH's illness! HOPE YOU HAVE A GREAT DAY TOMORROW.
Happy Birthday! We are here for you, and hopefully you will get the extra help soon. I do hope the suggestions from the others will help you. I am at the stage that I know he needs someone to be at the house for him, but he doesn't think so, and will spend hours sitting in the flower beds in the shade pulling grass and weeds. The neighbors watch out their windows and keep an eye on him, and as long as this "stage" continues, I am hesitant to bring in someone against his wishes. If I could bring in a college student, I would.
I love the college student idea. My husband is at the stage where he wouldn't accept any help. But I'm filing this idea away for the Fall. Who knows. It just might work.
shoegirl - Happy Birthday! If your DH is like mine, he can't remember, so you have to get good wishes wherever you can! I sort of dread needing day care, since I think my DH would resist. Since he was a psychologist I might be able to use the 'helping someone' - but even now, he catches on to con jobs...
briegull, the way I read the infernal revenue tax code, you don't have to be working to deduction expenses related to care of a patient with dementia. It looks like day care in an approved facility would be included. Here is what I copied from the detailed explanation of allowable medical expenses:
Long-Term Care You can include in medical expenses amounts paid for qualified long-term care services and premiums paid for long-term care insurance contracts.
Qualified Long-Term Care Services Qualified long-term care services are necessary diagnostic, preventive, therapeutic, curing, treating, mitigating, rehabilitative services, and maintenance and personal care expenses (defined later) that are: 1. Required by a chronically ill individual, and 2. Provided pursuant to a plan of care prescribed by a licensed health care practitioner. . Chronically ill individual. An individual is chronically ill if, within the previous 12 months, a licensed health care practitioner has certified that the individual meets either of the following descriptions. 1. He or she is unable to perform at least two activities of daily living without substantial assistance from other individual for at least 90 days, due to a loss functional capacity. Activities of daily living are eating, toileting, transferring, bathing, dressing, and continence. 2. He or she requires substantial supervision to be protected from threats to health and safety due to severe cognitive impairment.
Maintenance and personal care services. Maintenance or personal care services is care which has as its primary purpose the providing of a chronically ill individual with needed assistance with his or her disabilities (including protection from threats to health and safety due to severe cognitive impairment).
Happy Birthday my friend...I love them and will celebrate them as long as I live..some how... Talk about LO not needing help...that is what George always says..but I know there will be a time I will need them..and he will have no say in the matter.. I see a little dementia progressing more and more...last night he said where is the bathroom and also he said when are we going to leave here...I hear he say are we staying here? He is very close to be will not have me out of his site...I asked him who I am and he will tell me..Donald my son is staying for a few days and I asked him who this man was and he did know..but he does get stubburn and set in his ways...how do you cope with that..JOY
And another added Happy birthday, Shoegirl! i always thought my Dh wouldnt go well in the AD day care as if someone should get aggressive or offensive he wouldnt hesitate to tell them off:) or worse:) so i didnt use that service but looking back probably should have. since we are both retired and home- we are a may/december couple and so its easier since i am 17yrs younger than him. i just was discussing with a lady who said she would love to be a livein for me, and would care for my DH inhome. i have desperately been searching for someone i thought would be of my scrutinizing ways to help me care for him. i wouldpay her a salary on top of givingher room/board. we are talking it over and hopefully we will work out the details of how/when we can get this arrangement done to both our satifisfaction. gosh, i cant wait but need to see my CPA about how to pay for it now. ha. i would pay her 2k /month i think or so. and its tax deductible. i would think early on use the daycare services and or any means you can be it govt agency or personal hire. divvi
Thank you all so much for the information and the birthday wishes! Now I have some ideas to look into and about 6 weeks to get it together before I go back to work. I like the idea of getting someone to come to the house, like a graduate student. That could be a good transition before the AD Day Care. Wouldn't it be great if someone could come up with a better name for it?? P.S. I had a great birthday...with two parties, yippee!