Need you help on how to care for ailing 82 yr old who does want t

leibrookNovember 6, 2006

My sister, 75, is the caregiver for her ailing husband 82. In the past year they have had many challenges. In Aug 2005, he drove from New Orleans to Texas to get away from the ravages of Hurricane Katrina, having lost everything with their house uder 10 feet of water. They stayed with us for a couple of months and then moved into an apt. In the past year, he has fallen backwards down the cement stairs outside of their apt, knocked unconscious, experienced double vision, broke his wrist, and thankfully, recovered. He even had his cataracts removed in May; When we thought all was getting better, in June, he fell in their apt, cut his face and broke his hip. Amazingly, his hip healed beautifully. The cancer next to his eye (which was removed before the week before the hurricane), returned with a vengence and he is now receiving 6 weeks of radiation. The problem is that he doesn't eat and has no energy and is very tired. (His teeth were lost in rehab after he broke his hip). I think the radiation to his face is affecting his taste, causing swelling and making it difficult to manuever his food, not to mention pain. The cancer is so close to his eye that the radiation has caused it to swell shut and he may lose his vision in that eye. He is down to 122 lbs from 160. He shows no interest, no activiity, even though a PT comes in during the week. He would sleep 24/7 if not encouraged to move around. Other than going for radiation, or staying awake for the PH, he no longer does anything for himself, just sleeps in bed or sleeps sitting up on the sofa. The latest is that his gerontologist told my sister that his MRI shows vascular dimentia. He has always had a good memory and still seems to have a good grasp when awake, but is never very alert. His son (who has Hep C and cirrhosis) is being torn apart by his father's condition. Could the dimentia be causing his lack of interest, lack of appetite, lack of activity, tiredness, as well as depression from all that has happened to him. He is just going from the bed to the sofa. My sister thinks that if he eats, he will regain his strength and make a come back, but her son and I believe she is in denial. Can someone shed some light on this for us? Are these some of the symptoms of vascular dimentia? Should he be encouraged to eat and be active if he refuses or is too tired or do we let nature take its course? Please forgive my rambling. There is so much stress over what is the best way to care for him. I would like to be of more help to my sister. She doesn't drive, so she can't go out on her own and cannot leave her husband alone and has no other help. I am afraid that the stress is going to finally takes its toll. Are there any govt. funded home health services that could offer her some relief? They are solely dependent on their social security. I am trying to open doors for them to get some help. Please share your thoughts and ideas with me. Thank you.

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1.The hospital where your BIL is receiving cancer treatment should have a 'social' worker who should give your sister a list of resources available to her
2. Consider getting'hospice' care - Dr. will need to fill out forms to get it - Medicare pays for it.
3. If your sis belongs to a church, she needs to locate one in her area where she might get some 'help', i.e., someone to 'sit' w/BIL and get her out` for a while, someone who could take her places, etc.
Where in Texas are they?


    Bookmark   November 6, 2006 at 10:44PM
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Thanks for your response. They are in Carrollton, TX. My BIL finishes up his radiation treatment this week at an Oncology Center in Lewisville, TX. He also has a gerontologist. They have sent out a PT twice a week and a nurse once a week for about 30 min. She has one more visit. My BIL is not considered terminal, so I don't think he qualifies for hospice. Since moving here, they came to my church but never joined. I have also suggested that she talked to the Pastor who is a very loving and compassionate person who might be able to help her. To date, she has not taken me up on the offer. She and her son differ on the style of treatment and it's creating such stress. I think she is a bit too stubborn as is he, but I tell them they need to get together for the sake of my BIL. The good news is that he gained about 1-2 lbs. Thanks for your concern.

    Bookmark   November 6, 2006 at 11:56PM
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i just wanted to welcome you. although i don't live in the U.S., and things are very,very different here in canada, my heart goes out to your sister. i am only 50 and take care of Al 24/7 and we only have our dd at home with us. i was referred to a mental health specialist (better known as a shrink) and was told that i am fine, and that i am a very wonderful person and very caring (they don't me that well -lol) and that if she was ill that she wished that i could care for her. seems that i am exhausted, so i can imagine how your sister feels along with all the other things. i was reading an article that a friend will say if you need anything just call, she is probably like me and will never call for help, i think that perhaps if someone said to me debbie i'm going to the grocery store at 1 today write your list out and i'll pick it up for you, i'd probably take them up on it. also when someone becomes ill, people are there and then they just disappear over time, we have not seen al's sister in law for almost a year (which for us, is good!).
the 1-2 pounds is Great news! i had alot of weight problems with Al, but the doctor can suggest different foods he can eat or drink (al hated boost, but like carnation instant breakfast, which is pretty much the same thing).
my doctor on monday, suggested that i take a course on something i enjoy, easier said than done, i enjoy just being at home with my sewing machine or knitting needles, but again that's just me.
again, good luck and welcome!

    Bookmark   November 8, 2006 at 11:35AM
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Do a google search for "Vascular Dementia (note the corrected spelling) There are many sites that explain what's going on and what's going to happen in the future.

Basically it means that the brain is not getting enough oxygen from it's blood supply due to some reason. The brain is gradually functioning less and less. His behavior will depend a lot on what part of his brain is at risk.

Your sister may be in denial. Don't take away her hope. As the eye gets better, he may feel much more normal.
Take Care

    Bookmark   November 8, 2006 at 7:17PM
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I would like to suggest you at least call one of the hospice care agencies. In Texas you do not need to be 'terminal'. My Mom has had hospice for 2 yrs (she has very advanced MS) - you must have an 'incurable' condition. Hospice has even asked my Dad if he wanted their services! He has high blood pressure, had 2 mini strokes in July, has Type II diabetes.

It was hard for him to 'accept' Mom needed more care than she was getting, and he too thought that meant Mom was 'terminal'.....well at 88, no one is too far away from being 'terminal'. We were told Hospice was for 'end of life care'. Mom is at the end of her life (and so is Dad although at times I think he still believes he has a lot of years left - he is 93).

Good luck...Carolyn

    Bookmark   November 13, 2006 at 9:30PM
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Yes, I would give hospice a call, they do more than just terminal people. The best advise is the social worker, but sometime you have to call the numbers a few times to get someone to help or can give you a number on where you need to go.

I do know with radiation, you will get tired, hopefully that is it and that may affect appetite also.

Whenever friends offer to help, take them up on it. I never did and you get burnt out fast. When there is an illness you find out who your friends really are. You will be surprised that someone you think you can count on, you can't, but someone you hardly know comes to your aide.

    Bookmark   November 15, 2006 at 7:33PM
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It's been a couple of weeks since your posting, so I hope you've been able to follow-up on some of the good advice you've already received from this list. I will add to the other comments that your SIL should ask about a speech pathologist. I think Medicare/Medicaid should provide this. They can help with his eating/chewing difficulties. Also, there are medications (Megace, Peri-actin --not sure about the spelling of those) that act as appetite stimulants. Loss of appetite is something that often happens to the elderly. Probably the other issues -- cancer, radiation, loss of dentures are complicating the situation. He might be depressed too, which causes a loss of appetite, or it could be the dementia. In any event, if they can give him some medication to stimulate the appetite, and have him work with a speech pathologist to assist with chewing difficulties, likely he will feel better.

All of the symptoms you listed CAN stem from vascular dementia. The body is a finely tuned machine, and when you have a "break down" in one area (such as the inability to chew or eat), it can often act like a domino effect in leading to other problems.

My experience in taking care of my 84-year old father has taught me not to wait for the doctors or caregivers to make suggestions for my father. Instead, if I see a problem, I research it and bring it to the doctor's attention REPEATEDLY until he/she addresses it. My father had SEVERE anemia and the doctors were really dragging their feet. Finally one day my Dad said to me "I don't think they realize how bad I feel." I called the doctor and they finally took my Dad seriously and admitted him to the hospital, and he needed a transfusion of FOUR units of blood. Then, he wasn't eating (likely a result of the anemia), and the doctors were fully aware he wasn't eating, but they didn't seem to offer any advice. Then I learned about appetite stimulants and asked the doctor about it and they said "okay" let's try that. Now he is eating very well and he is feeling much better. So, tell your SIL to ASK, REQUEST, BEG, do whatever to get your BIL comfortable and healthy. Mary

    Bookmark   November 24, 2006 at 1:04PM
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