Support for those with loved ones with dementia?

[ginadc]

After our last visit to my parents in Nebraska for Thanksgiving, this has been really weighing on my mind--all the issues that go along with having a loved one, especially a parent, with dementia. Is there anyone else out there going through this? I thought we might be able to talk about our experiences and vent a little.

My mom has some form of dementia, moderate stage. It's been determined not to be Alzheimer's, but the doctors can't figure out exactly what it is. I don't know how much difference a precise diagnosis would make in their/our daily lives anyway, since the only forms of dementia that are currently "treatable" (like B deficiencies, etc.) have been ruled out. Looking back, her memory has probably been failing for at least the last 4 years (she was definitely not herself at our wedding, although it was mild enough we could write it off), but she's really gone downhill over the past 2 years. Christmas of 2005, she and my dad were here with us, although we could see she was failing. By last Christmas, there was no way on earth she could have managed a plane trip.

The dementia is also more recently accompanied by motor problems, such as tremors and weakness. Parkinson's may be involved, but she also has had strong "jerks"--what they call myoclonus--which isn't really Parkinsonian. They briefly diagnosed her with something really awful called CBGD, but we got her in to see the top neuromotor specialist in the midwest and he said it absolutely wasn't that. He put her on Keppra, an anti-epileptic, which stopped the worst of the jerks, so she can at least now feed herself. (When the spasms were at their worst, it looked as if she'd have to be in a nursing home within 3 months. That was over a year ago, so at least we bought her some more time at home.)

Anyway--so it's just enormously painful and stressful. I'm out here in NJ with DH, DD, and soon to be DS, and we can't really go back there all that often; I cannot be involved in her daily care. So my dad, who is a polio survivor and mostly needs a wheelchair to get around now, has home health aides coming in to help care for her in the mornings and evenings (get her out of bed, dressed, help to the bathroom, etc.). It's hard on him...he can't get out of the house that much, especially in the winter, so he's pretty much stuck at home with her 24-7, and it can get enormously frustrating trying to have a conversation with her. (Or just trying to get some quiet time so he can watch the ball game.) She's at a point now where she gets these "conversational obsessions"--one day it's the Holocaust and it's so important that we all remember it, the next day it's something else. And it's ALL she will talk about. The clothes in the closet aren't hers, they're ugly. She has certain words she hates and will get nasty if someone uses them--one of the home health aides once referred to one pair of her pajamas as "jammies" and now she refuses to wear them, saying "I hate those 'jammies.'" The personality changes are really terrible.

Being there for five days was hard enough--I can't imagine how my dad handles it all the time. And I feel enormously guilty, because I'm not there to help, and honestly, I hate being there the entire time I'm there. I know she can't help what's happening to her, but it gets so frustrating and upsetting and I sometimes lose my patience. I miss my mom, you know? And it makes me so angry that she won't get to have a real relationship with her grandchildren, the way my mother-in-law does and will. (She's 15 years younger and a lot healthier.) And I'm angry that I can't share this pregnancy with her the way I'd like to, and that she and my dad won't be able to be here when the baby is born. It just sucks.

:: sigh :: Just needed to vent about some of this, and see if anyone else out there was in the same or a similar boat.

[ysolde]

I have been thinking about this a lot in the past 24 hours. My father was diagnosed with AD yesterday. I am in shock. He has always been my rock, the one I counted on and believed in. This is a man who has always lived a life of the mind, he was always reading something, discussing French New Wave films with me, loves classical music (especially Bach, which he loves to break down "mathematically," to use his term).

For the past few months, he has not really been talking to me. I suspected something was up, but could not figure out what it was. I put it all together yesterday, realized that he is no longer able to carry on a conversation the way he used to all the time, is aware of it, and does not want to "embarrass himself" over the phone with me. I am feeling so numb right now. I feel as if I have lost my father.

[RobynScott]

Gina,

I'm so sorry! I just wanted to write and send you some support! It's not my mom but my husband's grandmother. I know the relationship is further, but he was very close to her - and I know it's hard on MIL (her daughter). She also has some form of dementia but not Alzheimer's. We are lucky that her personality has nit changed much - she just doesn't remember things.

What about getting a home health aide to live with them all of the time? Would your father go for that? Maybe someone that could take them both out - or if your father drives, go with them to watch after your mom? Or even to stay with your mom while he goes out?

DH's grandparents had an aide living w/ them for a while and when his GF passed away, the aide stayed with his GM until they could no longer afford it . At this point she is in a nursing home. She recognizes us - DH has to remind her who I am, but she generally gets it. Then 5 mins later, asks who I am again. Obviously it's harder on DH b/c he knew her before - I've only known her since her memory was failing - though it's gotten significantly worse in the 7 years I've known her. I don't know if this helps at all - but I wanted you to know that you're not alone.

ETA - ysolde (((hugs))) - I'm so sorry. Is there any way the disease can be managed or reversed with treatment? Wish I could do something more than offer cheesy internet (((hugs))).

[LittleFredPunkinHead]

I have not personally been there, but my grandfather (my mom's dad) had dementia and eventually ended up going into a nursing home. My grandmother took care of him for several years, but it eventually got to be too much for her. (He couldn't really go into assisted living, because he needed someone to watch out for him round the clock. For example, he was a mechanic and very handy all around, and one day he took apart the TV in his room.)

I don't know your views on it, but I'd suggest strongly keeping an open mind about the possibility of an assisted living/nursing facility. Taking care of someone with dementia is a really hard job (I know I'm not telling you anything you don't already know!), and there's absolutely nothing wrong with getting help from professionals to do it. (I guess I think about it this way- just because I love my husband a ton, doesn't mean I'm the best-equippied person to give him a physical, you know?)

Anyway, what I really meant to tell you about was hospice care. My parents both started volunteering with their local hospice after my dad's mother died. She lived with them for several years after she had numerous strokes and couldn't care for herself.

Hospice volunteers can help out by visiting with patients, giving respite to their primary caregivers, helping with errands, etc., etc. My parents both have people they visit with on a weekly basis, and they generally see the same people so they can build a comfortable relationship.

Here's a link to the hospice foundation's website: http://www.hospicefoundation.org/
My parents live in a town of 15,000 in a pretty remote area. I mention that because I figure if there's a hospice group there, there's probably a hospice group close to almost anywhere in the U.S.

[camberne]

My father was diagnosed a little over two years ago with Alzheimer's Disease. THEN, a couple months ago, he went to see a new neurologist (his other one was retiring) and the new one said that he disagreed with the AD dx and dx'ed him instead with Parkinson's Disease. My dad doesn't have tremors so much as he has lost motor skills (very unfortunate, as he used to be a fantastic painter and carver), his walking is very shuffled, his talking is garbled a lot (almost like he had a stroke, but he has not), and his memory is failing... it's really remarkable the things he does remember versus things he can't remember.

My mother is having a horrible time dealing with it all, even though since the change in dx the prognosis isn't nearly as dire as it was with Alzheimer's. She is still in denial and tries to get him to do things by himself - then when he does them and does something wrong, she yells at him. He feels terrible, and she feels guilty for getting so angry... It's a horrible situation all around.

The worst time for me thus far was when I went to pick up my son from choir practice, and my dad looked at me and said "oh, you don't have to take Geoffrey home, Alice is coming to pick him up." When I got to the car, I cried, because he hadn't recognized me. It didn't last, but it was a bucket of cold reality thrown in my face!

Gina, I don't have any sage advice... just wanted to let you know that we're going through it, too; although, not nearly at the stages where your family is now. My thoughts will be with you!!

Ysolde - I'm so sorry that you and your father are going through this now, too. The worst thing for me when my father was initially diagnosed, was he was/is very aware of what will be happening to him and the depression and fear that came was so heartbreaking. I think we all have gone through depression associated with his diagnoses.

{{hugs}} all around!!

[ambula704]

I am so sorry that you all are going through this. My grandfather has dementia (as does his sister...and I have heard it runs in the family, is that true?) and it is really hard for me. What makes it the toughest is that my grandmother is very healthy and active and wants to still do everything they used to do, and my "Poppy" just cant. He doesnt like to be in unfamiliar places (ie anywhere but home) and he gets really nervous when she leaves his sight (which she doesnt do often, but still). Anyway, its really tearing me up seeing them and I just wonder how much worse it will get. Physically he is doing really well, they have always ate well and exercised. But mentally he is definitely failing...

I have no advice but just wanted to join and say its a horrible, horrible thing and I hope no one else in my family is afflicted...I dont know what I would do if it happens to my own father as he ages...just thinking of it sends a lump to my throat...

[ginadc]

Oh, ysolde, I'm so sorry this is happening to you and your dad. It sucks...there's just absolutely no other way to put it. It's so not fair. If I had to "choose" a serious disease to happen to me or a loved one, I think I'd pick pretty much anything else but dementia. Like your dad, I cannot imagine losing the "life of the mind."

Are you and he both in New York? If so, I really recommend getting in touch with an amazing woman named Paulette Michaud at the Alzheimer's Association of NY. (Her e-mail is pmichaud@alznyc.org; tell her that Gina with Neurology Now gave you her name.) She runs all the programs and support groups that they have for people with early-stage Alzheimer's disease, and they have a ton of resources. She is an absolute rock of support. (I did a story for Neurology Now on early-onset AD and sat in with one of her groups, which is how I met her.) She can get you hooked up with resources for both you and your dad, and she's just an incredible person to talk to. Even if your dad's not in the area, you could probably take advantage of a lot of their resources.

And also, if he is in the area, one of the best treatment/support programs for people with AD is at the Taub Institute at Columbia, up in Washington Heights. That's where a lot of the best research is being done, so it may be possible to get him into a clinical trial or something like that.

On my mom's sitch--yeah, we've talked about nursing homes a lot. At first both my dad and I were adamantly opposed. She will go downhill mentally much more rapidly in a nursing home, there's just no two ways about it. Even the best nursing homes aren't great, and our town doesn't have "the best." And she cared for my grandmother, great-aunt, and a family friend while they were in nursing homes for the better part of 10 years...so she knows them and hates them.

But...the time is coming. I think what will probably ultimately drive the decision is when she gets to a point that home health aides can't manage--for example, she eats less than a supermodel these days and has lost an enormous amount of weight. You can't convince her to eat more; she just gets snarky and says you're "bossing" her. At some point she'll have to have IV nourishment, if she doesn't start eating more, and home health aides (at least the ones we have) can't do that.

Also, honestly, I think my dad is going to really need a break soon. He just can't take it 24-7 much longer. He also has congestive heart failure (diagnosed 8 years ago), and I can't help thinking that the strain of having her at home is not good for his physical health. We talked about it when I was home. He said that if he passes away first, he thinks it would be better for her to go into a nursing home out where we are (there's no way she could live with us--our house just isn't set up so that it would be possible, and I don't think our family could take it) rather than home in Nebraska. It's sad, but a lot of their friends (whom they've known since high school, some of them) just don't come around anymore. So if he died, her ties to my hometown wouldn't be that strong. Now, if she goes into a nursing home there before she dies, and starts to adjust, then we agreed that it would make more sense for her to stay there rather than be uprooted again.

The joys of the "sandwich generation."

ambula, dementia does seem to have some sort of a familial component, but it's not clear how much of one. I know that my grandmother and great-aunt both had Parkinson's (though their decline came in their late 70s rather than early 70s), so I worry that there is a predisposition to neurological disorders that I might have inherited from my mom's side. I don't think there are clear predictions about the likelihood of having dementia if a parent or grandparent has had it...because the genetics of the disease are so complex, and there are probably many other environmental factors too, it's hard to tease out.

[ysolde]

Gina --

Thanks so much for the info! I am emailing this woman right away!

I am so sorry about your mom. Over twenty years ago, my grandparents went through something similar:

My grandmother was diagnosed with AD. It was in an intermediate stage. My grandparents lived in Spain, my parents lived in PR, my aunt and uncle lived in CT. My grandfather thought that he could handle my grandmother on his own, and he did, for a short while. When my father and uncle went to visit, they realized their father could not handle the situation. Home health care aides were hired. This worked for some time, but, as my grandmother deteriorated, she needed more help than could be provided at home. Meanwhile, my grandfather was having terrible headaches. He was diagnosed with an inoperable, malignant brain tumor.

So, my father and uncle moved my grandparent to a nursing home in the suburbs of Madrid. Because Spain has a parallel public/private medical system, this nursing home, which was private, was a palace. Doctors on site 24/7. Incredibly kind and loving nurses. My grandfather died a few months after arriving, on December 24, 1986. My grandmother died exactly 10 years later, on December 24, 1996. In the ten years she was there alone, she was in good health (AD can be strange that way).

[Lindsan]

My grandmother had dementia for a very long time. Thinking back now I'd say she had it in some shape or form even before I was born. The last ten years of her life was really bad. My grandfather was the most proud person I have known in my life and refused to ask for help. He covered up a lot of her illness so even though we knew she was ill we never really got how hard it was for him to take care of her. He fought until one day when he was hit by a car on his way home from shopping (he was 90 and still took the bike to go shopping). His leg was seriously hurt and I think he realised he would not be able to take care of her like before. Being the incredibly proud and stubborn person he was, he was unable to accept the obvious. After 60 years of marriage, and after taking care of her for so long, he could not reconcile with placing her in a nursing home. He hung himself in their shed three weeks after his accident.

His death resulted in her illness spinning out of control. It was very hard for me to see her. It was just too emotional. One minute she would be asking for granddad and wondering why he couldn't come and get her, only to remember what had happened the next minute, and then the next minute being wrapped up in something that had happened when she was a little child. She lived for two years after moving into the nursing home. She never knew who I was the few times I could manage to see her.

I don't have any good adice to give you. I just wanted so say I'm sorry. Dementia is very difficult to accept and to deal with. I know my story is not a positive one. But I know what you are going through.

[Taylandra]

*Hugs* to all of you dealing with this disease process...If you have not already, I encourage you to read The 36 Hour Day. Many of the families I talk to at the nursing home have told me that it helps them understand some parts of AD and dementia and not feel so isolated.

I'm sad to hear that there isn't a "good" nursing home near your parents, Gina. There are some great assisted living facilities that focus on memory impairments out there. Perhaps there is one not too far away that is not advertised much. I know there are some not great places out there. We have had residents come from two places curled up in the fetal position, not talking or making eye contact, and be up in a chair occ. making appropriate conversation within a month or so. Residents have good days and bad days no matter where they are though...No matter how hard we try.

You might want to contact the state's Council on Aging (unless you've done so already) b/c they may be able to get your dad hooked up with state funded community assistance for home health aides and the like, if you have not already. I know that in TN, you can even get a doctor to write a prescription for diapers and then get them for free through a particular company!

As far as eating is concerned (or the lack thereof), that is part of the disease process. As some of our residents get further in the disease process, their brain no longer picks up or sends hunger signals. It is amazing how long a person can survive with little nourishment.

I hope I didn't sound pushy or real bias-y, but I guess I wanted to offer some support and some hope that not all facilities cause the disease process to quicken. I'm so glad to hear that you have a great contact with the AD Association-I love the training they offer here and the support groups they offer.